Common Questions From Family Caregivers

Answers provided by:

Lisa Gwyther, MSW, LCSW
Duke Aging Center Family Support Program
Duke Employee Elder Care Consultation Service
Duke University Medical Center
(800) 646-2028
lisa.gwyther@duke.edu
http://www.dukefamilysupport.org

1. How do I get my mom to see a doctor? She’s just not herself, but she says she’s in a lot better shape than most people her age….

She may resist seeing the doctor because she is afraid a new diagnosis will mean a loss of valued independence or that her control of decision-making will be limited without her consent. Listen to her physical complaints during casual conversation – (digestion, back aches, no energy, poor vision) and suggest that there are “new” treatment options available that are worth exploring. Be confident that she can feel better. Suggest a new doctor, perhaps a specialist in geriatrics, if she distrusts her current physician. Offer to go with her. If you are concerned about her memory, be sure to let the doctor know about the memory problem in advance. Do NOT discuss your mother’s loss of ability in front of her, and be sure not to talk ABOUT her with the doctor as if she wasn’t there. Refer to these tips on choosing a doctor or on choosing an Alzheimer’s care team for assistance.

2. I’m alone in caring for mom, and I’m a single working mother. How can I get my brothers and sisters to help?

In many families, one person becomes “it” when it comes to care for aging parents. Being a responsible concerned daughter just means making sure that your mother’s needs are met. It does not mean doing everything yourself. It may not be practical to have each of your mother’s children spend equal time and effort in helping her, but equity or some sharing of responsibility is certainly a desirable goal. Fill a jar with single tasks required for your mother’s care. Ask your siblings to take on those tasks that they are able and willing to do. Don’t waste your emotional energy trying to convince an unwilling brother or sister to come forward. Perhaps your brother who lives away can make phone calls or go on the web to find services for your mom? Can a sister handle your mom’s health insurance, bills or taxes? Can your brother take care of her car or the sale of her home to reduce the number of things on your plate? Can your sister move in with your mom when you are away on vacation? A brief family meeting with an experienced counselor may help your family focus on “what’s best for Mom”, and avoid re-hashing old relationship problems. Contact the NC DHHS Division of Aging and Adult Services.

3. How can I convince my wife that I’m not having an affair every time I leave the house or that our children are not stealing from her? She was never like this before.

People with memory disorders often have delusions (false beliefs), especially about spousal affairs and family stealing. These false beliefs are not based on previous behavior, and it is NOT helpful to argue or offer rational explanations about missing items, money or infidelity. Memory disorders like Alzheimer’s are also “thinking” disorders. People living with these disorders can’t follow logical explanations and they forget what was just said. All they know is something is missing or they are afraid of being abandoned in a world that doesn’t make sense. The way to respond is to acknowledge the fear, reassure and re-direct the conversation to less threatening topics. “I know you’re scared, but we’re in this together. I will stick to you like glue. I’ll make sure your money is safe, but now it’s time for our dessert…”

4. Do y’all know any ladies looking for a good home? My grandma lives alone, and she keeps firing all the ladies we send in to help her. 

There is a mistaken assumption that home care is provided by homeless kind women looking for free room and board. Most live-in helpers are hired through agencies or recruited, paid and supervised privately by family members. Often, well-meaning families send in a paid companion to stay with a memory-impaired older person who is having difficulty living alone. People with memory disorders aren’t always aware that they “need” help, and they frequently resist strangers invading their privacy and offering unwanted help. She may continue to “fire” any volunteers, paid private or agency helpers. Consider an adult day program offering structured activities, meals and social opportunities as a less-threatening alternative to a stranger in the home. Call the national eldercare locator at (800) 677-1116 for referral to local aging services, refer to the National Adult Day Services Association for national links to adult day programs, or use your own contacts to find the right person to help – e.g. church newsletter ads, or local family caregiver information nights, seminars or support groups (good source for local consumer information on available help).

5. Are there any volunteer or sliding scale home care services? We can’t afford much.

Volunteers generally offer limited companion or sitting services, but little hands-on care, help with housework or transportation. Aging services programs generally have some cost-sharing option. Many families, however, find help privately, at less cost than agency-trained, supervised and licensed helpers. For an overview of local services and volunteer groups, call the eldercare locator at (800) 677-1116. For an overview of service eligibility and benefits for a specific disabled adult, try Benefits CheckUp.

6. Is it true what I read about husbands dying while caring for their sick wives? I’m afraid I’m going to lose both my parents to my mother’s illness. 

Research findings suggest that the strain of caring for a memory-impaired husband or wife increases one’s risk of depression, worsening of health problems, less time for oneself and even premature death. However, few committed family members are willing to “give up” responsibility or care for a beloved spouse or parent. What the primary caregiver needs is support and help in honoring his/her commitment.

7. Where can my parents live if I move them near me from up north? Their neighborhood is changing, and their friends say they aren’t making it on their own anymore. I read that moves cause older adults to die early.

