Gail Answers Your Questions

SHEEHY: Q&A No. 3

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

Q: I have always been an admirer of you and your wonderful books. I have been struggling with my parents, who are getting older and have more health issues that will worsen as time goes on. I have an older sister, 10 years older than me. I am 51years old and find that she is downplaying their health and medical problems. That really frustrates me and angers me, since she does not seem to understand the potential dangers and possibility of surgery, needing more assistance down the road, and possibly needing to sell their home. It scares me that I am the only child who is there for them and that my sister may not be able to help out when crunch time comes.

I am hoping for some advice that will better prepare me to deal with my reluctant sibling. Thank you,

—Julie S.
Wyckoff, N.J.

Gail: You are so right, Julie, to anticipate the potential dangers and need for future assistance. If ever there was a good time for a family meeting, this is it. But you want to head off a sibling fight based on old scripts. You will do much better if you first get thorough health assessments on both your parents.

You have many great resources in your state. Consider calling local caregiving networks, such as Caregivers of New Jersey, The Family Resource Network, in Trenton, at 609-392-4900. Ask where you can get your parents assessed, and hook up with a social worker who can set up the family meeting and be the neutral voice. Your older sister will be more likely to listen to a professional.

You can also watch the Colbert family videos on my AARP Web pages to see how they did it.

If family members just aren't interested in helping, move on before the next crisis occurs. There are great resources on AARP's Caregivers Resource Center Web site.

Enlist friends and neighbors to help out. Two excellent guides to help you organize an ongoing group to care for your parents if one becomes seriously ill are the following: Share the Care and Lotsa Helping Hands.  

Q:  I am a 23-year-old single mother of one, and I also take care of my 81-year-old grandmother. She has had cancer, and since her surgery in June 2008, she has become increasingly "needy" and very self-centered. I find myself becoming very frustrated having to take care of her and my son at the same time, while trying to complete my college education. Do you have any advice for me on how I keep from getting so frustrated and stressed out all the time?

—Jennifer S.
Salem, Ore.

Gail: Jennifer, while traveling around the country interviewing family caregivers, I met a 28-year-old woman who had to assume caregiving duties for her dad while working full time and juggling her own life. Lindsey's story, along with a video, is up on my AARP Web pages now. Watch for her; you may be able to relate.

The AARP Web site offers a lot of information for family caregivers. A great place to start is www.aarp.org/caregivers.

I also suggest visiting National Family Caregivers and the Family Caregiver Alliance for information and resources. In your area, contact the NorthWest Senior & Disability Services (or toll-free by phone, 800-469-8772), and ask them to point you in the direction of a nearby Area Agency on Aging. Ask for resources in your area that are available for you and your grandmother. This might help free up your time a little bit.

Lastly, since I am sure you're feeling "stressed out" by this additional responsibility, please try to take care of yourself as well! Choose one small thing you can do each day to soothe yourself. Hang in there. You're doing a wonderful job.

Q: Hi Gail, haven't read your caregiving stories yet...have to gear up for it. I took care of my beloved mom from 1991 to 2005, Christmas Day, when she passed away in my arms. We went through her failing health, ultimate total renal failure, and my cancer and follow-on illnesses during that time. I needed to quit my work in 2002 to take care of both of us full time. We went through many stages, many spiritual events, losses, closeness, many lifetimes in a decade and a half. I am so glad people are writing about caregiving. No one really GETS it, who hasn't been there.

—Katie-Lynne G.
Oro Valley, Ariz.

Gail: Dear Katie, you are right. Unless you've been through it, it doesn't seem to register. And while you're doing it yourself, you’re too busy to raise anybody else's awareness. The good news is, it's being talked about more and more. I'm so glad to be part of the discussion and to share the stories I've collected on my Web pages and in my book. When you have regained your strength, I hope you will join us along the way. Thank you for your response. 

—Pamela L.
(Loving daughter and wife)
Fresno, Calif.

