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Preview: Family caregiving FAQs and Articles - eXtension

eXtension Articles,Faqs- family caregiving

Updated: 2017-03-23T21:40:04Z


Online Resources for You!


Are you struggling to find online resources pertaining to caregiving and the military? If so, use the following links as a start to help you. Some of the links will connect you to a resource designed for an older adult yet it has information that would be valuable to a military caregiver.   Caregiver Health Depression Family Caregiving Information Military One Source-Wounded Warrior National Military Family Association National Resource Directory-Family and Caregiver Support Respite Care Veterans Affairs Caregiver Support: Caring for those who care Caregiver Tasks and Responsibilities AARPAssistive TechnologyCaregiver Action Network (CAN)Family Caregiver AllianceNational Parkinson FoundationVirginia Navigator Employment Adecco Career One Stop Employer Support of the Guard and Reserve (ESGR) Military OneSource-Spouse Education and Career Opportunities Military Spouse Corporate Career Network  Military Spouse ementor ProgramMilitary Spouse Employment Partnership ProgramNational Military Family Association National Resource Directory-EmploymentU.S. Chamber of Commerce Foundation: Hiring Our Heroes Financial Issues Army Traumatic Servicemembers’ Group Life Insurance (TSGLI) Defense Finance and Accounting Service eBenefits Military Compensation Military One Source- Money Management National Resource Directory-Benefits and Compensation National Veterans Legal Services Program TRICARE Warrior Care Policy–Compensation & Benefits Handbook Medical Conditions American Red CrossAmputee CoalitionBlind (AFB)Blinded Veterans Association (BVA)Burn Survivor Resource CenterNational Cancer InstituteCancer TreatmentDefense Health Management System (DHMS)DepressionExtremities lossHearing LossHearing Loss Association of AmericaMilitary Health System (MHS)Military Mental HealthNational Rehabilitation Information CenterNational Center for Telehealth and TechnologyNational Institute of Mental Health-PTSDNational Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)National Spinal Cord Injury AssociationParalysis Resource CenterParalyzed Veterans of AmericaMental Health SystemNational Center for PTSDSubstance AbuseTraumatic Brain Injury (TBI)Vision Center of Excellence (VCE)War Related Illness and Injury Study CenterWebMD Military Community Army Emergency Relief (AER) Army OneSource Fisher House Foundation Military Installations Military OneSource Real Warriors U.S. Army Wounded Warrior Program (AW2) Military Family Support Family of a Vet Many Faces of Stress for Military Family Caregivers Military Families Learning Network Military KIDS Connect Respite Care Stigma in the Military Wounded Warrior Project-Family Support Relationships Caregiving Action Network–Changing RelationshipseXtension–Caregiving is Different for EveryoneFamily Caregiver Alliance: Caregiving & Sibling RelationshipsMilitary One Source-Relationship Health and Family WellnessU.S. Army–PTSD & Role Reversal Resource Directories Caregiver Resource Directory Everyone Serves : A Handbook for family and friends of Service membersOffice of Warrior Care Policy Wounded Warrior Project Veterans Continuing EducationDisabled American VeteransVeterans Affairs Working with Military Families How to Help SeriesProfessional Development Training for Service ProvidersWorking Effectively with Military Families: 10 Key Concepts all Providers Should Know [...]

Assistive Technology Resources


Military Specific Limb loss – An article in the Journal of Rehabilitation Research & Development provides examples of the resources available to service members including what each organization provides along with contact information. Computer/Electronic Accommodations Program (CAP) – Provides assistive technology and accommodations to individuals with disabilities and wounded service members so they can be employed in the federal government. Brainline Military – Provides military-specific information and assistive technology resources on traumatic brain injury (TBI) for service members. National Resource Directory – Provides a searchable database of government, national, and state assistive technologies and devices. In the box labeled “search for resources,” type in assistive technology or the name of a specific technology, device, or disability, and a list of possible resources will be generated. Military In-Step – Detailed information for service members who have a military amputation on the unique characteristics of war injuries requiring an amputation, what to expect during surgery and rehabilitation, care after surgery, and the prosthesis. National/State Specific AbleData – A searchable database of over 40,000 assistive technology products including objective descriptions plus educational fact sheets on assistive technologies and products by state. Alliance for Technology Access ( – A national and international network of technology resource centers, community-based organizations, agencies, individuals, and companies with a mission of increasing the use of technology by children and adults with disabilities and functional limitations so they can participate fully in their communities. Assistive Technology Industry Association (ATIA) – A professional organization of agencies that provide assistive technologies. It provides links to resources and partners that can provide specific information on different types of technology or devices. Brain Injury Association of America – A national organization that promotes awareness, education, treatment, research, and advocacy for individuals and their families who have some type of brain injury. – A government website that links to federal, state, and local government agencies; academic institutions; and nonprofit organizations with disability programs and services in communities nationwide. National AgrAbility Project – Provides direct support to farmers and ranchers with disabilities or long-term health conditions that make it difficult to work in production agriculture. The project also has a searchable database of assistive technology solution for producers with disabilities. Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) – A professional organization dedicated to promoting the health and well-being of people with disabilities through increasing access to technology solutions. The organization provides a listing of state contacts at Technology for Long-Term Care – A helpful site to explore and compare various adaptive products. It was designed for older adults but has helpful information regardless of the individual’s age. Educational LiveAbility House – A demonstration home in the Second Life® environment that shows individuals with disabilities how different design principles and assistive technology devices can enable them to live independently in their own homes. eXtension – A website with many educational resources designed for family caregivers; provides a link to a military-specific caregiver page. Assistive Technology and You – An article that provides a brief discussion of what assistive technologies are, where to find them, and how to pay for them. Assistive Technology fact sheet by the Family Caregiver Alliance – Written for older adults but provides ideas on low cost assistive devices that can be helpful for everyday tasks. [...]

Respite Resources


Respite resources can be found geographically or by the different branches of the military. When exploring your options, keep in mind respite programs will have different qualifications, hours of operation, and services provided. The following resources have been identified as a starting point.   Educational Resources about Respite Adult day care fact sheet. This fact sheet has helpful hints on different types of adult day cares, regulations, and tips on how to select one that meets the needs of your wounded warrior. Older adult day care fact sheet.This fact sheet emphasizes how to locate an adult day care in your community. Access to Respite Care and Help (ARCH). The National Respite Network and Resource Center contains a searchable database to find local respite programs and statewide respite coalitions ( National Adult Day Services Association. This professional organization for adult day cares has a consumer section that provides helpful checklists detailing what to look for in an adult day care.   Easter Seals. This fact sheet focuses on resources provided to military families and veterans. Military Resources Military OneSource has counselors available 24 hours a day to listen and help you with coping strategies. This organization also provides educational resources including fact sheets and various online courses. It has local resources available in your community. A fact sheet on Respite Care for Families with Special Needs is available. U.S. Army Exceptional Family Member Program provides the standardized process for delivering respite care to eligible families. Coast Guard Mutual Assistance Respite Care Program provides a fact sheet that explains respite care and how to apply for assistance. Navy Exceptional Family Member Program provides a link to respite resources. TRICARE Insurance has an interactive page to identify specific respite benefits for your wounded service member. Veterans VA Medical Centers – Some centers provide respite for eligible family members of veterans. Consult for more details on how to apply, eligibility, and contact individuals. Adult Day Health Care – A fact sheet on adult day cares. Respite Care – A fact sheet from the VA on respite care. National Resource Directory – Numerous resources on respite that can be found by doing a search using the term "respite care." [...]

What is Long-Term Care?


The phrase "long-term care" describes a variety of services that provide medical and non-medical care to people who have a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom.

Long-term care can be provided at home, in the community, in assisted living, or in nursing homes. It is important to remember that people may need long-term care at any age. It is also possible that they may never need long-term care.


We would like your feedback on this Personal Finance Frequently Asked Question.

What are Health Savings Accounts?


Health Savings Accounts (HSAs) were designed by Congress to provide tax advantages to individuals enrolled in high deductible health care plans. Deposits to an HSA are used to pay qualified medical expenses.

The 2017 maximums for annual contributions to HSAs are $3,400 for individuals and $6,750 for a family. Money in the account grows tax deferred, so an HSA serves as a type of savings account to pay future health care expenses.

For more information, see

We would like your feedback on this Personal Finance Frequently Asked Question.

Do You Have Special Needs? Plan for Evacuation



Disaster preparedness includes having a plan for evacuations as they can be stressful and hectic. This is especially true if special needs are involved. If you have special needs or are caring for a family member at home, plan ahead for resources and services you and your loved one might need if you need to leave your home quickly.

You have two sources of help:

  • Your support network of family, friends and neighbors
  • Emergency professionals in the community

Here are some tips from the experts:

  • Create a support network to help you in an emergency.
  • Provide your family, friends and neighbors with a detailed description, in writing, of your needs.
  • Tell your support network where you keep your emergency supplies.
  • Give at least one member of your support network a key to your house or apartment.
  • Show others how to operate medical equipment (such as oxygen) that may be needed by the person for whom you are caring.

Contact your city or county government's emergency preparedness office. Let them know about your situation and ask to be included on a registry of people with disabilities who need to be reached quickly in case of an emergency. Be sure the care receiver wears a medical alert tag or bracelet to identify his or her disability. Have copies of any appropriate legal care documents handy.

If someone in your home uses a battery-operated wheelchair or uses a life-support system or other power-dependent equipment, call your power company. Many utility companies keep a list and map of the locations of power-dependent customers in case of an emergency. Utility workers will try to make your home a priority to get you reconnected as soon as possible. 

For more information and additional resources, visit the Federal Emergency Management Agency website. Of particular note, this website has a section specifically aimed at helping you tailor a disaster plan for your needs.

Specific Medical Conditions


(image) Many military families are caring for returning service members who have experienced injuries while in combat. The road to recovery is often difficult and uncertain for a wounded warrior and his/her family. If you are caring for someone who has sustained injuries while in combat, you may find useful one or more of the following links to educational materials pertaining to military caregiving.


Depending on your wounded warrior's specific medical condition, use the relevant link or links to find tips and strategies on caring for your loved one and information about various resources that are available to you.

Caring for Those with Traumatic Brain Injury

Caring for Those with Spinal Cord Injury

Caring for Those with Posttraumatic Stress Disorder

Caring for Those with Severe Burns

Caring for Those with Vision Loss

Caregivers of Military Amputees

Caregivers' Guide to Battling Suicide on the Home Front

Caring for Those with Chronic Pain

Be an Expert Problem Solver! Caregiving for and Coping with Traumatic Brain Injury

Caring for Those with Vision Loss


 Are you caring for a wounded warrior who has experienced vision loss due to military combat? Are you struggling to understand his or her condition? Medical staff from military treatment facilities work to help wounded warriors regain as much sight as possible. However, after your wounded warrior is released, you will assist him or her with daily activities and aid in the recovery process. It's important that you, as a caregiver, become aware of the issues your wounded warrior may face. Understanding vision loss According to the Department of Health and Human Services, vision impairment or blindness can be caused by damage to any portion of the eye or optic nerve or damage to certain parts of the brain, affecting its ability to receive or process visual information correctly. Even when wearing protective eyewear, service members may suffer eye injuries from explosions and resulting debris. In many cases, these eye injuries require multiple surgical procedures and treatments. Many people who experience eye injuries regain partial or total vision; however, many wounded warriors with severe or complex injuries have permanently impaired vision or are blind. Vision impairment is defined as the inability to see objects as clearly as usual or to see as wide an area as usual without moving the eyes or turning the head. A person with low vision has a significant reduction of visual function that cannot be fully corrected to a normal level by ordinary glasses, contact lenses, or medical treatment. Individuals with severely low vision, or limited vision, can be considered legally blind. Through treatment procedures and therapy, wounded warriors can learn to use specialized equipment to maximize their vision and/or learn to read and write Braille to regain independence.  Acknowledging the emotional effects of vision loss Wounded warriors who have vision loss or an inability to process visual information correctly may experience many difficult emotions, including grief, fear, shock, anger, and depression. It is important to acknowledge these emotions Listen and offer help when your wounded warrior is experiencing worry, anger, frustration, or fear.  Be patient. Let your wounded warrior do as much as possible, even if tasks take longer or he or she does something differently from how you might do it. Provide assistance to your wounded warrior if asked. He or she can tell you what is needed or how you might handle the challenge together. Ensure that the environment is as predictable and consistent as possible, and orient your wounded warrior to new surroundings. Provide directions if necessary. Be specific; for example, say “The tape recorder is on your left.” Greet your wounded warrior by name, and let him or her know when you enter or leave a room.  Making your home accessible for your wounded warrior You can make relatively simple changes that will help your wounded warrior stay safe and comfortable in your home. Also, you can learn techniques for helping your wounded warrior move easily while traveling outside your home. Improve lighting to reduce glare that results in light and dark contrasts throughout your home. Organize your home for a more safe and comfortable environment. Eliminate objects such as low tables and throw rugs to prevent falling. Guide the wounded warrior to a chair by placing his or her hand on the back, arm, or seat so that he or she can sense its placement and be seated. Introduce techniques and devices such as a cane for assistance. Use the sighted guide technique to assist your wounded warrior while walking: walk a half step in front, and have him or her hold your arm just above the elbow. This allows you to announce any hazards, such as steps or holes in the path. As needed, inform bus drivers, shopkeepers, or others about your wounded warrior’s vision impairmen[...]

