Gail Answers Your Questions

SHEEHY: Q&A No. 5

By: Gail Sheehy | Source: AARP.org | April 2009

Q: My mom is suffering with some type of dementia. She refuses to accept, acknowledge, that she is getting forgetful, paranoid, and accusatory toward me, her only living relative. I am concerned she will not let me take over at the right time, and I don't even know when the right time is/was? Her doctor has asked me to sit with her while she organizes her medication for a heart condition, but she refuses. How can I get her to cooperate?
Thank you,

—Cheryl F.
Burlington, Mass

Gail: Dear Cheryl, Frustration is a normal and valid emotional response to the difficulties of being a caregiver—especially where dementia is concerned. You can't get past this typical barrier by yourself: Fighting with your mom about it will only make her more resistant. People in her state of mind are usually terrified that admitting to any problem may lead to having their independence taken away. Help is out there. You are not alone.

See my Web site at www.aarp.org/gailsheehy. Look for the video and journals about Keith Wolfard; he was in exactly the same position as you are. His wife's forgetful behavior was dismissed by three different doctors as not Alzheimer's, before they got a complete diagnostic workup at a medical center that dealt all the time with Alzheimer's.

You need a neutral third party, such as a professional social worker, or patient coordinator or her doctor, to sit with you and your mom and let THEM insist that she have a diagnostic workup. You are close to Boston and many top medical centers. The reason this workup is so vital is that Alzheimer's is very difficult to diagnose, and primary care doctors are not trained to do so. Many other conditions—like dehydration, urinary tract infection, sleeping medications, or conflicting prescriptions—can appear to be cognitive decline, but the symptoms you describe may subside once the root problem is addressed.

The Family Caregiver Alliance in San Francisco has focused attention on caregiving for dementia patients for the last 30 years. Their Web site has tons of information on skills and strategies to help you deal with this kind of frustration. Visit their Web site or call them on their national hotline 800-445-8106. One of the Frequently Asked Questions is: How can I deal with my family member's challenging behaviors without losing my patience?

The Alzheimer's Association is also a terrific resource. In some cities, the local chapter offers a patient coordinator and one-on-one family counseling, starting with the caregiver. They guide caregivers in your situation all the time. They also periodically offer a series of workshops for families of Alzheimer's patients. These workshops may also turn into a support group in which you can share your frustrations and discuss coping strategies.

Call the main chapter of the Alzheimer's Association in your state, in Watertown, Mass., at 617-868-6718. Good luck!

Q: I am a caregiver for a friend. She is 97 years young with no family. She does not qualify for Social Security or Social Security Insurance. She pays her health insurance to BlueCross BlueShield every month, and this leaves her $660 a month to live on. She has depleted her savings and now needs more money to live out the rest of her life. She lives in an apartment and pays $769 a month. She doesn't want to move, because she has lived there most of her life. I am at wit’s end about how I can help her. Can you think of something I can do? I don't know if she would qualify for Medicare or Medicaid. Please help me.

—Annie C.
Chicago

Gail: Dear Annie, Here is a number to call right away to see if your friend qualifies for any services: Chicago Department of Family and Support Services, Division of Senior Services, 312-743-0300. Stay on the line to speak to a live person and ask for help for your friend. It sounds like she may be eligible for Medicaid. Good luck!

Q: I am a 53-year-old cancer survivor with 11-year-old twins, a home, and a husband. Since January, I have been taking care of my 88-year-old mother, who told me it was time that I got her, since she can't cook, clean the house herself, or do anything anymore. Honored that she finally asked me, I am thinking ahead to when I really can't do it anymore, how do I go about getting Medicare to cover the cost for a nursing home; where do I turn to? This is all so new to me, and I want to do what will be best for my mom. She cannot read or write any language, and she totally relies on me for everything. I don't know where to start and how to get financial aid for her. Please help me.

—Aneesa K.
Eden Prairie, Minn.

Gail: Dear Aneesa, I would begin by calling your local Area Agency on Aging: Metropolitan Area Agency on Aging/Senior LinkAge Line in North St. Paul, Minn., 651-641-8612. Medicare does not cover the cost of a nursing home, but Medicaid does. Your AAA can tell you if your mom is eligible for Medicaid or how to spend down her resources to qualify her.  They can also lead you to services and programs that your mom may be eligible for right now.

Do you have any siblings that will share the care of your mom with you? A good Web site with lots of information for caregivers is the Family Caregiver Alliance in San Francisco. AARP's caregiving section of this Web site is also full of suggestions for how to reduce your stress while she’s with you now and how to plan for the future.

Q: My mother is 93 years old, and my husband and I moved down from our home up North to take care of her when my dad died two-and-a-half years ago. My question is, I have a hard time giving my mom a bath (she has to have a sitz bath), and I've noticed I'm putting the bath off for longer periods of time. Is there some help out there for us? She is on a fixed income, but she has insurance and Medicare.

—Kathleen D.
Bakersfield, Calif.

