Gail Answers Your Questions

SHEEHY: Q&A No. 1

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

Q: My husband was diagnosed with Stage 4 pancreatic cancer this past fall, and I am caring for him. I just heard your interview on 'Prime Time Radio,' and it was very helpful. I look forward to being able to read your journals and watch the videos to help me navigate through this. During the interview, I believe I heard you talk about a service that comprehensively researches illnesses for you. Could I get more information on this?

Debbie M.
Hallstead, Pa.

Gail: Henry Dreher is a cancer guide, a master researcher, and the author of "Mind-Body Unity" and "The Immune Power Personality: 7 Traits You Can Develop to Stay Healthy." Dr. Dreher consults with patients and caregivers in need of experienced help in researching a disease or treatments. Then he scours the database that doctors use—pubmed.com—which is the most comprehensive primary source for research in medicine.

You can use pubmed.com yourself. It's made available, free, and online, by the National Library of Medicine. But for those of us who are not trained academic researchers, searching the database is more than challenging. It's a brain-cruncher.

Dreher's job is not just to do conventional searches for answers and to send the caregiver a printout of all the references. He also suggests all the complementary, non-medical avenues that can be beneficial and that may alter the survival rate. He finds the natural herbs and supplements, nutritional support, exercise regimens, and psychological support that could be helpful in fighting the particular cancer or autoimmune disease. He charges for consulting and research. He winds up with a written summary of the options. I've found Dreher to be empathetic, thorough in his research, and, best of all, able to turn indigestible medical jargon into ideas that a layperson can swallow.

Q:  What service do you recommend to assist my 85-year-old mother-in-law? She fell outdoors over the weekend and was barely able to get up on her own. I'm afraid next time she may not be able to get up. She needs to be able to call for help at all times. She has a cell phone but always forgets to take it when she takes the dog out. SOS.

Peggy D.
Savannah, Mo.

Gail: Don't we all forget to take our cell phones when they're most needed! I once got lost walking in a state park without noticing when it got dark, and I had to borrow a dog walker's phone. But for the older people, the best is a medical-alert service.

Many smaller companies also offer medical-alert services. The owner simply pushes a button on a necklace or a watch. It signals a response center. Within 30 seconds, an associate pulls up a computer screen with everything he or she needs to know about the owner's medical condition and will phone local resources for whatever is needed.

Q: My 90-year-old mother has been living with me for the last 12 years. She is very healthy except for a swallowing problem (can only eat liquids or soft foods), dementia, psoriasis on ankle, and incontinence. She is deteriorating very fast mentally, and I'm wondering if I place her in a nursing home and all her money is exhausted, what happens if Medicaid won't pay for the nursing home? Do you have to have some sort of major medical problem to be Medicaid-eligible? I would place her in a nursing home in Kentucky, which is her home state. Thanks.

Emilie T.
North Charleston, S.C.

Gail: The key is to choose a nursing home that will accept Medicaid when her assets have been depleted. Most nursing home admissions offices will tell you their policies up-front. To help you choose the best home for her, visit the Center for Medicare and Medicaid Services Web site and compare the quality indicators they’ve gathered. When you narrow the choice to a select few, it’s wise to visit in person and take a checklist with you. You can print one from our page on nursing home options.

Q: Ms. Sheehy, I read "Passages" when I was much younger and passed it on; what a wonderful way you have with words. Now, I am 63 and caring for my 93-year-old mother. I retired early to care for her, so my Social Security is much less; hers is not much at all. I read that California gives Social Security checks to caregivers, in addition to the ones they personally receive. Is this true for all the states? We desperately need more income, due to Mom's health conditions and my diabetic situation. Thank you and God bless you.

Patricia M.
Hermitage, Tenn.

Gail: I shared your desperation!  We have to keep the pressure on Congress.  The Social Security Caregiver Act of 2007 (H.R.1161) would provide caregiver benefits by assigning wages to caregivers for each month that the individual provided at least 80 hours of care without any monetary compensation. Congress has not yet passed the bill.
 
Your mother’s income, and yours, may qualify you both for a number of financial programs. Go to Benefits QuickLINK to find the federal and state programs that could help you both save money.

Tennessee does participate in PACE, called the Program of All-Inclusive Care for the Elderly. Your mother would need to qualify for Medicaid, as well as Medicare, to participate in this program. The easiest way to find out whether or not she’s eligible is to contact your local Area Agency on Aging, which is in Nashville, Tenn., at 615-862-8828 or www.gnrc.org.