Caring for Those with Posttraumatic Stress Disorder


  Does your wounded warrior… Have difficulty sleeping or suffer from nightmares? Have unwanted memories or thoughts? Suffer from anxiety and panic attacks? Become irritable or angry or express violent behavior? Use alcohol or drugs to cope with stress? Feel scared or confused? Have trouble managing daily activities? If so, he or she may be experiencing symptoms of posttraumatic stress disorder (PTSD). Many survivors of a traumatic event return to normal with time, whereas others take longer to heal—these individuals may develop PTSD. Causes and symptoms of PTSD PTSD is an anxiety disorder or condition that is common in wounded warriors who have been exposed to traumatic events while performing their military responsibilities. According to Journal of Rehabilitation Research & Development, service members serving in Afghanistan and Iraq are involved in a variety of situations that can have an impact on the mental state and emotional well-being of an individual. They endure long periods of extreme stress, experience intense battlefield activity that poses personal harm and involves the taking of life, experience their own injuries, and witness the injuries and deaths of others. PTSD is a silent, invisible injury that may be characterized by three main clusters of symptoms. According to the journal Aggression and Violent Behavior, the three clusters are re-experiencing symptoms, avoidance symptoms, and hyperarousal symptoms. Re-experiencing symptoms may be characterized by nightmares, flashbacks, and intrusive memories. Avoidance symptoms center on avoidance of thoughts associated with traumatic experiences. Hyperarousal symptoms include sleep disturbance, anger/irritability, difficulty concentrating, and an exaggerated startle response. Strategies for helping and coping Living with a wounded warrior who suffers from PTSD can place a heavy burden on the caregiver. PTSD patients may experience difficulties in social, professional, and family life, along with their own internal struggles. It's important to learn how to help your wounded warrior and yourself respond to your situation. Document your wounded warrior’s symptoms in a diary by paying special attention to how mood, feelings, and stress impact his or her daily activities. Reduce the stress you and your wounded warrior experience by trying behavioral therapy and relaxation techniques, such as meditation. Identify your wounded warrior’s triggers. Triggers are things that brings about a symptom of PTSD, such as sounds, smells, words, or even certain people. To avoid setting off triggers, develop a good communication system with your wounded warrior. Encourage contact with family and friends. A support system may help your wounded warrior get through difficult changes and stressful times. Check with doctors about antidepressant medications that may help your wounded warrior feel less sad. Recognize that your wounded warrior might not want your help all the time. Take walks, go for bike rides, or do other physical activities together. Exercise is important for keeping brain activity in balance. Establish routines. Join a support group for caregivers who are experiencing similar wounded warrior situations. Locate such groups by contacting your local Army installation's Soldier and Family Assistance Center (SFAC).  Learn as much about PTSD as possible. Knowing how PTSD affects people may help you understand what your wounded warrior is experiencing.  Emotional impact of caregiving Helping an individual who has PTSD can be hard on the caregiver. As a caregiver, you may have your own feelings of fear and anger about what is happening to your wounded warrior, or you may wonder whether life will ever return to the way it was. These emotions can begin to affect your ability to serve.  Do not feel guilty o[...]

Caring for Those with Spinal Cord Injury


Is your wounded warrior suffering from a spinal cord injury (SCI) that requires you to assist him or her with daily activities such as bathing, dressing, and bladder management? If so, you are not alone. Caregiving can be emotionally, intellectually, and physically challenging at times. However, you can do several things to take care of yourself and ultimately better serve your wounded warrior. Causes and effects of SCI The spinal cord is a long series of nerve cells stretching from the brain to the lower back. These nerve cells send signals from the brain to all parts of the body and back to the brain. During military operations, service members may be exposed to ammunition explosives, fragments, or blasts that can penetrate the spinal cord. Depending on a wounded warrior’s injury, its severity, and the impact on nerve cells, the SCI may affect neighboring parts of the body. Disruption to the spinal cord can lead to changes in movement, feeling, and bladder control and possibly to changes in brain activity. Damage to the lower portion of the spine can result in paraplegia (the loss of motor or sensory function) and possible loss of bladder, bowel, and sexual function. Injury to the upper portion of the spine near the neck area can result in tetraplegia, also called quadriplegia, which causes the loss of function in the lower body, upper body, and arms. The good news is that according to Journal of Rehabilitation Research and Development, recent advances in medicine are allowing individuals who have sustained a severe SCI, who a decade or two ago would not have survived, not only to survive the injury but also to live long, productive lives. Strategies for helping and coping It's important that you, as the caregiver, learn strategies for helping your wounded warrior and yourself. Introduce techniques and devices, such as a wheelchair, for ease of mobility. Learn about various rehabilitation programs available for individuals with SCI. Contact your wounded warrior’s occupational therapist to help both you and the patient understand accessibility features, such as ramp inclines and door widths. Connect with your wounded warrior’s military social worker to help you and your wounded service member better understand Social Security Disability (SSD), Veterans Affairs and Medicare/Medicaid benefits, separation from the military, advocacy groups for the disabled, and legal resources and protections. Acknowledge the difficulty your wounded warrior may have in accepting new limitations. Learn how you can assist with your wounded warrior's common medical needs, including bowel and bladder care and pressure and sore prevention. Join a support group for caregivers who are experiencing similar wounded warrior situations. Locate such groups by contacting your local Army installation's Soldier and Family Assistance Center (SFAC). Learn all you can about your wounded warrior’s specific SCI; no one individual’s recovery process is the same as another's. The transition from wounded warrior to veteran According to the Department of Veterans Affairs, many veterans with SCI qualify for disability compensation because their health problems occurred during military service. Veterans Affairs also states that wounded warriors with SCI unrelated to military services may receive VA medical care under certain rules governing individuals with serious disabilities or low incomes. Upon qualification, benefits may include: Monthly disability compensation Compensation if the injury resulted in the loss of the use of hands or feet or in other disabilities Vocational counseling Grants for adapted housing and automobiles Clothing allowance Payment for home and attendant care Caregiver resources Remember: Veterans Affairs is there for[...]

Fifteen Questions for Hurricane Preparation


Satellite image of a hurricane Hurricane season for the Atlantic and Caribbean is June 1 to November 30, with peak season mid-August to late October. Regardless of the calendar, now is a great time to determine what you can do to be better prepared if a storm heads your way.  Even if you've been through a hurricane before, it is easy to forget some of the steps you can take to protect your family and property. Taking the right precautions before a storm has the potential to save lives, time and money. Are you ready? Review these questions to see if you are ready for a hurricane. It's time to take action if you answer "No" or "I don't know" to any of these questions.   Do you have a disaster plan? If not, visit or  (Spanish version) to download an editable family disaster plan template. Have you planned multiple evacuation routes and destinations? Do you have an emergency communication plan for staying in touch or getting messages to family and friends? Is your homeowner's and flood insurance up-to-date and sufficient to replace your home and belongings if they are damaged or destroyed? Do you have an inventory of your property and belongings? The Insurance Information Institute has online inventory software and secure online storage. Visit Know Your Do you have copies of your insurance policies, household inventory and other important papers, as well as other valuables, in a safe place -- one that's waterproof and fireproof? Which papers to keep in your safe. Do you know how to turn off your utilities (electricity, gas and water)? Do you have a plan and supplies on hand to protect and secure your home and outdoor items (and your boat and pool, if you have them)? Do you have disaster supplies such as batteries, a battery-operated radio, flashlights, lanterns, fuel, nonperishable food for three days, water/water jugs, manual can opener, medicines, traveler's checks or cash, and other necessary items on hand? Do you have an emergency supply kit for your car? If the weather has turned cold, you will need additional items. Do you have a plan of how to take care of family members with special needs (those with disabilities, infants or the elderly) in the event of a disaster? Have you decided what you will do with your animals if you must evacuate? Have you budgeted for the added expenses to protect your home, buy supplies, evacuate, clean up and recover? Have you discussed your emergency plans, duties and rules with your family? Do you know eXtension offers free information on cleanup and recovery? Be sure to also check your state's Cooperative Extension Service website for disaster cleanup and recovery.   [...]

Employed Family Caregiver Survey


Caregiving—including care of elderly persons who are frail and dependent—has always been a primary function of the family. Today this function has assumed new significance because more women have entered the workplace. Childcare and eldercare issues have become important workplace issues as employees strive to balance work and family caregiving responsibilities. As portrayed in the "burning-the-candle-at-both-ends" image above, the process of balancing work and family can be stressful. As many as 10 percent to 31 percent of working caregivers leave their jobs as a result of caregiving responsibilities—some elect to retire early; others quit working altogether. Most working caregivers, however, make workplace accommodations and try their best to create a balance between work and caregiving responsibilities. Nearly 75 percent of adults currently shouldering elder care responsibilities have been in the workforce (either on a part-time or a full-time basis) at some point in their caregiving experience.   Of those currently employed, about 1 in 6 workers are providing care to one or more elderly or disabled adult family members, relatives or friends. Importantly, these caregivers do not abandon their caregiving responsibilities because of work. Instead, they cope as best they can to balance conflicting sets of responsibilities.  This balance is difficult to maintain, and often impacts both caregiver and the employer.  The magnitude of missed work from the employer’s standpoint translates into an estimated loss of 120 million workdays each year, and the equivalent of $25.2 billion in lost productivity.   You are encouraged to view videos created by University of Wisconsin Cooperative Extension addressing “employed caregiving” which tackle issues related to care given to elderly family members by persons who are also employed.  The primary objective of these videos is to help employers create work environments that are supportive of families and households simultaneously engaged in work and elder care.  Specifically, the video Employees and Caregiving: An Overview (Length: 5:42) addresses family caregiving and its effect on American business and the importance of employers providing support to their employees with caregiver responsibility. To address the growing needs of employees who are adult caregivers, six University of Wisconsin Cooperative Extension family living educators and the program specialist in aging developed and piloted the “Employed Caregiver Survey.” This confidential, web-based survey process produces an executive summary and a longer report, both of which define the scope and needs of employed caregivers and make recommendations for assistance. Data gleaned from the The “Employed Caregiver Survey” will provide a solid foundation for the establishment of future caregiver educational programs and outreach. This document has complete instructions on Implementing the Survey. To access the survey, a person representing an employer (e.g., a person in a Human Resource Department or an Extension county educator) first completes and submits the registration form: Employed Family Caregiver Survey - Registration Form Once the registration form is processed, a survey designed for that particular employer/workplace is made accessible online. When given the website address for the survey, employees anonymously complete the survey, which takes about 10 minutes. Information provided by the survey cannot be linked to any particular individual, and responses to items about gender, age, and race are optional. Once employees have anonymously completed the survey, all of the information is collected and sent to the contact person for the employer. The report, which bears the name of the employer [...]

Employed Family Caregiver Survey - Report Tools


Implementing the Employed Caregiver Survey

You may download and print the step by step guide for (image) Implementing the Survey Instructions.