Moves are upsetting and disorienting at any age, but particularly for frail, disabled or memory-impaired older adults. If the move offers more options for help and support, closer or more meaningful connections with valued family members or greater quality of life, then it is worth coping with the relocation trauma. Housing and housing with services options vary with location. It helps to talk with an aging services professional. Ask for the Information and Assistance person or Options Counselor at your county office on aging. A good review of housing and long-term care options in NC can be found at North Carolina Division of Aging and Adult Services.

8. What does the assisted living director mean by “they can’t meet my mom’s needs?!” She’s only been there two weeks, and they want me to find someplace else for her to live!

Non-nursing home residential care is not as strictly regulated as nursing home care. Services vary and even the facilities are called by a variety of confusing names – assisted living, adult care home, rest home etc. If a new resident is disoriented, confused or behaving strangely in response to a change in environment, the facility may face complaints from other residents or staff about your mother’s unreasonable demands of them. Perhaps your mother was forced to move there quickly in response to events, without fully understanding what services were offered. Assisted living facilities may charge extra for help that is routinely offered in traditional nursing home care. Unfortunately, this scenario is quite common. Take your time to explore all options, including bringing in private help for your mother in the assisted living setting. Check out your options with a long-term care ombudsman. Also, check the NC Friends of Residents in Long-Term Care website.

9. Do hospitals make older adults worse? My aunt is so demanding, helpless and ungrateful since she came home to live with my mom after her fall.

Hospitalization of a vulnerable older adult is frequently followed by a decline in function or independence in routine self-care, particularly if she experienced delirium or a period of acute confusion in the hospital. In general, people don’t exaggerate dependency – the need for help is real, but too much “helping” can be counter-productive. We know that being sick, vulnerable, in pain or recently disabled does not necessarily mean the person will become nice, grateful or resourceful. Depression and anxiety are also common following acute illness or injury, and depression limits a person’s energy for self-care and her ability to concentrate on rehabilitation goals. Ask her doctor for a referral to home health for a nursing evaluation of her current needs and how best to meet them.

Refer to the Home Health Care Compare website for information on agencies by state and county.

10. How can we get Dad to go to a support group? He says he doesn’t need a bunch of meddling women telling him what to do – God will show him the way.

Although a strong faith or belief system helps many people cope with adversity, that’s not what a support group offers. First, your dad may be more receptive to a seminar or information session on your mother’s illness or care needs. Some disease groups, like the Alzheimer’s Association and Dementia Alliance of North Carolina offer classes, seminars or workshops for families with no commitment to attend an ongoing group. A couple featured in a public TV special joined the Bryan Alzheimer’s Disease Research Center’s Person with Dementia and Care Partner Group which offers an opportunity to continue to participate in life as a couple, while participants have a chance to share good consumer information. Some people form their own support groups while waiting for treatment or participating in clinical trials of experimental medications. Some people turn to familiar groups for support, like Al-Anon, Sunday School Classes or their AARP chapter. Be sure your dad understands that support groups are not therapy or encounter groups – he can keep secrets, just listen, and there is no commitment to attend so many sessions. For some people, it is just comforting knowing that groups are out there “when they are ready.”

11. How can I get Power of Attorney for my mom away from my sister? She’s taking all Mom’s money and Mom’s bills aren’t getting paid.

It’s often surprising how quickly family conflict escalates around elder care. Individual family members have different perspectives on what and how much help is appropriate. If your mother is confused or memory-impaired, she may not be aware of her financial situation. Financial exploitation is a real risk, and the perpetrators are not necessarily limited to family members. Your mother gave her power of attorney to your sister, and only she can take it away. If you believe that your mother is at risk of financial exploitation or neglect, you should seek legal assistance from an attorney knowledgeable about mental health law or elder care. Check with your county aging information and assistance specialist or try this NC elder law clinic web site—Wake Forest University Elder Law Clinic.

12. Aren’t churches supposed to help their members in need? My mom has tended to the sick of the church all her life and now no one from the church offers to help her.

People in NC coping with illness or disability may turn first to familiar faith communities. Many people express surprise and disappointment when the congregation or church leaders don’t respond as expected. This is particularly true when a church member has a long, progressive or chronic illness rather than an acute hospitalization, short recovery period or brief terminal illness. Some families are successful using email or letters to key church or Sunday School friends, alerting them to an individual or couple’s situation and needs. This indirect strategy is much preferred by older church members who just expect their church community to respond without being asked. Also, the disabled older person and family caregiver may be afraid of rejection if they ask for help. In NC, some churches are forming “care teams” of up to 20 members who all agree to help a family in specific ways during a serious or terminal illness. For more information, see the Carolinas Center for Hospice and End of Life Care.