Q: This is more of a comment than a question for Gail. I've worked it the adult caregiving industry for 15 years, have been a family caregiver on two occasions, and currently serve as a state rep for the National Family Caregivers Association. In reading your info, I cannot tell you how happy I am to see that AARP chose you as an ambassador.

Typically, the stories and articles I hear about family caregiving are from some self-serving source and don't really deliver the true message: Caregiving is an overwhelming experience, so prepare yourself. So it was extremely refreshing to read your info, and I look forward to the updates. If I can ever be of assistance, you now have my contact information. Thank you very much.

Blake M.
Omaha, Neb.

Gail: Thanks, Blake. The National Family Caregivers Association does a great service in advocating for family caregivers. They can join free by going to their Web site.

Q: My mother is 73 and works full time in her home. She also takes care of my grandmother, 98, who is deaf and blind, and getting really bad now. She only receives Social Security, which basically covers her supplemental insurance and prescriptions. She gets absolutely no help from social services. I can't believe there is no help for her out there somewhere. They live in Maryland, and I'm in Florida. My mom doesn't want to send her to a home because she feels it will be a death sentence.

Heidi
Hollywood, Fla.

Gail: Start by calling your local Area Agency on Aging to find out what resources are in your area. You would call St. Mary's County Dept of Aging in Leonardtown, Md., at 301-727-5670. Your grandmother should qualify for the PACE program. If someone is eligible for nursing home care and entitled to Medicare funding for it, they can get payment for the PACE program as an alternative, which allows them to remain at home. PACE offers an interdisciplinary team in one location and transports the elder to get social services and all their medical care in the PACE center. The team creates a care plan with the participant and the family, integrating social and medical services, a medication-management plan, nutrition services, and possibly respite for the family.

You can also consider looking into other benefit programs that your mother is eligible for.  AARP's Benefits QuickLINK tool will guide you to specific municipal, state, and federal programs.

Q:  My mother, 88, lives in her home with one of my brothers and his wife. They both work. Another brother drives a school bus but is retired from his other job. After the bus route each morning this brother stays with mother during most of the day. She is often confused but is able to shower and dress herself and to function in this setting. She visits me monthly and does well physically. She knows people in this community now and remembers them. I am concerned that we do the most for her Alzheimer's as we can. When do we know that it is time for assisted living away from the home? Each of the siblings has different opinions of course.

Billie R.
Gulfport, Miss.

Gail: Fortunately, you have an Area Agency on Aging right in Gulfport. They can refer you to the local chapter of Alzheimer's Association and other resources. Your AAA is located at 9229 Highway 49. Toll-free number is 800-444-8014 or go to www.smpdd.com

Q: My brother who lives on Social Security had a severe stroke and requires an around-the-clock caregiver for his aphasia diagnosis. His speech is minimal and his cognition is compromised. What resources are available to help with the overwhelming cost of a caregiver?

Judie L.
Pearland, Texas

Gail: My first call would be to the Area Agency on Aging nearest where you live. The www.eldercare.gov Web site lets you search by zip code, and Pearland is apparently served by the Houston-Galveston AAA, which you can reach by calling 713-627-3200 or by visiting www.hgac.com.

One straightforward way to find out what your brother is eligible for is to go to AARP's tool called Benefits QuickLink. It will walk you through a number of local and federal programs that can help with expenses, saving money so that paying for a home health aide is less of a sacrifice.

Is your brother a veteran? If he is, there are services available for him through the Veterans Administration. Are there other members of his family who can help you put together a plan of care for him? If there is anyone, enlarge the caregiving circle around him and take care of yourself.

Q: I am interested in becoming a caregiver. What sort of training or certification programs are there? Do these have job placement?

William W.
Middletown, Calif.

Gail: The demand for home caregivers is enormous and growing. The quickest way to become a Certified Nursing Assistant, or can, is to take a course. The American Red Cross of Sonoma and Mendocino Counties apparently has a class for certified nurse-assistant training. With a search engine, I was also able to locate CAN training programs near you in Napa, Santa Rosa, Fairfield, and Angwin, Calif. Once you complete your training, your program is likely to help you find a job, and you should have no trouble finding one, even on your own.

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