To see what the employer will receive after the survey is completed review these documents:
Survey Cover sheet:
Survey Cover
Sample Survey Results: (image) SAMPLE Survey Results.pdf

Employed Caregiver Videos

These short videos address the issue of “employed caregiving" - topics related to care given to elderly family members by persons who are also employed.  The primary objective of these videos is to help employers create work environments that are supportive of families and households simultaneously engaged in work and elder care. Go to Videos and Resources on Issues Related to Work and Eldercare to view the videos and access additional information.

Voluntary Versus Mandatory Evacuations


The Federal Emergency Management Agency defines evacuations as the organized, phased and supervised movement of people from dangerous or potentially dangerous areas. Some evacuations occur without the direction of government officials. This happens when residents either perceive of or are aware of an actual emergency and evacuate an area on their own. Voluntary and Mandatory/Directed Evacuations involve government direction.

The definitions for these follow:

  • Voluntary Evacuation. A warning to persons within a designated area that a threat to life and property exists or is likely to exist in the immediate future. Individuals issued this type of warning or order are NOT required to evacuate, but it would be to their advantage to do so.
  • Mandatory or Directed Evacuation. A warning to persons within the designated area that an imminent threat to life and property exists and individuals MUST evacuate in accordance with the instructions of local officials.

One factor to consider when deciding whether or not to evacuate is the type of disaster or emergency. Some emergencies allow you time to prepare (such as hurricanes or winter storms), others can come upon you quickly (such as flooding, wildfires or tornadoes).

If you live in a flood-prone area, it's best to evacuate during the voluntary phase so you will have enough time to move. Flood waters can come upon you suddenly and trap you, making it difficult or impossible to leave at a later time.

If you feel you will need assistance in moving the individual you care for, it's best to plan early and move early. If you wait too late to evacuate, you may not be able to find friends or neighbors to help you.

If you choose not to evacuate during the voluntary phase, it is imperative that you monitor the emergency situation closely.

Whatever you decide, it is extremely important to have an evacuation plan. FEMA provides some guidelines to help you prepare.

Source: SLG 101: Guide for All-Hazard Emergency Operations Planning, FEMA, 1996.

Disaster Recovery: Stress and Decision-making


Caregivers coping with the aftermath of a natural disaster are faced with making important decisions about their loved one's needs. This might include rebuilding or repairing a home or even starting over in a new place. Even though the immediate danger has passed, we still worry. Because our lives have been turned upside down, we may continue to feel anxious. If you are dealing with the responsibilities of rebuilding and trying to ‘sort things out’ with an insurance company you may be feeling especially stressed. While you may have family and friends to whom you can turn, there are times when you feel like you must make decisions on your own. Many of us play the “what if” game with ourselves. What if I make the wrong decision? What if someone is taking advantage of me? What if I don’t have enough money? What if... And so we worry. We feel stressed and anxious. We are anxious because we feel like we must make decisions quickly. It seems like things are happening that are out of our control. And often we must make decisions about things we don’t know much about, such as choosing roofing materials or understanding insurance clauses. You may be tempted to simply wring your hands and wonder what you can do. Though you can’t do anything what has happened, you can do something to control your worrying. Below are some simple strategies to reduce stress and anxiety. Of course, these strategies won’t make all the fear go away, but they may help you regain control over your life--no matter what your age or situation. Do One Thing At a Time Do you sometimes have problems finishing things you’ve started? Is it difficult to concentrate? Do you find yourself constantly drawn into the television to get the latest news? You aren’t alone if you find yourself glued to the TV. In fact, doing this has become so common that it has a name: the CNN Effect. If continuous news of storms and rebuilding efforts cause you to worry, watch the news once and then turn it off. Watch something light and entertaining. Are you so wrapped up in what’s happening and the decisions that you must make that you lose track of your usual work and daily tasks? Suddenly you are faced with a mountain of unfinished tasks, and the next thing you know, you are stressed about the things you haven’t done. Specialists suggest that doing one thing at a time, and completing that project before beginning another as a good way to help gain control over stress. Choose one task that needs to be done right away, and then complete it. Then take on the next one. Checking these things off a list is a great stress reducer. Stick to a Routine One of the most effective ways to reduce stress is to keep your normal routine. It is sometimes hard to do that when you have other things on your mind. Having a routine is a way to maintain control in your life. Routines are especially important for caregivers. Stress and anxiety can become more manageable when you work to control the things you can. Try these tips. Maintain your regular sleep schedule and that of the person you are caring for If you are staying up later than normal to watch the latest news, you may not be getting enough sleep. And, for many people, “watching the war” right before going to bed is like eating spicy food late at night – you just don’t sleep very well! Eat regularly and well During times of stress some people say that they just can’t eat…while others use eating in an effort to reduce their feelings of stress. Focus on the healthy foods you enjoy, but reconsider any plans to make drastic changes in your eating habits when you are under stress. In time, you will again feel normal and [...]

Medical Supply Checklist



Disability-Related Supplies and Special Equipment

Check the items you use, describe them and note where they're located.


____Eating utensils:

____Grooming utensils:

____Dressing devices:

____Writing devices:

____Hearing device:


  • Flow rate:

____Suction equipment:

____Dialysis equipment:

____Sanitary supplies:

____Urinary supplies:

____Ostomy supplies:


  • Wheelchair repair kit:
  • Motorized:
  • Manual:







Service Animal and Pet Supplies


____Extra water:



____Identification tags:


____Vaccinations and medical records:

Have a Plan

Although planning for a disaster can be frightening, having a plan in place can help you and the person you care for feel more secure.

For more information, download the American Red Cross's Be Red Cross Ready factsheet:

Photo by Teutotechnik / CC BY

Making Home Repairs After a Disaster


In addition to repairing the damage done to your home, now is a good time to think about any features you might need to add to make it more accessible and to better support both you and the person for whom you are caring. These features may include a ramp, wider doorways and grab bars. Hiring a Contractor If you’re hiring someone to do home repairs, take care to find a reliable company or individual. Ask people you know to refer you to a contractor, or call the local office of codes enforcement, builders' association, Chamber of Commerce, or Better Business Bureau. Check to see if your state requires general contractors to be licensed. When looking for a contractor, it's important to identify one with the expertise you need. Some contractors build new homes, while others specialize in reconstruction or remodeling work. Find a contractor familiar with the type of work you need, and ask to see some past projects. If this is not possible, ask for references from previous jobs. The contractor must be insured and provide you with proof of insurance. Insurance should include comprehensive policies that protect his or her business and your home, including public liability, property damage protection, and workers’ compensation. The contractor also should warranty damage that might become evident in the year after the job is completed. Collecting Written Estimates Ask for written estimates for the work, including all details, from at least three different bidders. Make certain all are bidding on exactly the same job. Remember, the lowest price is not always the best. There may be a misunderstanding about the nature of the work being quoted, a mistake in the quote, or differences in the quality of workmanship and materials. Written Contract Details All the details and agreements about the job must be written down. Include the building plans and/or specifications in the contract. Specify the start and finish dates in the contract to protect your interests, but realize that bad weather, availability of materials, or other problems may affect these dates. If possible, have a lawyer review all contracts and related documents before you sign (especially for large projects). The contract should specify terms for payment. There may be terms for making a series of payments throughout the project, such as after each inspection is made and passed. Don’t make a large first payment, and don’t pay for the project in full until all work and an approved final inspection has been completed. Describe the work to be done. This should include a detailed description of the materials and grades to be used as well as the repairs to be made. Include all financing information required by state and federal laws. List the name and address of all contractors and your name and address. Clearly state any warranties or guarantees on the work. Be sure both you and the contractors sign the agreement, with each of you keeping original copies. Never sign a completion certificate until all work is satisfactorily done. Also, never pay a contractor or worker in full for work before it is finished. The contract should specify the payment schedule. Photo by Infrogmation / CC BY [...]

Caregivers Should be Prepared for Wildfire



If you live in an area prone to wildfires and are a caregiver, you must have a preplanned escape route. In the event that your first route is blocked, you should have a secondary or back-up escape plan. As is the case for all potential disasters, you should have a disaster evacuation kit packed and ready to go at all times.

You must pre-plan how you will be able to get the person you care for out of the house quickly. You may need to enlist the help of a friend or neighbor in developing this plan, as often another person is needed to help move a non-ambulatory individual. Your local fire department or rescue squad can also provide assistance.

Someone from the local fire department or social service agency needs to be aware that you have a non-abmulatory resident in your home. This will help ensure that someone will come to assist if you are not home when the wildfire threatens.

For more information about wildfires, visit the eXtension Wildfire Information Network site. Additionally, prepare yourself for a wildfire or any other disaster by visiting the Federal Emergency Management Agency website - of particular note, this website has a section specifically aimed at helping you tailor a disaster plan for your needs.

Photo by Nsandre / CC BY

Get a Disaster Supplies Kit


You may need to survive on your own after a disaster. Households should be self-sufficient for at least three days (72 to 96 hours). This means having your own food, water and other supplies in sufficient quantity to last at least three days. The more severe the disaster, the longer you may be on your own. Local officials and relief workers will be on the scene after a disaster, but they cannot reach everyone immediately. It can take anywhere from a few hours to a few days for rescue workers to meet your family’s needs. That’s why it’s vital to have a supplies kit on hand to be able to sustain yourself until assistance is available. In addition, basic services such as electricity, gas, water, sewage treatment and telephones may be cut off for days or even a week or longer. Planning ahead will give you peace of mind. Put together a disaster supply kit with basics for you and others you care for if you need to evacuate your home or shelter in place. The Basic Supply Kit Remember that your family or caregiving situation may require something different or additional supplies. This list is a starting point. Every situation is unique. In some cases, you may need two sets of supplies. Keep the items that you would most likely need during an evacuation in an easy-to-carry container. When preparing for a possible emergency situation, think first about the basics of survival: fresh water, food, clean air and warmth. According to, a basic emergency supply kit could include the following recommended items: Water, one gallon of water per person per day for at least three days, for drinking and sanitation Food, at least a three-day supply of non-perishable food Battery-powered or hand crank radio and a NOAA Weather Radio with tone alert and extra batteries for both Flashlight and extra batteries First aid kit Whistle to signal for help Dust mask to help filter contaminated air and plastic sheeting and duct tape to shelter-in-place Moist towelettes, garbage bags and plastic ties for personal sanitation Wrench or pliers to turn off utilities Manual can opener for food Local maps Cell phone with chargers, inverter or solar charger Other Items Once you have gathered the supplies for a basic emergency kit, you may want to consider adding the following items: Prescription medications, hearing aid batteries and extra eye glasses. If you are responsible for providing care for someone who is disabled, review the medical supply checklist. Infant formula and diapers Pet food and extra water for your pet Cash or traveler's checks and change Important family documents such as copies of insurance policies, identification and bank account records in a waterproof, portable container. You can use the Emergency Financial First Aid Kit developed by Operation Hope, FEMA and Citizen Corps to help you organize your information. Emergency reference material such as a first aid book Sleeping bag or warm blanket for each person. Consider additional bedding if you live in a cold-weather climate. Complete change of clothing including a long sleeved shirt, long pants and sturdy shoes. Consider additional clothing if you live in a cold-weather climate. Household chlorine bleach and medicine dropper – When diluted, nine parts water to one part bleach, bleach can be used as a disinfectant. Or in an emergency, you can use it to treat water by using 16 drops of regular household liquid bleach per gallon of water. Do not use scented, color safe or bleaches with added cleaners. Fire extinguisher Matches in a waterproo[...]

Natural Disasters ... What about the Animals? Video Recordings


Video recordings from the Sept. 24, 2011, Human-Animal Bond conference at Kansas State University are now available HERE.

