Battling Alzheimer

Okay, so let’s finish this conversation.

Like I said the other day, if you want to see anyone on the caregiving spectrum from a teenager to an adult child blush-talk about their loved one’s sex life.

I mean, I am grown, have children of my own and have literally written the book on teen sexuality (Straight Talk, How Teens Make Wise decisions About Love and Sex, Review and Herald, 2000). Yet, I just can’t imagine my mom and dad uh…..er…..um….. well, you know…having (whisper) sex. And furthermore, I really wouldn’t want to have to make decisions about their sex lives, especially when they were in their golden years and one of them had already died - because that would mean that one of my parents was having sex with someone other than my other parent.

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If you want to make a teenager or young adult blush, mention their parents having sex.

Let’s face it, there aren’t very many “children” be they teens, young adults, baby boomers or elderly who want to talk about their parents (aunts, uncles, grandparents) um….er……uh sex life.

Now, toss in dementia affecting one or both of the parties, and now you’ve really got something to talk about or not talk about.

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Yesterday, I talked about the connection between Alzheimer’s disease and diabetes. Today, I ran across a very interesting article and the conclusion seems to be that good nutrition and exercise for your mind and body are the best “prevention” for Alzheimer’s disease.

But here is my struggle. There are basically two types of people who read this blog. People who have Alzheimer’s disease or some other type of dementia and their caregivers.

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Have you ever wondered what it’s like to live with Alzheimer’s disease? I have. I used to look at my mother and wonder what she was thinking and how she was really doing.

Today, we have a glimpse into the life of someone who is living with dementia. I “met” Mary over at Alztalk.org, her story is below.

I was diagnosed 2 years ago with early onset Alzheimer’s. I’m 63. I was started immediately on Aricept, and two months later on Ebixa (called namenda in the States). Research is showing that starting both drugs early on is having better results.

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This post discusses unusual behaviors caused by Alzheimer’s disease and how to respond

My mom was up, dressed and ready to go to church.  On the surface, that seems like a good thing.  However, it was Tuesday morning!  But she was determined to go.  She had her purse in hand, coat over her arm and “no” was not an option.

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The terms dementia and Alzheimer’s are often used interchangeably.  In fact, dementia is not Alzheimer’s and Alzheimer’s is not dementia, although, they are certainly related.

For example, let’s say you your stomach is bothering you. You can’t eat much and it’s difficult to drink.  At first you shrug it off and hope you’ll lose a few pounds, but then you try to ignore it and finally attempt to soothe it with over the counter medicines, nothing works.  You call your Dr. and make an appointment. A couple of days later, you find yourself in the Dr’s office.  She asks you some questions, examines you and declares, “You have an acute pain in your stomach.”  You think to yourself, “Uh….duh……tell me something I don’t already know.”

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Battling Alzheimer’s Disease and its Compatriot Wandering

By nature, I am a pretty even tempered person. Not much gets under my skin. However, my mother’s wandering really got to me. She’d gather her coat and purse, and head for the door. By the time she had taken 10-15 steps, my normally 96/54 blood pressure had skyrocketed to stroke levels and I was s-t r-e-s-s-e-d.

No matter how much I talked, explained, used logic and my persuasion skills, she remained intent on going. Sometimes, she’d slip out of the door, without my knowing, and my toddler would announce to me that grandma was going, “bye, bye.”

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When you discover that something is missing from the place where you left it, what do you assume? Most people assume that somebody else moved it. That’s not my first response. My first response is to ask myself if I’m sure that’s where I really left it. I forget things. I know that. I’m not the only one who does it. Time management experts will smile knowingly. Enough people routinely find things by systematically looking in all the usual places that the time management experts can refer me to their handout on the subject.

But what if you discover that nothing is where you left? What if everything has been moved, including yourself? What if you don’t remember how you got where you are, but nobody will let you leave? That’s the common plight of people with Alzheimer’s disease.

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My grandmother mostly had delusions when she was sick - except for a persistent delusion that she had been left out of her parents’ inheritance. Usually we was a pleasant lady, with a good sense of humor. For her, dementia meant nothing like I used to think it meant. She was neither a crazed ax murderer, nor a odd duck on the lines of Doctor Demento. You could enjoy being with her, and most of her guests did.

Some of my grandmother’s delusions were related to poor eyesight, if not poor memory. She didn’t remember seeing some things, so she thought they had disappeared. Case in point: her little dog. The fluffy thing slept in bed with her, but the bed was big enough, and her eyesight was poor enough, that she constantly asked about it. If we couldn’t tell her quickly and accurately where it was, she had been known to grab her cane and head down the back steps by herself (remember, she was almost blind as well as wobbly) to look for it. I eventually made a sign for the respite caregivers, which said in big letters (which she still couldn’t read), “WHERE’S THE DOG?” She was happier when she always knew.

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After she was diagnosed with Alzheimer’s disease, my grandmother never became violent or extremely angry. She had lived with some angry people, apparently, and I think she decided she couldn’t win by out-raging them. She eventually found other ways of dealing with conflict. She was involved in some family violence, but nobody ever told me if she hit back.

Most of the things that made her angry would have made other people angry. Her daughter had been mistreated by a husband a few decades earlier: time to let that go, but certainly a reason for anger. Siblings had fought over the family inheritance: also time to let that go, though she had reason for resentment. Though she didn’t remember the inheritance negotiations accurately, it’s probably true that they could have been more fair to her. She remembered the feelings of unfairness but not the details. So she reacted to and reconstructed the events according to her memory and her feelings.

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