Do we redirect? Do we distract? Do we join them in their world? Those are questions we caregivers constantly wrestle with. Which is best for this person? Which is best for this time of day? Which is best for where they, mentally, are now?
While I’ve had several elderly friends with Alzheimer’s disease, and I continue to learn more about that disease, the direct caregiving experiences I had were with other types of dementia. Each dementia was as distinct as the person who had it. And each day brought new caregiving challenges. I’ll share with you, through this series of four blogs, the different dementias I witnessed first hand, as the primary caregiver.
My Mother: Organic Brain Disease, or “Senile Dementia”
The first, because it’s likely the most "common" if you will, was my mother’s dementia. Her dementia was the type people would call, when I was growing up, "senile dementia." It was the sort that was expected when people got old. The official, modern diagnosis for my mother was organic brain disease.
Mom’s memory had gradually gotten worse. It was a slow, but obvious, slide. This was combined with increasingly poor decision making and an increase in controlling behavior. (If this rings a bell, raise your hand.) She broke my heart when she once said, tearfully, "There are so many holes in my mind."
Even while I was still buying Mom her crossword puzzle books, and she could still come close to completing the one in her daily paper, she had gotten so she didn’t remember if my sister had visited the day before. This is the kind of thing where I often used distraction. I hated how awful she felt when I had to tell her that Beth had come on Sunday, as usual. Mom had just forgotten. I couldn’t lie and say my sister hadn’t been there. So I had to tell the truth, and then try to distract Mom, the best that I could, from the pain she felt about forgetting.
I did Mom’s shopping, and she often didn’t remember what she had told me to buy, which is why I often "got it wrong." I would again try distraction, but she’d usually grab onto this like a bulldog. It was a way for her to relieve frustration, I suppose. Distraction was a poor match for her, when she was determined. And redirection? That too, failed me here.
She would sometimes decide to wield her power over her checkbook by calling a sales person and buying something - usually something expensive. If her friend got something new, and told her about it, she decided that she needed it too - even though she was in a nursing home, with limited room. Her friend was not. Mom was fortunate enough to have a private room, but still, there is a limit to what you can cram into it. For this, I’d bang my head against the wall.
I tried to take home clothing she wasn’t using, so she had room for what she wanted. But that caused problems, too. She once told an aide that I was taking her sweatshirts home to wear to work - when actually, I was taking her winter things home to make room for her new, spring, birthday gifts. I told her this, and she said I should make room - take home the winter clothes. But (this is where I start to sputter) she still told the aide…
Okay, I’ve recovered. But, let it be known, please, that I do not wear elastic banded, polyester pants and decorated sweatshirts to my job at a newspaper. Pretty as they were on her (and practical), this is not considered professional dress in my office. Besides, they didn’t fit me.
When Mom’s friend needed hearing-aids and she told Mom about them, Mom called the local hearing-aid people for a check-up. (She had her own phone, which is a whole 'nother blog.)
Mom had very minimal hearing loss, and didn’t need them, but she bought $4000 hearing-aids. The best they had to offer. I swallowed hard. That would pay for a month in her private room, give or take a few hundred. But it was her money. And she was in a mood to prove it.
I explained that she had one month to try them and return them if she didn’t like them. She fiddled with them, off and on for a couple of weeks, then left them in the box. I started doing a count-down. Finally, I said, "You have one week to return them. You don’t like them. You don’t wear them. Don’t you want your money back?"
This was the wrong approach, as she considered it a challenge, but I didn’t know what else to do. None of the recommended approaches seemed appropriate here, so I tried logic. Not good.
She said she did, too, like them, and, to prove it, had me get new batteries and put them in. She fiddled with them each day, with me counting down the time. The last day, I said, "This is it. They have to go back today, or you own them." She said she liked them and would keep them. That was the last day she had them in her ears. They sat in her drawer until the day she died.
Mom’s short-term memory loss; her desperate attempts to be in charge as she lost her mental capabilities; her wanting to buy new things as a form of entertainment and control - these are all quite common with her type of dementia. The recommended approaches helped, on occasion. But I was often flying solo.
My dad also had organic brain disease as a diagnosis, but, as you will see in my next blog, his situation was extremely different.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.