The conference focused on pets and natural disasters and included the following sessions:

  • Book Review of ”Zeitoun” (written by Dave Eggers) by Dr. Greg Eiselein
  • First Hand Account of Handling Animals Following Katrina by Dr. Joseph Taboada
  • Invisible Pet Owners - Lessons Learned from Katrina by Lisa Greenhill
  • Lessons Learned Following the Greensburg Tornado by Dr. Christen L. Skaer
  • Personal Experience at Greensburg by Pam Muntz
  • How to be Prepared by Dr. Christen L. Skaer

For more information on pets and disasters, see the following resources:

Pet Items

Preparing for the Unexpected

Preparing your Pets for Disasters

7 Principles of Universal Design


Universal Design, also known as "design for all people" or "design for the lifespan," is a principle for designing environments for all people, regardless of age, gender, ability or change in ability. This philosophy of design, and its incorporation into overall design of a home or the addition of home modifications, can help make it easier to care and extend your ability to care for someone in your home. In addition, the features may help support the abilities of the person you are caring for, allowing them to maintain their functioning, and thereby their independence, longer. One example of a universal design would be the addition of a handheld adjustable-height shower. This feature can help both caregiver and care receiver. For the caregiver, it may assist you in bathing the individual you care for. For a care receiver who may need to sit while bathing, it may be the tool that allows him/her to continue to bath him/herself without assistance. Another example is the stairless entry to the home. This feature allows someone who cannot climb stairs to enter and exit a home with greater ease. Likewise, it helps a caregiver who may need to assist a wheelchair user in entering and exiting a home. In addition to providing support and extending the independence of the caregiver and care receiver, universal design supports the needs of all individuals living in the home—from young to old, from disabled to able-bodied—so everyone living in the home benefits from the incorporation of universal design. Principles of Universal Design While the principles were originally developed by a group of universal design advocates in 1997, they are applicable to the practice of universal design today. How The Principles are Formatted Name of the principle (a concise statement of the key concept embodied in the principle) Definition of the principle (brief description of the principle's primary directive for design) Guidelines (list of the key elements that should be present in a design which adheres to the principle) Images (photographic samples of the principles applied) Universal Design Definition The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. Please note: These Principles of Universal Design address only universally usable design, while the practice of design involves more than consideration for usability. Designers must also incorporate other considerations such as economic, engineering, cultural, gender, and environmental concerns in their design processes. Offer designers guidance to better integrate features that meet the needs of as many users as possible. All guidelines may not be relevant to all designs. Source: The Center for Universal Design (1997). The Principles of Universal Design, Version 2.0. Raleigh, NC: North Carolina State University. Compiled by advocates of universal design, listed in alphabetical order: Bettye Rose Connell, Mike Jones, Ron Mace, Jim Mueller, Abir Mullick, Elaine Ostroff, Jon Sanford, Ed Steinfeld, Molly Story, & Gregg Vanderheiden. Used with permission, Copyright © 1997 NC State University, The Center for Universal Design. The Principles of Universal Design were conceived and developed by The Center for Universal Design at North Carolina State University. Use or application of the Principles in any form by an individual or organization is separate and distinct from the Principles and does not constitute or imply acceptance or en[...]

Grandparents Raising Grandchildren - Doubly Stressed Triply Blessed


Highlights concerns and presents solutions for grandparents & other relatives raising children.



Grandparents Raising Grandchildren: Doubly Stressed, Triply Blessed is a multimedia program – with video and written curricular materials – designed to introduce members of the public and social service professionals to the pressing issues and concerns faced by grandparents and other relatives raising children and to present concrete ideas for addressing these problems at both the individual and community level. Click Here to learn more about this curriculum.

There are five parts to the Doubly Stressed, Triply Blessed program:

  1. Check your Knowledge: This section consists of true or false questions designed to assess one’s level of awareness of some of the issues faced by grandparents and other relatives caring for children (also referred to as “kinship care families”).
  2. Video Clips: There are four video segments to the program -- Becoming a Grandparents Raising Grandchildren (GRG) Family, Issues GRG Families Face, Resources for GRG Families, and Taking Action.
  3. Kinship Care Family Support Groups: This section highlights some of the benefits of support groups for grandparents and other relatives raising children as well as some things to keep in mind when developing new support groups.
  4. Evaluation Form: Please use this brief survey to tell us your thoughts about this program.
  5. Resources for Kinship Care Families: This section provides information on resources provided by programs and organizations that support kinship care families.

Next Section: Grandparents Raising Grandchildren - Doubly Stressed Triply Blessed -- Check Your Knowledge

Loss and Grief - Activities to Help You Grieve


Losing someone special, regardless of the relationship, can be difficult. Here are several practical suggestions that may assist in your journey of healing and growth:   Take care of yourself physically. Grief can take its toll on a person’s physical well-being. It’s important to do your best to get adequate rest, to eat regularly, to take a walk or enjoy other forms of exercise that appeal to you. Forgive. Even in the best of relationships, there are usually memories that need healing. As you think about your relationship with your loved one and bring to mind areas of hurt or regret, give yourself permission to forgive. This may involve forgiving the person for the times he or she failed you, and it may involve forgiving yourself. This isn’t easy, but it’s an important step in moving forward. If the hurts you carry are deep and difficult to forgive, consider seeking professional help. Explore your spirituality. Times of solitude, inspirational reading, prayer, meditation, and community worship can provide comfort and enlightenment as you cope with your loss. Losing a special person can deepen and strengthen your spiritual life. Nourish yourself spiritually in whatever way works best for you-—prayer, song, worship, meditation, or study of scripture. Ask questions, and then allow yourself to be open to the inner guidance you receive. Listen to the whispers of your heart and soul. "Talk" with the person you lost. During moments of solitude, perhaps late at night or early in the morning, talk to the person you lost as if s/he were right there with you. Say whatever is on your mind, everything you wished you had said while s/he was still alive. After speaking, take a few moments to allow yourself the time to feel a sense of peace. Write letters. Similar to the exercise above, write several letters to the person you lost. In the first letter or two, openly express whatever feelings you might be experiencing. Don’t censor yourself. If you feel angry, lonely, depressed, fearful, happy, or relieved, say so. The key is to allow yourself to say what’s on your mind and in your heart. Once you’ve done so, write a final letter of gratitude to them. Let him/her know what you appreciate and what you’ve been grateful for throughout the years. Treasure fond memories. There are several ways in which you may want to treasure fond memories of your special person. You may choose to collect mementos and put them in a scrapbook, or put together a video collage of photos collected over the years, or host a potluck dinner for family and friends and record stories they share about the person. Do whatever helps you create lasting memories that you can go back to in the days ahead. Take time with your special person’s personal belongings. You need not sort through your special person’s personal belongings right away. According to grief specialist Dr. Alan Wolfelt: “You, and only you, should decide what is done with their clothes and personal belongings. Don’t force yourself to go through these things until you’re ready to. Take your time. When you have the energy to go through them, you will.” Honor your special person. Think of something you would like to do that would be significant or meaningful to your special person. Maybe s/he volunteered at the local meal program, so you decide to volunteer or contribute to the same program. If the person sewed quilts for the local children’s hospital, you might con[...]

Connections Between Grandmothers And Their Granddaughters


When it comes to the relationship you have with your adult granddaughter, how do your hopes and expectations match your current experiences as a grandmother? For grandmothers and adult granddaughters, there seems to be a correct “prescription” or “good fit” for building a strong relationship. This intergenerational relationship – done right – can be both powerful and meaningful for many years. If you are a grandmother you might ask yourself: Do you think your relationship with your granddaughter is similar to other grandmother-granddaughter relationships? Do you want more from the relationship with your granddaughter? How are you cared for by your adult granddaughter? If you are an adult granddaughter you might ask yourself: Do you think your relationship with your grandmother is similar to other granddaughter-grandmother relationships? Do you want more from the relationship with your grandmother? How are you caring for your grandmother? Popular media culture may create stereotypes about the lives of older women and younger women in our culture. But it is a dangerous notion to underestimate the diversity of the human and relational experience. We may be underestimating the diversity and importance of family relationships if we view them as being all equal and close as well. Even intergenerational relationships between grandparents and their grandchildren are quite diverse. They vary in quality and closeness depending on the sex of the grandparent and grandchild, with the grandmother-granddaughter connection being the closest. Today, grandparenthood generally begins sometime during middle age for the grandparent and therefore grandchildren are young adults, in many cases, when the grandparents reach older adulthood. Grandparents and their grandchildren could find themselves in these roles for as many as 50 or more years. These relationships may become more complex and important during the later years for the grandparent and adult years for the grandchild. The Support Relationships Provide for Us In our relationships with others, we often get and give different kinds of support. We care for each other and receive care differently depending on our sense of connection to the person with whom we are interacting. We may look to a certain sibling for a particular kind of advice or spend time with an adult child to help them to grow in a certain area of their life. There are specific kinds of support that family relationships provide for us: sharing of affection - loving and feeling loved feelings of intimacy – sharing vulnerable thoughts and feelings a source of companionship – spending time together opportunity for nurturance – a sense of feeling needed by another person reassurance of worth – affirming your own competence a sense of reliable alliance – a lasting, dependable bond the obtaining of guidance – access to needed help satisfaction – a general feeling of overall satisfaction in the relationship Not all of these forms of support are found in equal amounts in all relationships, but certainly family relationships, and more specifically grandparent - grandchild relationships, provide important quantities of many or all of these at some time during the course of their existence. The Special Connection While the family and developmental tasks of caregiver and romantic partner are prevalent in wom[...]

Home Safety in the Kitchen: Burn and Fall Prevention


Have you ever had an accident in the kitchen? Two common kitchen accidents are falls and burns. There are a number of things we can do to prevent these accidental injuries in the kitchen. The following are ideas to help burn and fall prevention in the kitchen. Burn Prevention Make certain the range is located so that curtains cannot fall onto the burner. Don’t hang towels on oven handles close to a burner. Oven controls should be located on the front or side of the oven, so that you don’t have to reach over burners. When you cook: Turn pan handles away from other burners and the edge of the range. Do not wear garments with long, loose sleeves. Roll back your sleeves or use a rubber band to keep sleeves from dropping down onto hot surface or flame. Do not store cooking utensils above the range, as you will have to reach over the flame to retrieve them. Keep hot pads and pan holders near the range. Use a safety hook to slide the baking rack out in order to retrieve hot foods without burning yourself. Use a microwave for food preparation, whenever possible. Only operate the microwave when there is food in it. Unplug small appliances when not in use. Keep a fire extinguisher near the stove. Make certain that you know how to use it and that it is properly charged. Cover any exposed hot water pipes under the sink. Smoke alarms should be present in your home and in working order. To help remember to keep fresh batteries, mark replacement dates on your calendar yearly. Many people change batteries during daylight savings time. Fall Prevention Light switches should be located near the entrance of the kitchen. Turn the light on before you enter — never enter a dark room. The floor surface should not be slippery and should be non-glare. Keep frequently used items within reach, so that you don’t have to use a step stool. If you must stand on something in order to reach an item, do not use a chair. Use a sturdy, stable step stool with handrails, so that you can hold on while standing on the top step. **Make certain that the step stool is fully opened and stable before you climb on top. Make certain all screws and braces are tight. Do not step near the edge on the steps, step in the center of the step. Never use a stool with broken or missing parts. Keep drawers and cabinet doors closed when not in use. Eliminate all throw rugs. If you do use rugs, they should have a non-skid backing and should not be placed in traffic areas. Wipe up all grease or liquid spills immediately. For additional resources and information, watch this short video on Fall Prevention in the Home. Also, the Centers for Disease Control and Prevention maintains a clearinghouse for fall prevention resources.     Click on one of the following links to explore various accessibility and safety concerns and solutions related to the kitchen. Introduction Vision Changes Burn and Fall Prevention Adaptations Storage Considerations   [...]

