It seems that I constantly have a book in my hand these days. I'm pretty sure I've read every book on Alzheimer's and Caregiving that our library has, as well as a few that I bought elsewhere. The problem is, every Alzheimer's case is different in how it affects the individual, every individual has a different personality to begin with, and every family has different dynamics. In other words, I keep reading and searching for answers, but there isn't one sure-fire solution.
To be honest, just when I started to lose hope that we'd ever get the car keys taken away from Steve's Mom before she had an accident, God stepped in and provided a way. We were easily able to remove his Mom's car, without any anger or drama. Now, 2 months later, she never even talks about needing a new car or needing to go anywhere. We make sure she has all the groceries and items she needs, get her to the hairdresser and doctor appointments, check on her daily, and all is well.
But now we have to figure out how to get her to willingly move into an assisted living facility, or whether to step in and take legal actions to force her to move. Honestly, we've already been told that if we don't move her, and if we tried to have home services set up, it was likely that a case file would be opened and the government would step in and make her move. Knowing that, we could invite the Area Agency on Aging out to visit with her about needing to move, and let them open that case file. But, we'd still like to avoid that, just as we'd like to not have to legally force this step.
But how in the world do you tell a woman who has no concept of her own disability (anymore) that she's not able to live on her own. From her perspective, all is well. She no longer realizes she forgets things. She no longer tracks time to realize it's been weeks since she showered. She doesn't realize that losing weight is a health issue. She can't tell us what she ate that day, though she's always sure she ate something. She can't even track how often she's in pain or not feeling well. She can only tell you how she feels at that moment.
I don't want anything bad to happen to her. I don't want her to fall and break a leg or anything. But I do want God to change her heart and her perspective. Somehow. We've already had one hard discussion with her not understanding our concerns and accusing us of being nosy, over-reacting, and interfering. (Not that she could think of all those words, but that was the gist of her feelings.)
One of the books I'm reading this week really touches home -- revealing some issues to me, assuring me of our decisions, and maybe offering some insight as to how to proceed. Maybe. I'm reading The 36-Hour Day, the old classic. I need to see if the library has a more recent version than the one I picked up used.
Chapter 3 talked about the loss of sense of time. We knew Mom had no sense of time. She'd tell you she did something 20 minutes ago, then a few sentences later say it was 4 hours ago, and we knew she was randomly stating times without any real understanding of how long ago it really was. She usually can't even tell us how long ago her husband died, or how long her mom had Alzheimer's Disease, or how long it's been since she saw one of her other children. We knew that. But I hadn't realized that the reason we often couldn't get her to stay for a nice visit was due to this lack of sense of time.
Then we read in chapter 3 about others who would leave after barely arriving at their child's home, or would leave as soon as the meal was finished. Steve's Mom kept doing this and we had no idea why she wouldn't stay longer. She didn't seem mad, or overly confused, but she just wouldn't stay for a nice visit. Now I see it's because she doesn't know how long she's been there, and thinks it's been longer than it has been.
Mom is also always wanting to move. After she was widowed, she kept saying she either wanted to move here near us (where she lived early in her marriage and her husband is buried) or back to where she grew up. We were thankful when she stopped changing her mind and moved here near us, where we could help take care of her. Except she hadn't been here three months before she started saying she thought she wanted to move to where she grew up, after all. Now she says she wants to move where her sister is, or to where she grew up. Obviously, we know she isn't capable of making logical decisions, but we also didn't understand her constant desire to move.
Then I read in chapter 7 that constantly wanting to "go home" is really a symptom of their growing confusion. Things stop being familiar, even a home they've lived in for years, and they long to go back to what is familiar. Except, even if you take them to their childhood home, it's no longer familiar. It's a continual searching for feelings of safety, comfort, familiarity that they can't really reclaim. So maybe she isn't wanting to move because we made her go to the doctor after years of avoidance. Maybe she isn't wanting to move because she loves others more than us. Maybe it really is just a symptom of her confusion.
When I read chapter 4, about when a person should stop driving or living alone, I felt total confirmation and peace about the fact that Steve's Mom should not be living alone and that it was the right decision to remove her car, as well. So many of the descriptions of someone who is too confused/impaired to live alone fit Steve's Mom. The Alzheimer's Association told Steve we handled the car issue very well. But how do we navigate the issue of assisted living equally well? They said the therapeutic fib of the car breaking down was a good move on our part ... yet they advise talking to her about moving into assisted living. Talking about her need, which she can't see, only makes her angry. So what therapeutic fib can we use to help get her moved? We haven't yet figured that one out.
But we have to do something very soon. Please, God, move in this situation. Help us to understand her thought processes (confused as they are) so we can do what is best for her, without just trampling over her feelings.
One word of advice I do have ... TALK!! If anyone in your family has Alzheimer's Disease, talk about it in the early stages. Don't sweep it under the rug. Don't worry that talking about it will embarrass them. Talk about it. Make plans. WRITE them down and have the impaired person sign them. Because later they will deny ever having said they wanted that. Make a game plan. (Although changed circumstances may mean needing to tweak the plan later.)
Our family didn't. We let Mom keep her secret, pretending we didn't all know, not expecting that Steve's Dad would die 3 years later, leaving her a widow with Alzheimer's Disease. By that time, her decisions were already impaired, but we still should have talked. We still should have made plans, but no one wanted to upset her anymore than necessary since she was grieving, prone to holding grudges, and very stubborn. It was the wrong choice.
Still trying to find the right path,