LEARNING FROM ELDERCARE

January 2000
		As baby boomers age, so do their parents. Where can these caregivers go to find support and advice? Suzanne Mintz, president and co-founder of the National Family Care Givers Association, responds to your questions.

Financial assistance for caregivers. Support groups Excessive use of drugs. Moving out and moving in. Insurance coverage Working it out with siblings.     Focus: Exploring Eldercare Forum: Caring for our Caregivers Dec. 24, 1999 Learning from Eldercare, in RealAudio or RealVideo Extended Exerpts: Ezekiel Emanuel Extended Exerpts: Suzanne Mintz Sept. 28, 1999 Fighting Parkinson's Sept. 10, 1999 Dying with Dignity July 8, 1999 Research for Alzheimer's Jan. 4, 1999 Helping families with long-term care. Complete NewsHour coverage of health.     National Family Caregivers Association National Institutes of Health

More than 25 million people find themselves in a caregiving role every year, providing the equivalent of nearly $200 billion a year in unpaid care for their parents, spouses or neighbors. Approximately three fourths of all caregivers are women, and most do not get consistent help from other family members. How are they doing? Where can they go for support when they need it? What can an aging person do to ease the strain on their own future caregivers? Are you a caregiver? What questions or advice do you have? Suzanne Mintz, president and co-founder of the National Family Care Givers Association responds to your questions. George Ralph of Minnesota asks: What sort of financial assistance is there for caregivers? Federal or otherwise? We have a hard time caring for my father and working full time. Suzanne Mintz responds: Unfortunately there is not a national program that compensates caregivers. The President has just proposed a $3,000 tax credit for caregivers helping a loved one with at least three activities of daily living, or comparable cognitive impairments. You should let your representatives and senators know how important this is. Some states have programs that provide various types of caregiver support and you can check with the state department of elder affairs. Call the Eldercare Locator to find out the number of the area agency on aging nearest your home. That number is 1 800 677 1116. You might also try calling Catholic Charities, Lutheran Social Services, Jewish Family and Children Services. Many of these groups have some support services for caregiving families, although I doubt that they supply stipends. Medicaid is testing a program in several states (Minnesota isn't one of them) to test the viability of giving cash to people, instead of allowing them to only get certain services. Some of the test sites are allowing the money to be used to pay family members as caregivers. This won't help any of us now, but it can pave the way for some future reimbursement of family members serving as caregivers. If you need help paying for medications, contact PhRMA at 1 800 762 4636 or the Medicine Program at 1 573 996 7300. They might be able to help.   Consuelo Walker of New Mexico asks: I would like to see more information on support groups for families that care for elders and or look after the care that is given to them. Also on how to deal with what I consider excess use of drugs that treat only the pain at the expense of good judgement and with excessive side effects that are negative. Suzanne Mintz responds: Often county departments of aging/elder affairs run support groups for family caregivers. Check with yours. You can get their number from the local government listings in your phone book. Also the area on aging may be able to point you to some. Call the Eldercare Locator for the one nearest you at: 1 800 677 1116. Another place to check for support groups for caregivers is through the health agency that deals with your parent's condition (ie Alzheimers, Parkinson's etc.). Also the social worker at your local hospital might know of support groups in your area. There is an organization called Children of Aging Parents. They run some support groups and have information on caring for elders. Their phone number is 1 800 227 7294. Call between 9 -3 Eastern time. If you want to start a support group contact American Self-Help Clearninghouse at 971 625 7101. Also the National Family Caregivers Association (NFCA) has an article about what to look for in a support group. Send us a stamped self-addressed envelope along with a note and we'll send it to you. The second part of your question is harder to answer. I think it is important to be your loved one's advocate. Question the doctor when he/she prescribes new medication - why are they giving it? What is it supposed to do? What are the side effects? My loved one is on this and this - how will this new one interact with it? Be proactive. Don't be intimidated. Also get information on medications from your pharmacist. Sometimes they are more aware of possible interactions than physicians.   Sylvia Haskins of Salem, Oregon asks: I am 76 years old and live by myself. My daughter says she wants me to come live with her. When is the right time for me to give up my own home and what can I do so that I won't be a burden on my children? Suzanne Mintz responds: This is a common question. It is hard to give up your independence, but you are very lucky that your daughter is offering to have you live with her. The right time to make such a move is a very personal decision, but I think it is best to do it while you are still healthy and can grow some roots in your home and community. Don't wait for a crisis. Plan ahead. Think of this as a wonderful time for you and your daughter to develop a special kind of closeness. So as not to be a burden, maintain as much of your independence as you can. Talk with your daughter openly about how you are going to live comfortably together under the same roof. Make sure you both get some privacy. Respect each other's points of view and communicate, communicate, communicate. Good luck.   Barbara Jones of Wassaic, New York asks: I am trying desperately to find out why a parent can put a disabled child on their insurance no matter the age but an adult child cannot put a disabled parent on their insurance. Suzanne Mintz responds: I am not an insurance expert. I am a caregiver like you. But I think the answer is that parents are legally responsible for their children, but adult children are not legally responsible for their parents. You might want to contact the National Insurance Consumer Helpline (NICH) for a more comprehensive answer: 1 800 942 4242.   June Barber of Columbus, Ohio asks: Do you have any advice for siblings who disagree on how to take care of their parents? Suzanne Mintz responds: Funny you should ask this question. The lead article in the current issue of our newsletter, TAKE CARE! deals with just that question. First of all you are not alone in this dilemma. It comes up all of the time. Experts recommend holding a family meeting, early on in the caregiving situation if at all possible. But really any time is fine and they ought to be repeated on a regular basis to share thoughts, grievances, etc. It is often wise to have a 3rd party present, such as a geriatric care manager, a clergy person, etc. The question on the table is: What are we as a family going to be able to do? What role will each play? How will we pitch in? What are the rules of the game? Regarding disagreements a professional person serving as facilitator can help you come to consensus. Often those who are not fulfilling the role of primary caregiver don't have a clue as to what it is really like and it is easy to give advice. On the other hand distance can sometimes provide a fresh perspective. The trick of course is in how we communicate our thoughts and feelings. Set up guidelines so that you know what's coming.