Loss and Grief - Signs of Death


Physical Signs of Death People who are close to death might signal that the end is near in a variety of ways. The dying process evolves over time with some physical signs that death is near including: Breathing changes. The dying person’s breath may become irregular, speeding up and then slowing down. The breath may pause before starting again, or become very faint and quiet. Difficulty swallowing. If the dying person begins to have difficulty swallowing, fluids should not be forced, but the mouth may be moistened with a damp sponge. Disorientation. The dying person might not recognize family and friends, or might confuse them with one another. He might be confused about time and place or make restless, repetitive motions, such as pulling at bed linens or clothing. Don’t try to prevent him from doing these things, but you may calm him with a loving touch, a gentle voice, a passage from a favorite book, or a soothing song. Loss of bowel and bladder control. Urine becomes more concentrated and what little there is might appear tea colored. Gurgling or rattling sounds. Sometimes mucus appears in the mouth, throat and lungs. Air flowing past the mucus might make a gurgling or rattling sound. The noise can sometimes be reduced by turning the person on her side. Cold extremities. The dying person’s hands and feet, and eventually, legs and arms, often become cool to the touch. Circulation in the extremities is decreasing as blood is reserved for the most vital organs. Sleepiness. As the body’s metabolism slows, dying people spend more and more time sleeping, appearing unresponsive and difficult to wake. Be gentle and speak in a normal tone of voice. Keep in mind that a dying person often continues to hear even after the other senses have stopped working. People who are close to death might ramble or say things that seem confused or jumbled. Listen closely to what is said as the messages they are trying to convey just before dying are often of great importance. Maggie Callanan and Patricia Kelley, nurses who have written an excellent book on this topic, say that dying people might express themselves through unusual behavior, symbolic language, or words that seem out of context. Sometimes dying people talk about specific destinations, the need to prepare for travel, or reconciling with a loved one. Advice for Caregivers Callanan and Kelley offer this advice: Pay close attention to what the dying person says and does. Discuss with other family members and friends the loved one’s comments and gestures. Accept what a dying person says or does. If he says, “I see a beautiful place!” you might respond by saying: “That’s wonderful. Tell me what it’s like.” Ask open-ended questions in an encouraging manner. If the person alludes to visiting his dead mother, you might say: “I’m glad you feel close to her. Can you tell me more?” Remember that a dying person might recall images or use language that reflects experiences from his life. For example, a former pilot might talk about getting ready for take off. You might ask: “When will the plane leave?” Or: “Is there anything I can do to help you get ready?” Don’t ask too many questions or express frustration or failure if your attempts at conversation don’t work. Helpful responses may include: “It's okay. We can try talking again later.” Or: “Let [...]

Age-based Stereotyping


Research surrounding intergenerational communication and age-based stereotyping often begins by asking children a series of direct questions about what they think about older adults. For example: What do you think older adults do for fun? How do you think it feels to be an older adult? What do you think you will do when you become an older adult? Children may portray life after age 60 as having limited activity and being uninteresting. Comments may include statements like “they just take care of their pets” and “they like being old because they get a free bus pass.” The following quote is from an 11-year old child just before participating in an intergenerational program designed to address community issues: “I think it would be sad to be an elderly person because then I would have to live in an old folks’ home and I would be with other old people and my body would feel like hell. I would have arthritis and lots of pain. I think I would spend my time just watching TV in my wheelchair or rocking chair and reading the newspaper or a book.”1 As children in this program got to know the older adults on a personal level, they began to question and see past the stereotypical views of inactivity and illness, and realize that it is a mistake to equate physical limitations with mental disability. The following comments, made by students after the six-month program of weekly sessions, illustrate the development of more positive views toward older adults: “Grandma S. showed a picture of herself. She was the only one to remember to bring pictures in our group. And I thought senior citizens forgot.” “By the way seniors acted, you’d think differently about them because most people think all seniors walk so very slow and they don’t like to do anything but sleep. But that’s not the way these seniors act. They are so full of energy and they are fun to be with.” Influences on Intergenerational Communication Age differences may influence intergenerational communication due to age-based stereotyping. Stereotypes may be formed regarding age due to the fact that age is a highly visible characteristic and is therefore easy to use as a way to make assumptions about other people. Also, since many young people and older adults have limited contact with people of other age groups, stereotypes tend to thrive.2 With little intergenerational contact, a young person may be influenced by negative images of older adults, where old age is often associated with disability and isolation. Additionally, older adults with limited contact with youth may accept negative stereotypes of youth; for example, that they are loud and disrespectful. It has been shown that the stereotypes people hold of older adults influence how they talk and the topics they bring up for conversation. This may include questions that are asked and the responses that are encouraged.3 Age-based stereotypes also influence whether a person’s talents, contributions and feelings are acknowledged. Fortunately, there are ways to counteract these negative stereotypes. To help people understand and appreciate differences among people -- whether based on race, ethnicity, gender or age -– it is necessary to go beyond simply providing information about another person. We must share experiences and promote regular contact with each other to change attitudes. [...]

Loss and Grief - Grief Comes With Many Emotions


There aren’t any “shoulds” with respect with how grief is felt or expressed. It's common for people who have lost a spouse or someone close to feel sad, angry, helpless, guilty, anxious, lonely and frightened. It is also common to experience a sense of shock or numbness, especially if the death was sudden and unexpected. All of these feelings are normal, though not pleasant; they are all part of the process of grief. The key is to accept your feelings, whatever they may be, and not deny them or push them away. This may be very difficult, since it can be quite painful to allow yourself to experience grief. Generally speaking, common emotions of grief are: Shock. At first, it may be difficult to accept that your loved one has died. Some survivors cry, but others are too numb. They’re in shock. Shock acts as a defense against the painful feelings associated with loss. Shock is nature’s way of helping us through what otherwise seems unbearable. Disorganization. As shock lessens, feelings of uncertainty, confusion or disorganization often set in. All of the activities associated with everyday life may seem unimportant given the major loss you’ve experienced. A person’s normal routine is now forever changed. Given this, it is sometimes helpful for the grieving person to plan each day. It may be important not to over plan, however, so that you will still have time for to be alone and reflect, and time to talk to loved ones about your feelings. Volatile emotions. Anger, bitterness, hostility and resentment are common emotions experienced by a grieving person. These feelings may come on suddenly and without explanation, or may emerge gradually. These types of feelings, while uncomfortable, are no cause for shame. It’s best just to accept your emotions and express them in healthy ways. Guilt. Feelings of guilt and anger may occur at the same time. Some people may feel guilty because of their angry feelings. Others feel guilty about something that was said or done that is now regretted. Still others may experience guilt if they believe they could have done something to prevent the deceased person’s illness or death. Such nagging thoughts often begin with “if only” or “what if.” If only we had called the doctor sooner. What if we had recognized the symptoms earlier? It is important to try to counteract these thoughts by acknowledging positive actions such as "I went out of my way to make dad comfortable," or "We had some good laughs talking about our memories." When working through your feeling of guilt be open to confiding these thoughts and feelings with a trusted friend or relative. If individuals find themselves feeling guilty and angry for long periods and can’t seem to move on, it’s important to consult with a professional. Loss and loneliness. This is often the most painful of emotions and involves acknowledging the significance of the loss. Many people will feel depressed and will withdraw from activities they previously enjoyed. They may feel a sense of emptiness and lack of purpose. They may notice constant reminders of their loss--an empty chair, a photograph, a piece of mail addressed to the deceased, etc. It is important to keep in contact with friends and relatives you can lean on and confide in. Some people find it useful to seek the help of a profess[...]

Issues in Intergenerational Communication


Intergenerational communication is an important aspect of many, if not all, relationships, especially for grandparents raising their grandchildren. According to research, the communication that takes place between two or more people may help to define their relationship1. In grandparents raising grandchildren (GRG) families, there is often uncertainty and tension accompanying changing family circumstances. Communication is important as a means for making family members aware of each other’s changing needs and helping them support one another. Communication is also key for helping family members learn how they can better function as a cohesive family. One factor that differentiates grandparent-grandchild relationships from parent-child relationships is the greater difference in age. The "number" that makes up a person's age is not necessarily the issue; it's the experiences of the person throughout their lifetime. Without knowing about a grandparent’s experiences during past times of personal or national financial crisis, for example, a grandchild may not understand the family finance choices the grandparent makes today. Intergenerational understanding goes both ways – older adults need to learn about the experiences to which grandchildren are exposed on a daily basis such as drugs, violence and sexual relations. Without understanding each other’s life experiences, it becomes all to easy to attribute differences of opinion to age-related stereotypes. As noted in a related article, age-related stereotypes can have a very negative impact on intergenerational communications and relationships. Promoting Positive Intergenerational Relations Intergenerational program developers and researchers offer various insights about how to promote positive intergenerational communication within families. However, it's important to understand that communication is complex and may need to "start slow and move forward gradually." In other words, start with something safe - an "ice breaker" - and build a dialogue, continuing toward finding similarities and achieving rapport2. As grandchildren and grandparents get to know each other better, deeper levels of involvement in each other’s lives will seem more natural. Whether talking about intergenerational communication between non-family members or family members, some of the same principles for strengthening relationships apply. When people do not know each other very well, it is good to think in terms of "warm ups" or "ice breakers," when they first come together, and, over time, move toward more in-depth activities to get to know each other better and explore common interests. The type of communication and the kinds of activities that work best for strengthening relationships will change over time. Another basic point about building intergenerational relationships is that they do not just happen -- they require time and careful planning. Activities such as watching a movie together do not tend to provide needed discussion and “getting to know you” time. However, with some planning, such activities can be modified to facilitate discussion. For example, an idea for transforming movie time into an interactive family experience is to create “movie kits,” i.e., collections of items that relate to a scene or theme from [...]

Adult Sibling Relationships


Sibling relationships are the only close family relationships with the potential to last a lifetime. Our contact with our siblings increases as we age. As people move from middle age to older adulthood, they often feel emotionally closer to their siblings and have less conflict. Even those over 80 years old have an average of one living sibling. And a majority of older adults consider one of their siblings to be a close friend. We share biological and cultural heritage with our siblings, as well as memories based on shared history. When siblings leave home to establish their own lives, it is not unusual for their relationship to lapse during the early and middle years of adulthood. Often, what brings siblings together in later life is the need to care for their parents. Brothers and sisters who have not had much contact for years may find themselves working together to coordinate care for one or both of their parents. Siblings View Caregiving Differently Most adults experience at least some denial of their parents’ aging process until a critical event forces them to reconsider the parents’ health and ability to function. How adult siblings handle the changes in their parents' need for care depends on the history of their relationship. If they have been close, the tasks tend to be divided more equally. In other cases, siblings tend to distance themselves emotionally from one another under the stress of caregiving. Old patterns of rivalry or conflict may arise. When conflict arises over caregiving responsibilities, it is often about an unequal division of tasks. Research has found that these conflicts are more common between sisters who assume the bulk of care responsibilities. It can be especially difficult when siblings have different perceptions of the parents' needs. These differences commonly have to do with conflict over whether the parent should be placed in a nursing home or remain at home, regardless of the sacrifices the rest of the family must make. Siblings may try to recruit the support of health care professionals involved in the parents' care. Sometimes social workers, doctors, and nurses hear two separate versions of the home situation, making it difficult for them to make informed recommendations. Types of Help Siblings Provide for Parents Siblings participate in caring for their parents in different ways requiring different skills and amounts of time. How they provide care and the amount of care they provide varies but typically falls into the following types of help: Routine help. An adult child may provide care for the parent on a daily basis. Backup help. An adult child may not be routinely involved in parent care but can be counted on for special emotional support or tangible aid when asked by the sibling who does give routine help. Limited help. An adult child may limit the help he or she provides to the parent. For example, a brother may leave most of the parent care to his sister while he takes responsibility for the finances. Sporadic help. An adult child may provide occasional assistance to the parent when it’s convenient. For example, a daughter who lives in another state may maintain little contact with the parent except to provide occasional help during a holiday visit. Dissociation. An [...]

Understanding Why Your Grandchildren Act The Way They Do—Suggestions For Grandparents Raising Grandchildren


All children go through what are called "stages of development." In other words, how children look, think, feel and behave changes as they grow and develop. Many things, including a child's genetics and physical makeup, play a role in this change. A person's childhood experiences also play a role in how a child acts. For this reason, being raised by a grandparent can affect a child’s development. Children’s development falls into four main areas: 1) physical and motor development; 2) cognitive, or thinking, development; 3) social and emotional development; and 4) communication and language development. Children develop in these areas in fits and starts, not in one smooth pattern. In general, though, they show similar behaviors at certain ages: birth, six months, between six months and one year, between a year and two years, between two and three years, between four and five years, between five and seven years, and and between seven and eight years. Other similarities in development can be seen as children continue to grow and enter adolescence. Children Living with Grandparents May Need Extra Help Grandparents caring for their grandchildren may notice that children have problems or get "stuck" in a developmental stage. They may also have "delayed development," meaning they're behind, or not doing things they should be doing at their age. For example, a three-year-old should be able to speak in simple sentences. Not talking or using only a few words may be a sign of delayed development. Because of their difficult histories, children living with grandparents may be likely to have developmental delays or problems. The children, and their grandparents, may need extra help coping. For grandparents, caring for a child with developmental delays can be physically, emotionally and financially draining. Developmental delays can also lead to health, school and family problems. Grandparents caring for children with developmental problems may want to consider seeking professional help from therapists, doctors or teachers. Good Relationships Lead to Healthy Children While grandparents should be on the lookout for developmental problems, they should also work to ensure their grandchild develops good relationships with friends and family members. Why? Because healthy relationships are key to a child's development and have long-lasting benefits. They can result in a secure, well-adjusted child who is able to cope with life's ups and downs. Relationships with parents and grandparents, especially if the grandparents care for the child, are extremely important. Pivotal relationships like these, which a child forms with the most special people in his or her life, are called "attachments." Children may form an attachment with parents, grandparents, aunts, uncles, siblings, babysitters and others. By the time a child is 18 months, he or she usually has formed attachments with a few special people. Researchers have studied four types of attachments: one type is secure, three are insecure. A positive, or secure, attachment relationship has these qualities: it is sensitive, loving, stable, open, responsive, trustworthy and affectionate. Children who experience healthy, or secure, attachment relationships have been found to [...]

