Gail Answers Your Questions

SHEEHY: Q&A No. 2

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

Q: I am not "new" to caregiving. I came to Bradenton, Fla., to stay with my mom while she had surgery on Dec. 2, 1999. I have been caring for her 24/7 by myself since that day. I have a story to tell, and when Mom passes, I have made a solemn pledge to fight to get some help for caregivers. I am unable to work outside the home because of my mother's needs, and it's a problem for many of us. Many of us have had to go into debt, have lost our health insurance, lost friends and any social life. The isolation is difficult, and our health suffers, both mentally and physically.

I am writing because I am aware you are gathering material for a book regarding this topic (God Bless You), and if you would like any of my input or story, please feel free to contact me. Thank you, Gail. You give me hope. 

Ellie Merson
Bradenton, Fla.

Gail: Eleanor, my heart breaks on hearing your story, because it is all too familiar. You want to do the right thing, you start by addressing an emergency, and gradually you become enveloped in the needs of a loved one until you have given up any life of your own, your health, and your financial security. You've been doing this for 10 years. Look at my Web pages at AARP.org and look at the videos to see how others have pulled out of the isolation.

You need to go on a caregiver retreat. You may learn from other caregivers where they have found help and broken the codependence that so often develops. My online journals also have resources, like the Pace program. Some disease organizations will lead you to grants for respite care—time away for your own repair while someone else looks after your mother. The West Central Florida Area Agency on Aging (phone: 813-740-3888) might know of a day care center where you could drop off your mom. Good luck! Let me know if any of this helps.

Q:  My 89-year-old mother refuses to quit smoking. She has been evicted from one assisted-living facility for smoking in her room. Back in her condo, I am caring for her twice a day. She also refuses a caregiver for even a few hours a day. Is it even possible for her to give up cigs when her next move comes? I consider my time with her at 70-90 hours monthly, and I feel bad to keep track.

Tom M.
Redlands, Calif.

Gail: Get in touch with the County of San Bernardino Area Agency on Aging to find out about local resources—you must insist that she accept another caregiver for some of the time. You can't do it alone. You could tell Mom you'll bring her chocolates when you visit, but she can only have them if there are no cigarettes.

Q: I left my job and moved back home to care for my mom when dad passed away three years ago. Mom is now almost 87, and I can only work a job with flexible hours, which have been reduced to about five hours a week. My Individual Blue Cross/Blue Shield plan has a $10,000 deductible and costs $428 a month.

I live off Mom's Social Security and my small savings, which I am going through quickly due to the insurance premiums that have depleted my "retirement money," as it costs over $5,000 a year. Since the deductible is so high, I must also pay out of pocket for medical supplies. Are there any agencies out there to help, since we do have a small savings that Dad left Mom?

Joann H.
Hammond, Ind.

Gail: There are a number of programs that can help you and your mother. Start by seeing which ones you or she are eligible for at the Benefits QuickLink tool. Pursuing these programs takes time, but there are forms right on the Web site, and the help you receive will give you a better picture of the choices you both have. Good luck!

Patricia S.
Hewlett, N.Y.

Gail: Sadly, New York State does not reimburse family caregivers for doing this important work. It is something we will all have to fight for. To use your skills as a registered nurse and provide income that might allow you to be your brother's part-time caregiver, you could sign up with an agency and do part-time work as a paid professional caregiver.

Q: I have been married for 48 years, and my husband is 81. He has Alzheimer's. My question is this: Reference is always made about caring for "loved ones." But what if the person you care for, you don't really like? My marriage fell apart many years ago, and I had to come to grips with the situation. I had my period of "mourning" in order to survive. Why is this never addressed?

Lupe C.
Mill Valley, Calif.

Gail: You are not alone. Many people care for unloved ones or for a family member who never loved enough. This is also a hidden face of domestic abuse. I'm talking about the family caregiver who is trying her best to meet all the needs of a parent or husband or wife who is chronically ill, but who is being beaten up for it, emotionally or even physically. Two books that offer good suggestions on how to handle a combative elderly person who is driving you crazy are "Elder Rage – or Take My Father, Please: How to Survive Caring for Aging Parents" by Jacqueline Marcell and "Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children" by Grace Lebow and Barbara Kane. (Both apply to spouses)

An excerpt from "Elder Rage," for example: "If it is early in the dementia, you can still set limits of acceptable behavior. Correct them every time inappropriate behavior occurs and when foul or embarrassing language is used."

"If you are being verbally abused ("I hate you … I never want to see you again.") … Stay calm … don't escalate it to a screaming match. Don't expect a rational discussion. Say that you know they don't mean to be this way, give three calm warnings, use the silent treatment, walk away if the behavior does not stop."

Get in touch with the Marin County Area Agency on Aging to find the Senior Centers and Adult Day Care center nearby. It may take a lot of coaxing and compassion to get your parent to step out of their comfort zone of being at home and to consent to go to day care where they don't know anyone. Take your parent out for lunch and then casually stop by 'The Center' to say hello to that social worker. Perhaps the staff can offer a 'job' saying that their help is needed with the bingo, cooking or singing classes.

Q: My 92-year-old mother lives in assisted living after moving near me. She is a/oX4, quite intelligent after having been married to a career military man. She presents well and is very cordial and friendly with everyone she meets. Her new pulmonologist told me he would never have thought she was 92, more like 75, and with no dementia.
 
If she is all of the above, why does she constantly call me and leave hateful, accusatory voice messages on my phone (never directed at anyone else but me)? How do I learn to cope (right now, my best coping mechanism is to delete her messages before I listen to them and to stay away from her). How do I enlist the understanding and support of my sister (who was the point of her phone calls years ago), who lives out of state?

Judy M.
Branson, Mo.

Gail: She is probably desperately lonely and maybe depressed, and you may be her only outlet to vent her frustration. You need to protect yourself and "retrain" Mom. Continue to delete her messages until you can talk to her in person. Tell Mom you will call her, on your terms, and remain on the phone only as long as she is civil and you can have a pleasant conversation. If she changes her tune and is kind to you, you will call more often. Set boundaries and stick to them. Let her know if she can be considerate with you, you might try to coax your sister to try to re-establish contact. And if she doesn't change her habits and you continue to delete her messages, make sure you answer the calls from the assited-living residence, in case of an emergency.

 * * *

The section below is for comments only. If you want to ask Gail a question, please fill out this form. Gail will not answer questions posted below.