Gail: Dear Pamela, Your description is so accurate: the "fuzzy in-between phase." It's wonderful that you are able to take time to be with your parents, help stabilize the situation, and look at options for the future. Do you have any siblings or other family members? This would be a good time to have a family meeting and discuss what each person has to offer. Perhaps it would help you to meet with a mediator or counselor to discuss the very big decisions that are looming and will have to be addressed. Don't do all this alone. There are resources out there.

The Family Caregiver Alliance in San Francisco is a wonderful resource. In their FAQ pages, they have an answer that deals directly with long-distance caregiving, handling cognitive illnesses, and much more. If you call them, they will be able to lead you to other resources as well. Also visit Share the Care or Lotsa Helping Hands to learn how you can organize a group to care for loved ones who are seriously ill.

Q: The wife is caring for an Alzheimer’s patient She needs a person that is knowledgeable enough in health issues to meet this patient at all his doctor's appointments and who can relate to the doctors all the pertinent information and relate back to the wife the proper care.

—Ana A.
Bluffton, S.C.

Gail: Dear Ana, I think the first step is to contact your local Area Agency on Aging for Beaufort County, S.C.: Point South, Yemassee, S.C. 29945; phone, 843-726-5536. Ask them for the nearest Alzheimer's Association in your area. You can also visit the Family Caregiver Alliance and look under Frequently Asked Questions (FAQs).

A care manager can arrange and monitor hands-on services to help your relative. Care managers or social workers may be available through your relative's local department on aging. Another option is to hire privately a care manager or other professional, such as a Certified Nurse Assistant (CNA), to help coordinate services and respond quickly to challenging situations.

Remember to obtain emotional support for yourself. Discussing your situation, letting your feelings out, and listening to other points of view can provide some relief and help you to refuel.

Visit the Web site of the National Association of Professional Geriatric Care Managers, which can help you find someone with expertise in directing the care of seniors and who can do a thorough assessment of your family's situation. Care managers are typically paid out-of-pocket, and their fees vary, although some long-term-care insurance policies cover their services. Listen to an AARP Radio interview about finding a geriatric care manager.

Q: My caregiving situation is a little different. My 15-year-old daughter is profoundly brain damaged from birth. This has left her completely dependent. She is nonverbal and non-ambulatory. I will care for her in my home until the day I die. What I've been seeking and cannot find is weekend help with her care. There are simply no people who want to do this job. It's not a question of funding, as I have some money put aside for this. And it's not a question of getting approval or on the right list. There is a lack of people available to do this work.

I have been through all the home-care agencies in the area. I have advertised in the paper and online. I have paid to contact workers on both nanny and senior-care Web sites. I check postings on Craigslist.org and supermarket bulletin boards. I'm just out of ideas and out of hope. I would welcome your input should you have any.

Thank you.

—Audrey W.
Medford, N.J

Gail: Dear Audrey, You are doing the wonderful work of angels. Are you able to connect with others in your area who have also devoted their lives to caring for a loved one with disabilities? I share your desire to keep chronically ill and disabled family members at home whenever possible. Here are a few organizations (you may already be familiar with) that provide resources and advocacy for those with disabilities. Perhaps they can steer you in the right direction in your search. Take care of yourself, and don't give up hope.

Family Caregiver Alliance has great resources on its Web pages. Look under "Frequently Asked Questions" to find a response to:  How can I find someone to help care for my family member at home?

The American Association of People with Disabilities (AAPD) will provide you referrals to organizations that can help. AAPD is located in Washington, D.C., and can be reached at 202-457-0046 (V/TTY) or toll-free, at 800-840-8844 (V/TTY).

Independent Living Centers has a site that provides a list arranged by state or you can also go to disabilityinfo.gov
 
TASH (formerly the Association for the Severely Handicapped) is also in Washington, D.C., and can be reached via e-mail at Operations@TASH.org.

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