Mental Health Issues of Grandparents Raising Grandchildren


Grandparents who step in during a family crisis to rear their grandchildren are often unprepared for their new role. Grandchildren frequently come to live with them bearing scars of abuse and/or neglect that can result in emotional, learning, and behavior problems. Grandparents may have ambivalent feelings about taking on parenting a second time around. This is because they need to make a shift from being grandma and grandpa to being mom and dad. Additionally, navigating the many educational, legal, social, and health care systems can be daunting. It is not surprising, given the complex stressful and often tragic circumstances faced by grandparents rearing grandchildren, that these caregivers experience more symptoms of depression than grandparents who are not rearing grandchildren. Stressors reported by many grandparents are lack of access to support services and financial issues. Many grandparents are retired or nearing retirement and live on limited incomes. When a grandchild enters the household, costs can increase significantly, especially if the grandchild has special needs. Some research finds that grandparents with fewer financial resources experience greater depressive symptoms. Grandparents raising grandchildren often have to choose between their jobs and their families. Some, who are retired, return to work to make ends meet. Others who were working outside the home prior to rearing grandchildren have had to quit their jobs due to the high cost of child care and/or the special needs of the grandchild. These shifts can contribute to grandparent fatigue and depression. Grandparents who have greater parenting stress are more susceptible to depressive symptoms. Parenting is a tough job in the best of circumstances. Grandparents who are called upon to rear their grandchildren face more challenges than most first-time parents. Research has found that those grandparents who have more recently taken on the role of caregiver have more depression than those who have been in the role for a longer period of time. The transition to the new family structure takes time. All family members are adjusting to the new situation and roles. Understandably this is a time when grandparents would experience more stress and depression. If you are a grandparent raising a grandchild, take care of yourself physically and emotionally. Here are some tips: See your health care provider on a regular basis. Consider seeking out mental health services for yourself and your grandchild. Recognize that you may be experiencing grief and loss due to your circumstances. Consider taking parenting classes for an update on raising children. Seek financial assistance through your local social services office. Join a support group to broaden your social network. If you would like to learn more about depression, you might want to visit a learning lesson: Recognizing Depression in an Older Adult References: Bailey, S. J. & Letiecq, B. L. (Summer, 2008). "The mental health of rural grandparents rearing their grandchildren." Focal Point: Research, policy, and practice in children’s mental health. 22-25: Index# 228760. Portland, OR: Portland State University Research & Training Center. Letiecq, B. L.,[...]

Loss and Grief


If you are a caregiver who has lost someone, then you already know that the feelings of loss and grief are complex. Information may be helpful to you as you sort through this challenging time.


Conducting a Kinship Family Retreat


A guide for assisting professionals in designing & implementing a retreat for kinship caregivers & their children. This is a guide for assisting professionals in designing and implementing a weekend retreat for kinship caregivers and their children. These retreats provide a safe, stress-free setting for family members to spend time together and strengthen their relationships. The retreat setting is removed from the system of social service agencies that many relative caregiver families deal with weekly. Families participating in the retreats tend to appreciate not having to think or worry about treatment, therapy, or referrals. They are not there as “families in need.” They are simply families spending some quality time together. As one grandparent put it after participating in a retreat organized by Penn State Cooperative Extension in 2008, “It’s been a weekend where we’re all the same – we’re all normal.” Another grandparent summed up the impact on her family, “We have just become a complete family.” Retreat Goal: To provide a stress-free setting, over the course of a weekend (start time Friday evening and ending on Sunday Noon) for kinship family members to spend quality time together and to identify and build upon their strengths through participation in a series of shared educational and recreational activities. Target Population: The retreat is designed for families with grandparents and other relatives raising children. The children should be at least 3 years old. Key Objectives: Provide kinship care family members with a family-oriented recreational experience. Strengthen the communication skills of kinship care family members. Enhance kinship care family members’ knowledge in relevant subject areas, such as parenting techniques, dealing with the legal system, reducing stress, and finding and accessing needed services. Establish a network of kinship care families to provide information (e.g., issues of services, legal matters, etc.) and family-to-family support. Planning Start to plan early. At least one year in advance of the retreat is not too soon to begin planning. One or even two years may be needed to reserve a retreat facility. Funding sources may also only accept proposals at specified times throughout a year. Once a date is established, you can begin early marketing and publicity for the retreat; for example, a “Save the Date” announcement lets people learn about the retreat and gives them time to develop their own plans to participate. A strong marketing effort will send a message to the public that your organization is serious about providing services for kinship families. Lay the groundwork Develop proposal and budget. Grandparent caregivers face a number of personal concerns, including loss of time for themselves, isolation from friends, and the many challenges associated with suddenly becoming a parent to their grandchildren. In a focus group study conducted with grandparents who are raising grandchildren by the Grandkin Raising Grandkids Program of Generations Together of the University of Pittsburgh and Penn State Cooperative Extension, participants identified r[...]

Loss and Grief - Losing a Parent


The loss of a parent is the most common form of bereavement, and even as adults, we are seldom ready for the death of a mother or father. Regardless of our relationship with our parents, we will always be their children. Whether one is ready for it or not, the death of a parent can bring many losses and changes. Who else will remember the first words you spoke, or the way you used to sleep holding your teddy bear? There are typically other losses, too, such as the long-term friendship of adult child and parent, the helpful advice, the emotional support during hard times, and the parent’s home where numerous holidays and celebrations have taken place. It is not unusual for some people to express feelings of being orphaned when a parent dies. Often the most daunting change upon the death of our parents is the realization that we have now become the older generation. The death of a parent brings a keen reminder of your own mortality-—a shock that often promotes a healthy reevaluation of one’s life and values. Don’t deny your grief or run away from it. Accept that you are grieving and allow yourself to be open to your feelings in the present moment. Know that it’s okay to cry, to be angry at your loss, and to enjoy the fond memories you have. What’s most important is to let yourself genuinely feel and express your unique experience of grief, to follow your heart and be true to yourself. Sometimes a counselor can be helpful when creating a life without a parent or parents. Adapted with permission from GriefWorks, Sam Quick, Professor Emeritus, Human Development and Family Relations Specialist, Kentucky Cooperative Extension Service.     Click One of the Links Below to Find Out More Information on Loss and Grief Introduction Signs of Death Denial of Dying Grief Comes with Many Emotions Losing a Parent Coping After Suicide Activities to Help You Grieve Support Groups Holidays Talking With Children Unexpected Death [...]

Loss and Grief - Unexpected Death


When death occurs unexpectedly, survivors are typically in a state of shock. It’s later that they begin to feel the full impact of the loss. At this time, any expression of grief is important. Initially, listening is probably the greatest gift you can give your friend. Let her know that she and her feelings are important to you and that you’re willing to be there for her in whatever way she needs you. Do not hesitate to speak her husband’s or special person’s name or to talk about the person. Let her know how much the person meant to you and to others. It will be meaningful for you to share your memories of the person with her. If you feel it’s appropriate, ask how you might help organize activities related to the funeral. It’s best to avoid offering advice. Instead, guide her gently or serve as a sounding board as she makes decisions. You might help with activities such as: Contacting your friend’s spiritual leader. Notifying extended family, friends, or business associates of the death and funeral arrangements. Arranging overnight stays for guests; deciding who will meet those arriving at the airport. Listing tasks: errands to be run, purchases to be made, phone calls to be made. Preparing and/or coordinating food for guests. You may wish to help organize a system for keeping track of acts of kindness from family and friends. Note who brought food and flowers. Keep track of phone calls with expressions of grief. Organize cards. As the pace picks up, join with others in following through on planned activities. The weeks and months to come will likely be very lonely and demanding. Your friendship can help significantly as your friend copes during this difficult time. For more information see: Is There Anything I Can Do? Helping a Friend When Times are Tough (1994) by Sol Gordon Adapted with permission from GriefWorks, Sam Quick, Professor Emeritus, Human Development and Family Relations Specialist, Kentucky Cooperative Extension Service.   Click One of the Links Below to Find Out More Information on Loss and Grief Introduction Signs of Death Denial of Dying Grief Comes with Many Emotions Losing a Parent Coping After Suicide Activities to Help You Grieve Support Groups Holidays Talking With Children Unexpected Death [...]

Loss and Grief - Denial of Dying


Dying is a complex psychological experience. It’s very difficult to think about losing a person you care about. The dying person’s sense of loss is even greater; he faces losing not one special person, but everyone he cares about. He also feels the loss of opportunity, favorite activities, familiar places, and valued possessions. The thoughts and feelings of dying people probably differ widely. For most people, the thought of death and dying can be very frightening as they think of: Giving up family, cherished friends and a familiar lifestyle; Giving up jobs they identify with; Being unable to complete tasks or tie up loose ends; Losing independence; Feeling pain; Not knowing what comes next, what else will be endured, or what death is like. Years ago, Dr. Elisabeth Kubler-Ross outlined five emotions many people go through after learning they will die. They are: Denial. Refusing to believe the news. Thinking, “no, not me.” Anger. Resenting what is happening. Thinking, “why me?” Bargaining. Attempting to postpone death. Thinking, “yes, me, but first I need to …” Depression. Realizing all the losses s/he will face. Thinking, “what’s the use.” Acceptance. Coming to terms with the reality of death. Thinking, “I’m ready now.” A dying person might not experience all these emotions, might combine some, or might move in and out of them. When someone denies his eventual death, allow him time to experience the different emotions. Let her know, through your actions and words, that you’re willing to talk with her about her illness. Some people may remain in the denial stage until death, as that may be their way of coping. They may also, in some way, be trying to protect you by acting as if everything is fine. By showing that he can be open with you, you’ll give him permission to talk when he’s ready. For more information see: On Death and Dying (1969, revised in 1997) by Elisabeth Kubler-Ross Living Fully in the Shadow of Death (2004) by Susan Zonnebelt-Smeenge and Robert C. De Vries Talking About Death (2001) by Virginia Morris Adapted with permission from GriefWorks, Sam Quick, Professor Emeritus, Human Development and Family Relations Specialist, Kentucky Cooperative Extension Service.     Click One of the Links Below to Find Out More Information on Loss and Grief Introduction Signs of Death Denial of Dying Grief Comes with Many Emotions Losing a Parent Coping After Suicide Activities to Help You Grieve Support Groups Holidays Talking With Children Unexpected Death [...]

