Apr 24, 2011

Alzheimer's Questions with No Good Answers

Caregivers: Where are you on the continuum ranging from selfless saint (who never becomes resentful) and deadbeat? Where is the line between living our life and sacrificing our life for them? How much care giving is enough?...
By Carol Blackwell
Alzheimer's Reading Room

I often wonder where we fall.

My husband Bob comes from Atlanta and is an only child. We moved to Virginia in 1975. We first noticed a problem with his mother in 1990. She was supposed to meet our daughter at an airport to attend a wedding and didn’t arrive at the meeting point on time. Finally she showed up with a kind stranger who had found her confused and wandering from gate to gate.

We had no idea what was wrong with her, but this was our first indication she may have something wrong (the word Alzheimer’s wasn’t used much). Bob’s father died in 1997. He had taken care of her and taken on the burden of cooking, etc. So, in 1997, we had our first decision point. What do we do now? Move back to Atlanta? Force her to move to D.C.?

It was tricky. Our friends and family were in D.C. Bob had a government job which he enjoyed very much and he would lose his retirement annuity if we moved to Atlanta. I stayed home for several years while the children were young and had only recently returned to the workforce. I loved my job and didn’t want to give it up.

On the other hand, my mother-in-law had only lived in Atlanta and she absolutely refused to consider moving to VA. She wanted to stay in her home and continue to attend her church and be able to visit her friends and a sister. Should we have insisted she move here?

Initially we hired a service so she would have people in her house 24 hours a day as she couldn’t drive, had forgotten to clean, etc. That situation lasted less than a week as we received a phone call from the service at 3 AM one morning. Evidently Bob’s mother awakened in the night to find the third shift caregiver in the living room. She decided the caregiver was a stranger, intent on robbing her.

Bob’s mother chased her around the house with a broom, managed to call a taxi and took off in the cab to parts unknown. We were in Virginia and had no idea what to do. Bob called a family friend in Atlanta who, luckily, managed to locate her and get her back home.

We realized that she couldn’t stay in her own home, so we moved her into an assisted living where the manager was the daughter of a friend. That situation lasted only a few months as Bob’s mother called Bob every day and told him she needed to be back in Sandy Springs, the suburb of Atlanta she had lived in for the majority of her life.

We had no idea what the best answer was, and, due to her insistence on staying in Atlanta, Bob found an assisted living place in Sandy Springs. He moved her in and she was content. We tried to visit her when we could, but we lived in Virginia and only managed long week-ends every month or so.

We felt guilty—surely she deserved people around more often—but we were stumped as to what to do.

She was so insistent on living in Sandy Springs, but she had dementia. Should we force her to come to us? Were we selfish to want to stay where our lives were? We had lots of questions and we weren’t happy with any of the answers. We did bring her to Virginia for Christmas, but she was always agitated, etc. If I had known then what I know now about Alzheimer’s, I might have done things differently. I just don’t know what or how!

After 5 years of back and forth to Atlanta, we brought her to Virginia. Bob’s mother no longer went to church, her only remaining sister died, and she didn’t know where she was.

We put her in the dementia unit of an assisted living nearby with a bright, sunny room where all the residents stayed during the day. She had a nice room of her own upstairs truthfully, it never occurred to us to bring her into our home. I don’t know why. We just didn’t.

She seemed content in the assisted living and we visited several times a week. After 2 years her money ran out and she moved into a nursing home that took Medicaid. That’s a lot of moving!

By that time we really couldn’t have taken her into our home anyway as she was in a wheelchair, couldn’t walk or talk and we weren’t physically able to move her. She has been there for 5 years now.

We went often to visit her in the beginning but now only go twice a week to feed her and see that she is OK.

She knows who Bob is, I think, but no one else. She will be 97 in 5 weeks and, since she eats very well, will probably live to be 100. She has lived with Alzheimer’s for 20 years.

I often wonder what we should have done differently. What would have happened if we insisted she come here and moved her into our home? What if I had given up my career to help care for her? What if Bob had given up his career? Would we have been resentful? I expect we would.

How would I have reacted to Bob’s diagnosis of Alzheimer’s 4 years ago if I had been care giving for his mother for the last 16? I don’t know, and I don’t like to think about it. I am probably a better caregiver for him because I didn’t have to care every day for her. But, of course, I still feel guilty. I am sure there was more I could have done.

How much do we owe our loved ones, especially with AD? Do we owe them the rest of our lives? Our parents gave us life, but do we owe them ours? What do you want your children to do if you are diagnosed with AD? What is the line between saint, which we clearly weren’t, to deadbeat?

I love the Bible verse from Micah because it seems to give guidance to life.
“He has showed you, O man, what is good. And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God.”

I love the verse, but I am not sure how it applies to living with Alzheimer’s. What is just? How much mercy you have to love? What is the best thing to do?

I don’t know, do you?

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

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Original content Carol Blackwell, the Alzheimer's Reading Room