13. Do you have a list of nurses or people who sit with older people?

Most older people don’t require the skills of an RN or licensed practical nurse, and most families are unable to afford such care. Some county aging services keep lists of people who will provide companion services while the primary family caregiver has a break or “respite” from caring for a relative who cannot be left alone. There are also home care agencies and home health agencies offering staff with varying qualifications depending on the need. The advantage of agency services is that their staff have security checks, training, supervision and they can often provide a replacement if a given staff member is out.  Locate your county aging information specialist, or call the national eldercare locator at (800) 677-1116. You may also try the yellow pages under aging, health department, home care or county adult social services department.

14. How do you get older people not to spend so much time visiting the nursing home? Mom finally got Dad into a nursing home, and she’s still with him every minute. The nursing home doesn’t like her hanging around.

Family care and family responsibility do not end at the door of the nursing home. In general, regular family visitors enhance the quality of personalized care. But your mom may need to be there to meet her own needs to stay connected to your dad. Open visiting is her right as his wife, unless she is unintentionally harming him or putting him at risk. Perhaps she would feel less compelled to visit if she knew other friends or family could be counted on to visit in her absence. She may feel like she is in social limbo, feeling uncomfortable with old couple friends and groups. Encourage the facility staff to introduce your mother to other regular visitors. Many family visitors develop friendships and offer to visit each other’s family members when one regular visitor is away. Focus your efforts on supporting your mother and reassuring her that you and others will not abandon your dad or her. See The National Consumer Voice for Quality Long-Term Care for suggestions.

15. Isn’t there something on the web about how to take care of sick people at home? I don’t have time for workshops, seminars or support groups.

See our Links / Resources page.

Try these sites for care tips and links to email discussion groups, bulletin boards and chat rooms:

AARP
www.aarp.org/families/caregiving

Alzheimer’s information
www.alz.org and www.dementianc.org

Elder Care anywhere in US
www.eldercare.gov

Elder Care Online
www.ec-online.net

Family Caregiver Alliance
www.caregiver.org

Medicare, prescription drug assistance and compare nursing homes
www.medicare.gov

National Family Caregiver Support Program
www.aoa.gov/AoA_programs/HCLTC/Caregiver/index.aspx

16. Who decides about feeding tubes? The hospital wants to send my dad back to the nursing home with a feeding tube, but I’m not sure my dad would want it.

There are no cookie-cutter approaches to decision-making about care at the end of life. You need to know why the tube has been suggested, and for how long it might be used. Are there alternative feeding strategies? What has your father said or written in an advanced directive that would suggest his wishes? Are you his health care power-of-attorney? Perhaps a consultation from the local hospice agency would be helpful to you and the nursing home? Refer to Carolinas Center for Hospice and End of Life Care and End of Life: Helping with Comfort and Care.

17. How do you get a really stubborn man to stop driving? He gets lost and has had some fender benders, but he says he’s a better driver than any doctor who tells him not to drive.

Ask families of people who have had to stop driving, and you will find as many “right” ways to do it as there are families. If he has a memory problem, his last memory is that he is an excellent driver and you will not convince him otherwise. A family member can call (anonymously) the DMV and suggest that your dad be re-tested, but it is unlikely he will agree, show up, abide by their decision, and he may even pass the test! Taking his license away won’t stop him from driving. Some people respond to a doctor’s direction to stop driving “temporarily, or while you are having some tests or treatment”, and others stop driving if someone in authority tells them not to drive – a sheriff, minister, boss, or trusted family member. Sometimes it is necessary to be indirect – replace the key with one that doesn’t work, remove the distributor cap, take the car “in for repairs”, move the car or even sell it. Join your dad by telling him, “I don’t like this any better than you do, but we’re in this together and I’ll see you through.” Make certain he has adequate transportation to reduce the risk of isolation and frustration. But don’t cave in – he and his family could be held liable for accidents.

18. Do you have someone who can help my husband and kids understand why it takes so much time for me to care for my mom? I’m trying as hard as I can, but I’m not satisfying anybody in this family.

As we age, we take on a larger package of responsibilities and commitments to a larger number of family members. It is impossible for you to give equal time to all your family members. It is also true that people with chronic illnesses often get worse and need more help over time. But even adequate or “enough” help won’t guarantee that anyone is “satisfied.” It’s much easier to suggest solutions than to live those solutions. Try a caregiver support group, seminar on self-care, a book or go on-line and talk with other family caregivers. In NC, each area agency on aging has a family caregiver support program specialist.

19. Why am I so sad when my momma’s still here with me? My husband says to save the crying for Momma’s funeral after she’s really gone.

Many chronic illnesses are progressive – they get worse slowly over time. Although you may be familiar with the grief following death of a loved family member, no one is prepared for the grief that accompanies loss of the person as you knew him/her while they are still alive. This grief, bereavement and series of loss is painful, often prolonged and generally not acknowledged by close friends and family. It is different from what you will feel when she is actually gone. Talk to someone in a support group, a trusted clergy person, counselor or therapist. It may be a common reaction, but grief accompanying many losses over the course of progressive dementia does respond to understanding treatment.