Loss and Grief - Coping After Suicide


Most survivors of suicide are left with lots of unanswered questions. As a result, the grief is much more complex. It’s important to remember that while the healing process after such a devastating loss will not be easy, it can be done. How to Cope If you allow yourself to experience and express your feelings, reach out to those who care about you, and draw upon your inner resources, you will survive. There will be very difficult times, but over time, the pain will lessen. Gradually, you will heal and grow. It’s often said that the only way out of your grief is to allow yourself to go through it. Time alone will not heal your grief. It’s best to let yourself surrender to your feelings and learn from them. Don’t fight what you’re experiencing, no matter how painful it may be. Grief is a natural process that cannot be rushed. Allow it and trust that this is nature’s way of healing. Some people are tempted to hide the fact that their loved one died as a result of suicide. It’s best not to keep the suicide a secret or tell half-truths. Instead, talk openly about your family member and your thoughts and feelings about his/her death, even if it’s hard to put words to what you’re experiencing. If, over time, you find it difficult to face your feelings and thoughts about the person you've lost, it might be wise to seek professional help. According to grief expert Rabbi Earl Grollman, seek professional help if: You continually feel hostile toward people you once cared about. You are uninterested in anything and everyone. Your health is suffering. You are relying more and more on drugs or alcohol. You are avoiding all social activities and wish to be alone most of the time. You are preoccupied with thoughts of suicide. Trained professionals who can help include hospice bereavement counselors, clergy, mental health counselors, clinical social workers, and family therapists. Don’t view asking for professional help as a sign of weakness. Rather, consider it a mark of courage, intelligence and willingness to move forward. Another option that many, many survivors find helpful is support groups. There are groups specifically for survivors of suicide, so everyone in the group knows what the others are going through. Your local hospice or mental health center should be able to help you find a group in your community. The American Association of Suicidology may also be a useful resource. Contact them at 202-237-2280 or visit their website: Guidelines to Consider As you move into and through your grief, these guidelines may help to ease your way: Breathe! This may seem common sense, but in the stress of grieving, many people tighten their muscles and find it difficult to breathe deeply, smoothly and freely. It’s helpful to stop occasionally and take several slow, deep breaths. As you go through your day, stop and notice your breathing. Take good care of yourself. You’ve been through an extremely difficult time, so you need to give yourself special care. Be gentle, understanding [...]

Rewards of Caregiving


Caregiving for a family member can be full of challenges and frustrations. But people who have been interviewed about their caregiving experience--during or after the fact--often report some surprising positive outcomes and observations. A few of the more frequently mentioned rewards include: Time With the Person Needing Care Caregivers often report appreciating the increased hours with a family member. In some cases, caregiving offers opportunities to talk about important and unimportant things, time to get to know each other better, share family stories and history, make decisions and plans for the future, laugh together, and create new memories. Some caregivers who provide hands-on personal care say that the intimacy of their roles enhances the bonding experience. In some cases, time together can help improve or heal relationships and bring needed forgiveness or reconciliation. Improved Relationships With Other Family Members Who Share in the Caregiving Caregivers sometimes report that they get closer to their siblings or other relatives while collaborating in the care of another family member. Although much has been written about the conflicts in “sharing the care” and the division of labor within families, those who have worked through this with some success find that it can bring families closer. Collaborative caregivers have or make the opportunity to communicate more often about the care situation and end up with a clearer view and understanding of the other caregivers’ daily lives. The Chance to Make a Difference Caregiving, whether motivated by love, compassion or duty, has an underlying moral quality to it, and can be very satisfying. For many, being there to take care of a family member in need is reward in itself. For some, caregiving is an opportunity to give back to a family member in return for gifts received over a lifetime. Some people also report how their caregiving has helped reinforce positive values in their children; these caregivers find they become role models in how to care for others. Connectedness With Other Caregivers The need to step into a caregiver role often catches us by surprise. Sometimes it comes in response to a crisis; sometimes it sneaks up on us gradually—but few people prepare for it. At first, many caregivers think they are alone in this role, and most are surprised to find out that there are so many others in the same situation. When people attend educational or support groups, they realize they are not alone and can share the challenges and rewards as well as ideas for coping and practical information on caregiving. This not only increases their identity as caregivers, but also can make them more understanding and supportive friends and advocates for other caregivers. Personal and Spiritual Growth Reflecting on the caregiving experience, many people report a sense of accomplishment at sticking with caregiving despite confusion, stress and fatigue. Some report how much they have learned from the experience, from others, and fro[...]

Warning Signs of a Stroke


What is a Stroke? Stroke is the third leading cause of death in the United States after heart disease and cancer. A stroke happens when blood cannot flow to a part of the brain. When the brain does not get the oxygen and nutrients it needs from the blood, its cells are damaged or begin to die. If brain cells are only damaged, they sometimes can be repaired. But brain cells that have died cannot be brought back to life. There are two major types of strokes: ischemic and hemorrhagic. Ischemic stroke is caused by blood clots or the narrowing of a blood vessel leading to the brain. The clot keeps blood from flowing into the brain and prevents needed oxygen and nutrients from reaching brain cells. Hemorrhagic stroke happens when a broken blood vessel causes bleeding in the brain. This break also stops oxygen and nutrients from reaching brain cells. Signs and Symptoms Signs and symptoms of a stroke may include but are not limited to: Sudden numbness or weakness in the face, arm or leg–especially on one side of the body Sudden confusion, trouble speaking or understanding Sudden problems seeing in one eye or both eyes Sudden dizziness, loss of balance or trouble walking Warning Signs The warning signs of a stroke may last only a few minutes and then go away. Always pay attention to any stroke symptoms, even if they are fleeting. If you suspect someone may be having a stroke, the National Stroke Association recommends you act F.A.S.T.: FACE – Ask the person to smile. Does one side of the face droop? ARMS – Ask the person to raise both arms. Does one arm drift downward? SPEECH – Ask the person to repeat a simple sentence (e.g. “It’s sunny today.”). Are the words slurred? Can the person repeat the sentence correctly? TIME – If the person shows any of these symptoms, time is important. Call 9-1-1 immediately! Summary A stroke may have serious consequences for your health or the health of a loved one. For more information on how to help when health fails, visit To rate your risk of cardiovascular disease, visit For an interactive tutorial about stroke from the National Library of Medicine, MedlinePlus, visit [...]

Principles in Responding to Behavior of Persons with Alzheimer's Disease


“I don’t understand it. My mother thinks our granddaughter is her ‘baby’ daughter. She doesn’t seem to recognize me as her daughter and calls me Inez, which was her sister’s name.” “My wife does not recognize herself when she looks in the mirror. Sometimes she points ‘at that woman’ in the mirror and then accuses me of having an affair. At other times, she says, ‘That’s an ugly old woman.’ I don’t know what to say or do.” “My father talks about his Dad coming to take him fishing. When I try to tell him this can’t be true, he just gets mad and accuses me of lying to him. I am at my wits end and don’t know what to do.” “When I told my aunt that her husband could not come to see her because he has been dead 25 years, she got very upset and cried inconsolably.” These situations are common when a person has a dementia such as Alzheimer’s disease, and they can be challenging for the caregiver. Such behavior is a reality of the disease, and it needs to be understood--not taken personally. There is no one best approach that is guaranteed to work with every person; however, keep in mind the following principles when dealing with the challenges of caring for someone with dementia. Difficult Behavior is Not Willful People in the examples given above are not intentionally being difficult. If you view their behavior as being done on purpose, it will only create a self-destructive pattern of anger and frustration. Try to understand the "why" of the behavior—there is a reason for it. Behavior usually does not occur in a void. The Person is Always Right - Right from His/Her Point of View As the disease progresses, trying to convince a person that you are right and he is wrong will usually only create agitation and anger. And, you may only convince the person that you are someone not to be trusted. Try to step into the world of the person with dementia to understand his perceptions, thoughts and feelings. For example, to a woman who no longer recognizes herself in the mirror, it may seem as though another woman is in the house. A tree branch hitting against a window when the wind blows may seem as though someone is “trying to get into my room.” A radio or TV talk show playing in an adjoining room may seem like people are in the next room. The brain loses the ability to learn and to record information and events in dementia Early in the disease process, Alzheimer’s disease steals the brain’s ability to record information and events. Thus, the person can no longer remember a major event that occurred in their life the day before, information shared, instructions given, or an agreement made just minutes earlier such as agreeing to wait at a specific place while the caregiver goes to the restroom. The Past Becomes More Real and Lovable Than the Present As Alzheimer’s disease progresses, it increasingly erases stored memories. “Today” for the person may be what was occurring 10, 20, or 40 [...]

Caregiving Is Different for Everyone


As America ages, more of us will find ourselves caring for a spouse, partner, parent, other family member or close friend. In fact, family members and friends provide about eighty percent of long-term care in our country today. The high cost and shortage of trained caregivers, the desire to provide personalized care within the family, and the varied and changing demands of caregiving, all mean that more people are learning new skills and making adjustments in personal, family, and work life as a result of caregiving responsibilities. Uniqueness of Caregiving Experiences Caregiving experiences are just as unique as the people involved. Each caregiver has different needs, feelings, challenges and rewards. And each family member's relationship with the care receiver is unique, influencing expectations and the overall caregiver experience. Much has been learned about the differences in these experiences as the result of a growing body of research. For example: Men tend to think about and approach caregiving differently than women. Husbands and wives differ from adult children or other relatives in what they do, how they do it, how long they do it, and when they consider letting others help. Each of us forms personal expectations of ourselves as caregivers. These expectations are shaped by past experiences and observations, societal rules, our cultural heritage and our own family rules. Caregiving can affect us in multiple ways. It can cause changes in physical and emotional health, finances, and time available to participate in other family, social, work, leisure or community activities. Caregiving can be stressful at times. Yet, people who perform the same task may have very different experiences. One person might feel very uncomfortable emptying a commode, while someone else may not give it a second thought. Caregivers also experience different types and levels of stress over time. Rhonda Montgomery, PhD, has been studying family caregiving experiences for more than 20 years with her colleague Karl Kosloski, PhD. Out of their work has emerged a theory called Caregiver Identity Change. In essence, it says the caregiving experience over time involves a systematic process of change--in activities, responsibilities, and in the partner-like relationship between the caregiver and person receiving care. It also involves a change in the way the person giving care views him- or herself in relation to the person being cared for. This new role grows out of the earlier relationship between the two care partners. The Caregiving Journey Changes You The caregiving role unfolds over time as the caregiver takes on greater responsibility--helping with everyday household affairs, personal care and decisions. Caregiving involves an identity change process. At some point, the person providing care begins to identify himself or herself as a caregiver in addition to being a wife, a son or other kind of relationship. The journey i[...]

Loss and Grief - Support Groups


Support groups can be very helpful since they bring together people with a common bond to share and encourage one another. There are many different types of support groups, with different formats and sizes. The common thread is that you’re all there to have a safe place to share your struggles, losses, hopes and successes with others who share a similar life experience. We know that for many people, talking helps. Listening helps as well, since helping others often enables you to better understand your own feelings. This is especially true of support groups for people who have lost a loved one. Even if you seem to be handling grief well, you still might benefit from the caring friendship a support group can offer. And, you may also gain from helping others. If you’re unsure whether a support group is right for you, you might consider trying a meeting and seeing if it’s a good fit. There are a number of places to go to find a support group. Most hospices offer grief support groups, so you could check with a local hospice. A local mental health center may also offer grief support groups, as do some churches and hospitals. The healing process following the death of a loved one is unique for everyone. It’s a process that involves times when you need to be alone with your grief, and times for sharing and support. As you reach out to others for support you realize that you need not be alone with your sorrow. For more information see: The Understanding Your Grief Support Group Guide: Starting and Leading a Bereavement Support Group (2004) by Alan Wolfelt Adapted with permission from GriefWorks, Sam Quick, Professor Emeritus, Human Development and Family Relations Specialist, Kentucky Cooperative Extension Service.     Click One of the Links Below to Find Out More Information on Loss and Grief Introduction Signs of Death Denial of Dying Grief Comes with Many Emotions Losing a Parent Coping After Suicide Activities to Help You Grieve Support Groups Holidays Talking With Children Unexpected Death [...]