Gail: Dear Kathleen, You need someone else to help you. The resources below may be able to give you a home health aide to come into your home at the same time every week or every few days to help you with this task.  Your mom may come to look forward to it.

Have you ever called your local Area Agency on Aging? It is a one-stop shop for resources and services in your community. Perhaps your mom qualifies for assistance through Medicare (or Medicaid), if she has what’s called a "skilled need." To find the AAA closest to your home, call the Eldercare Locator, toll-free, at 800-677-1116, or visit the Web site.

Often a local church or organization will know of someone—either volunteer or paid—in your area who helps with activities of daily living, such as bathing, cooking, and the like. Senior home-care services are usually private-pay companies, but it might be worth contacting one or two and asking them what it would cost for help a few hours a week. Medicare.gov has a home-health agency search function. For your ZIP code, a search revealed nine agencies that would supervise a trained certified nursing assistant to help with bathing. The two nonprofit agencies are Adventist Home Care, at 661- 869-6700, and Mercy-Memorial Home Health at 661-632-5050.

There are many companies now focusing on gadgets and construction renovations that will make it easier for the elderly to stay in a home setting. You can find an expert in remodeling for declining physical abilities through the Certified Aging-in-Place Specialists, sponsored by AARP and the National Association of Home Builders.

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Q: Dear Gail, I am very concerned about a friend who has been immersed in taking care of everything for her parents, who have been in crisis for more than six months. Her father was diagnosed with Alzheimer's, and her mother is dealing with bad physical health and has been in and out of the hospital. My friend has a stressful job and drives at back and forth more that two hours (one way) at least once a week to take care of her family. I haven't seen her in about five months; every time I encourage her to take care of herself and take time for herself, she says she just doesn't have a moment. She has health issues of her own, and all of this came right after dealing with several other prolonged crises. She does have a very close and supportive housemate, and other family members are available, but as far as I can tell, she has isolated herself totally from everything except caregiving and trying to maintain her job. I have offered support and friendship, but I never hear from her except in a group e-mail about every three-four weeks.

—Karen A.
Decatur, Ga.

Gail: Dear Karen, Your friend is obviously overwhelmed. She doesn't have time to be a friend right now, which doesn't mean she won't come back. The best you can do for her is to be a heart with ears—listen if she needs to vent. Just keep letting her know you're at the other end of a phone or e-mail, if and when she just wants to come up for air.

In addition, if you have time to do something proactive, could you go to her home and mow her lawn as a surprise gift? Drop off a frozen-lasagna dinner with a note? Bring her some expensive lavender hand lotion, or a book on tape for her commute? With this attention, she might begin to trust that you're really there for her and open up more.

—Care B.
Mableton, Ga.

Gail: It is a wonderful thing that you want to care for your dad. This may be a time to call on your congressman, woman, or Senator, and ask for help from the "constituent caseworker" who communicates with federal agencies on behalf of people like you and your father. You appear to be in the 13th Congressional District, with Rep. David Scott, and Sens. Saxby Chambliss and John Isakson representing your interests at the federal level. Veteran’s matters are complicated, and an answer to your question should come from someone who understands the ins and outs.

Also, for your self-education, I have listed a few Web sites below that may answer some of your questions regarding Veterans Administration aid:

•    U.S. Department of Veterans Affairs
•    National Organization of Veterans Advocates
•    Disabled American Veterans
•    Warrior Assistance Program in Illinois, 24-hour, toll-free help line, 866-554-4927
•    A straightforward way to find out all the programs your father is eligible for is go to the tool called Benefits QuickLINK; it will walk you through a number of local and federal programs.

As a caregiver, you also need to think of yourself. The Family Caregiver Alliance offers good advice. Their Frequently Asked Questions offer tons of information.

In addition, the AARP Caregivers Resource Center features tips and information for family caregivers.

I wish you luck and remember, take care of yourself.

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Q: Are caregivers such as my daughter and her husband entitled to any monetary benefits for all the work they do for me in the home?

—Barbara L.
Marietta, Ga.

Gail: Dear Barbara, Not in the state of New York, where I live, and not in any state of which I'm aware. There are two things you can do: One is to talk to an elder law attorney to find out how to arrange your will or a trust to give your daughter and husband a significant part of your estate when you're gone. The other is to find out if there is any help for your daughter and son-in-law from public agencies. To find out, visit AARP's Benefits QuickLINK.

You can get an evaluation of your needs and find out what services are offered to relieve your daughter and her husband through your local Area Agency on Aging (AAA): Atlanta Regional Commission. Ask them what is available in your county and state. A home-health aide might be able to come for several hours a day to help you with cooking, cleaning, shopping, and bathing. You can find a Medicare-certified agency on the Medicare Web site. You may also be able to get respite care to give your daughter some time off while a volunteer takes over.

The AAAs are one-stop shops for resources to help aging Americans and their caregivers. It's worth a call to the one nearest you:

Atlanta Regional Commission
Atlanta, Ga. 30303
Phone: 404-463-3100
e-mail: cberger@atlantaregional.com
Aging Connection: 404-463-3333

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