Stories About Grandparents and Grandchildren


A Grandma's Garden Moving into the city a few years ago, I never thought I would have the opportunity to plant a vegetable garden with more than a few vegetables. But to my surprise, right smack in the middle of a residential area (just a few blocks from my home) I found a community garden just waiting to be worked and planted. So along with my two and a half year old grandson, we weeded several plots, planted seeds and plants. He shoveled a lot of dirt with his little sand shovel, making piles everywhere, but having a great time. His little fingers were just the right size to push seeds into holes. Once the seeds and plants were planted it was time to water. As the official waterer, my grandson got most of the garden wet-- along with most of himself. He really enjoyed squirting the water everywhere. Then we sat back to watch the seeds grow. It wasn’t long before we could see small seedlings. We had lettuce and sweet peas early on. Later we planted the other vegetables. The tomato plants now have many little green tomatoes on them. We have bell peppers, chili peppers and onions forming, but not yet big enough to pick. Ready to pick now are the zucchini and green beans. My grandson will eat the green beans right off the plants. Maybe this is one way to get kids to eat vegetables! How fun it has been not only to produce the vegetables, but to watch the excitement of my grandson when we go to the garden and see what is happening each day. He has become an expert waterer, getting enough water on the plants but mostly on himself. Yet the fun we have exploring the various vegetable plants to see what we can pick is wonderful. My grandson is developing into a young gardener, not only learning to appreciate where vegetables come from and the need to care for them, but also learning to appreciate our time together and the wonderful taste of fresh food. Last summer I pushed him to the garden in a stroller; this year he will either walk or ride his little trike with a small compartment on the back to bring home those vegetable that he hasn’t eaten yet. This gardening experience is making memories, not only for me but for my grandson as well. Planting the seeds, seeing something emerge from the soil, then get bigger and turn into something delicious are memories that will last a lifetime. I am sure glad I have the opportunity to experience this with him and I know he is enjoying the experience with me. A Grandmother's Three Dollars You often hear today that money doesn’t go as far as it used to. This may be true, but let me share a grandmother’s story. On a sunny Saturday morning in early spring, a grandmother takes her two-year-old grandson for a walk across the park to the neighborhood coffee house where they purchase the usual medium decaf coffee and one blueberry muffin costing three dollars. Coffee is for Grammy and the blueberry muffin is for the grandson wh[...]

Where Older Adults and Their Caregivers Live


Only about 5% of adults over age 65 live in a nursing home, with another 2% living in some other type of group quarters.

Nursing homes are the most common institutional setting for older people, with over 90% of institutionalized elders in the United States living in nursing homes. However, as mentioned above, less than 10% of adults over age 65 live in a facility at any given time. In fact, more than half of those who require care reside in their own homes.

Most caregivers live near the person for whom they provide care. About 25% of caregivers report living in the same household, 40% report living within a 20-minute drive, 20% report living within an hour's drive, and the rest live more than one hour away.


Family Caregiving is Everyone's Business

Am I a Caregiver?

Other Family Caregivers

Family Caregiving Is Important

Future Caregivers

The Cost of Caregiving

The Family Cost of Caregiving

Where Older Adults and Their Caregivers Live

Dementia Caregivers

Support for Caregivers

Caregiver Resources

Reference List and Downloads

Loss and Grief - Talking With Children


Children learn about death through those around them and how others react to the loss of someone special to them. The best thing to do is to give an honest, simple explanation of why the person died. What you’ll say to children should depend upon their ages. Young children think very literally, so speak simply and directly. It’s okay to say that grandpa died. Don’t say that he’s lost, that he left, or that he went to sleep. This will be confusing to a young child. If the child asks for more information, use simple medical terms to explain that grandpa died of cancer, or heart disease, or a stroke. If you don’t know the answer to a child’s question, simply say so. Children don’t need a lot of detail; they just need your honest response. Guidelines to Consider In general, follow these developmental guidelines in discussing death with children: Infants. Children under a year old seem to have very little awareness of death, but do experience feelings of loss and separation. Infants might show similar signs of stress as an older child or adult who is coping with loss: crankiness, eating disturbance, altered sleep patterns, or intestinal disturbances. Toddlers. Children between the ages of one and three generally view death as temporary. That’s why it’s very important to state simply and directly that the person has died and to explain what that means.You might say, Grandpa died and he won’t be with us anymore. Young children. Children between the ages of three and six might believe their thoughts, feelings or actions can cause death. Feelings of responsibility and guilt can arise. It’s important to tell children what caused the death and be attuned to any sense of responsibility the child might convey. You might say, Grandpa died today because he had cancer. Cancer is a disease that made it so Grandpa’s body couldn’t work anymore. Older children. School aged children begin to develop a more mature understanding of death, seeing it as both inevitable and irreversible.You might say, Grandpa died today from cancer because his body couldn’t function anymore without assistance from machines. Teenagers. Teenagers are going through many changes and life in general can be very challenging. During a time of loss and mourning, let your teenager know that you’re there for her/him. Be present while also allowing space and privacy. Respect your teenager’s feelings, listen well, and let them teach you about their grief and how you can help.You might say, Grandpa died today from his cancer. If you have questions about how Grandpa died or want more information, remember that I am here to answer your questions or together we’ll get answers to your questions. Sometimes talking about Grandpa’s death may make it easier for you—-I know it does me. Each child is uni[...]

Why Won't My Grandchild Behave


Grandparents raising grandchildren can become frustrated when children misbehave. Parenting children who have experienced a trauma requires patience. Almost all grandparents raising grandchildren are doing so due to a family crisis or loss. Often the children have experienced abuse, neglect, or loss of a birth parent. Living through such events influences how children develop and handle their emotions. Children may feel totally out of control of their world and try to take control whenever they can. Young children may go back to behaving like much younger children, such as wetting the bed, sucking their thumbs or carrying around a blanket. Some may have frequent temper tantrums. This is their way of coping with the chaos in their lives. As a grandparent, you may need to be patient and support them as they struggle with these changes. Some children will exhibit behaviors you have not seen before. For example, a grandson who hoards food in his bedroom may be doing so because he does not know if there will be food the next day. A granddaughter who lies excessively may have learned that this is acceptable behavior. She may have learned that even small “normal” childhood lies resulted in severe or inconsistent discipline. Other children will be disobedient about everything, straining the patience of the grandparent. These children are responding to life the only way they know how. They have had to learn ways to be safe when they lived in a situation that was not safe. Rather than punishing them for such behaviors, these children need added attention, rules for appropriate behavior and love. What is a Grandparent to Do? Watch to see if there is a pattern when your grandchild misbehaves. Does it occur when she is afraid? Does it happen after she has seen or talked to her birth parent? Does she become upset when there is a change? By looking at what is happening prior to the misbehavior, you will have a better idea of what the child is feeling. Give your grandchild control where possible. Allow a child to make decisions in areas that are appropriate. For example, he could decide what clothes to wear, or how much and which foods served at dinner he will eat. The “clean plate club” is no longer recommended. For older children, discuss with them what rules would be appropriate; for example, establishing curfews. This will help your grandchildren learn a sense of responsibility. Reflect on your own experiences to see if your reaction triggers misbehavior in your grandchild. Our own emotions around events that have occurred in the past influence how we respond in stressful situations. For example, does disobedience in a child remind you of how you were treated when you were young? Does this make it hard for you to respond objectively? Develop a daily and weekly routine for your gr[...]

Loss and Grief - Holidays


Many people who have lost a loved one experience more intense feelings of grief during the holidays. This is true of birthdays and anniversaries, too. Since you’re used to associating the holidays with good times and your special person, you’ll likely miss them even more at this time of year. You will likely still enjoy certain aspects of the holiday season, especially if you’re able to spend time with other family members and friends. It is helpful, however, to be prepared, stay flexible, and trust your ability to handle whatever situations arise. Handling the Holiday Season Allow yourself some time to feel sad or have a good cry. Be careful with excessive use of alcohol or medications. Try to keep on a routine. Eat as well as you can, get your rest, and maintain your exercise program. If you need some quiet time, take it. Some people feel that a change of pace is more helpful than old familiar traditions. Do you want to do something entirely different, such as spend the holiday at the beach or in the mountains where you won't be so acutely reminded of your loved one's absence? Set priorities. Grief is exhausting; know that you may tire quickly and save your energy for the most important things. If you aren't up to a large family affair, have a scaled-down event with a few close family members or friends. Delegate. Let others share the workload by helping with decorations and preparing food. Be prepared to receive correspondence from friends who have not heard of the death and may inquire about your loved one's health or activities. If you are by yourself, you may want to consider spending the day volunteering. The good feeling that comes with giving of yourself can be healing. Light a special candle to honor your loved one. Special prayers can be said in memory of your loved one. Look for a lecture or workshop on how to get through the holidays. Know that the anticipation of a holiday or family event often may be more difficult than the actual day. Allow yourself to enjoy the day if that’s truly how you feel. Give yourself something to look forward to after the holiday. At dinner, make a toast to the person who has died and invite others to do the same. This might be the time to share some personal belongings of your loved one with family and friends. Make sure people know you are going to do this ahead of time so there won't be an awkward silence. You might consider having a basket of gifts waiting for your family or friends--gifts from your loved one to each person. Bring photos of your loved one to the event and encourage family members and friends to tell stories or share memories. For additional tips on how you can help yourself during the holidays, visit:[...]

Building and Maintaining a Support Group


The Brookdale Foundation’s Relatives As Parents Program (RAPP) ( began in 1996. RAPP encourages the creation or expansion of supportive services to grandparents and other relatives who serve as primary caregivers of children because the parents are not able to do so. The program awards seed grants of $10,000 over a two-year period to state public agencies and local, non-profit organizations. Currently, RAPPs provide extensive services, primarily to relative caregivers caring for children outside the foster care system, in 45 states, the District of Columbia and Puerto Rico. Building and maintaining support groups are key pieces of the Brookdale RAPP Model. The objective of RAPP is to enable agencies to provide accessible, replicable, group and individual supportive services to relative caregivers beyond the two-year grant period. These suggestions have allowed RAPP support groups to build and sustain quality, cost-effective services for caregivers. Building Support Groups Responsiveness to Caregiver Needs and the Community Programmatic initiatives must be responsive to the needs of the relative caregivers that support groups seek to serve. Meeting dates and times should be regular, but flexible to accommodate caregivers. Regular meeting times also ensure that everyone, including caregivers and referral sources, know when the group meets. It is also important to give some thought to the group’s name. Some caregivers may not want to go to a “support group” but will visit “Chat and Chews,” “Coffee and Conversation” groups and groups that provide fun caregiver or intergenerational events like monthly “Family Spa Night” or “Family Fun Night.” When groups start, caregivers have a lot of questions about the myriad issues they face. Meetings that are informative and answer questions, about legal issues, available benefits and where to access those services, are very attractive and much appreciated. Caregivers will come to the group for the information provided. As the group grows and questions are answered, being responsive to the needs of caregivers means that support group facilitators listen to caregiver needs and respond. Since the group is constantly changing to address the needs of the participants, the group’s focus is constantly changing and this leads to continuity. Support group facilitators also address the needs of the community by bringing the issues faced by this special population to the attention of the community. RAPP state, local and regional initiatives have been very effective at educating professionals, legislators, caregivers and other advocates on the issues and needs of caregivers. Legislators, departments of social services, child welfare agencies, school[...]

Managing the Stress of Caregiving


Providing care for a family member can be a rewarding experience. It can also be all-consuming, leaving some caregivers exhausted and depressed. A study by The Center on an Aging Society at Georgetown University found that 15 percent of family caregivers report high levels of overall stress as a result of caring for an older family member or friend with long-term care needs. The study concluded that the stress of caregiving can have a negative effect on the health and well-being of both the caregiver and the care recipient, putting the care recipient at risk today and the caregiver at risk when he or she is older. Although most caregivers may cope well with stress, there are a number of things that would make their job easier. Access to information, education, and training on long-term care, technology, support groups, counseling, respite care, and financial assistance would benefit both the caregiver and care recipient. Family caregivers often have little or no preparation, support, or understanding about providing long-term care, which can make it an overwhelming experience. According to the study, most primary family caregivers are women (64 percent). Approximately four out of five who report that caregiving is stressful are women, and roughly three-quarters who report feeling "very strained" physically, emotionally, or financially as a result of providing care are also women. Nearly one in five (19 percent) report that their relative or friend requires constant attention. This can take away from time spent with family or friends, and limit social and community activities, hobbies, exercise, or vacations. On the other hand, the majority of primary caregivers do not report feeling stressed and many engage in activities to help them cope. Over one-third turn to prayer or meditation. Nearly two out of five (38 percent) report that they talk with family or friends when stressed. Almost half (48 percent) report that caregiving has made them feel good about themselves, and 47 percent say they appreciate life more as a result. Other studies have found that caregivers feel useful or proud, and many have improved relationships with the care recipient and other family members. The Impact of Stress In the last several decades there has been a great change in our understanding of how the mind and body work together. The word “psychosomatic” was once used to suggest that some physical illnesses were “all in your head.” Now it is understood that both the mind and body are involved. There is a complex interaction of social factors, physical and psychological stress, individual personality, and the ability to adapt to pressure. As a caregiver one can become overwhelmed with juggling the care of an eld[...]