• Lisa

the next step

Among science fiction fans, there’s a thing known as the con crud. Invariably when you go to a sci-fi convention, somebody there has some kind of bug, and it spreads, and a lot of people end up going home with it. Well, apparently, there is an RV show version. I’ve had it for the past 2 weeks. Sniffling, clearing throat, singing bass, and coughing like a barking seal has been my life.

Unfortunately, dementia does not recognize such things. Occasionally, mom would comment about a girl who worked here who was sick. On other occasions, when she was feeling particularly cranky, she would declare how glad she was that I was sick. A lot of the time, I could be hacking a lung up, and it didn’t seem to register at all. And on rare moments, she actually seemed to understand, and admonished me to be sure to take my cold medicine.

None of that was going on on the two days she had hours-long, full-bore cognitive meltdowns. I mean the storming around the house with purse over arm, laying down in the floor like a toddler and kicking and throwing shoes at the windows, kind of meltdowns. Seriously, I called the Alzheimer’s hotline, went through four counselors, and the best they could come up with that I hadn’t already done was call 911. Like that would have helped.

After the second one, I realized enough was enough. I probably would not have caught the crud, and it probably would not have lasted this long, if I were getting more than 4 or 5 hours of sleep a night consistently. Yes, I have friends who have cared for their loved one with dementia for 5, 7, 10 years. They are not me, and their loved one is not my mom.

I’ve had it. I started contacting assisted living communities. I’m going to tour one each week when the sitter is here, for the next few weeks, and try to find a place that can take good care of mom. I don’t need so much to be able to have fun again, though that would be nice, or to be able to work again, though Lord knows I need to earn some money, get insurance, and pay Social Security again. What I’m not getting right now is literally some of the basic elements of life. I’m not sleeping; she wakes me up every hour or two anymore, and even if it’s just a calm but confused going to the bathroom, it takes anywhere from 30 minutes to 2 hours. I’m eating, but it’s usually cold and/or has to be wolfed down. I don't mean to sound like I'm constantly complaining, but facts are facts.

She’s taken to hollering if I’m out of the room for more than a few seconds. Literally. Like, I can say ‘mom, I have to go upstairs and wash my face, I’ll be back down in a minute’. I make it to the top of the stairs and reach for a washcloth, and she starts this weird half-singing caterwauling, yelling my name over and over. I didn’t even get a break this week, because the poor sitter ended up in the hospital with the flu!

The whole ‘I want mom to be able to stay at home’ idea is great, when the mom knows who you are and that she is at home. Mom did know me this morning, briefly, when I got annoyed at having to leave my food to get cold again to take her to the bathroom. (yes, I know, I shouldn’t, but sleep deprivation leads to shorter tempers than usual.) I said I probably would just have to throw my breakfast away and she said “you’re just like your daddy”. Which is true, because he did notoriously do that once with a whole chicken in a pot, for some reason which I can’t now recall.

Most of the time, though, home and daughter are only in her mind; so if I kept her, it would be for me, not to benefit her, and it’s not benefiting me.

Every day now, she’s asking things like, Do you have a car, Where do you live, Would you drive me home this evening, or in the morning, I don’t think I have enough money for you to fly my body home to Nashville when something happens to me, and the like. I’ve just about stopped arguing with her on any of them. At the psychiatrist’s yesterday, she was alert enough to argue that she knew exactly who I was, I was Lisa. So I asked her, in front of him, Okay, so what? Who does that make me to you? She hemmed and hawed and said I was kin to her, and finally in a guessing tone asked if I were her sister-in-law.

So, the next phase begins.

I have to find a place we can afford that is good, clean, well staffed, knowledgeable, caring. People tell me, once she moves, I can stop being caregiver, and maybe be daughter again. I can see there could be a change in the dynamic: I’m no longer the one making her take her pills, or spending hours on end trying to explain them to her, or getting her to tell me what she wants to eat, or dragging myself out of bed to take her to the toilet. So, yeah, maybe it’ll work. I hope so. (is it bad that I've started a list of things I want to do once she has moved? lol)

It’s not going to be a simple step. I have to recruit all the help I can to pack up some of her things and come up with a whole wardrobe of cover stories, and break one out on the morning of the move. If she’s in a nasty frame of mind, it’ll be See, I told you I could find you another place to live, now you won’t ever have to deal with me again, just like you keep saying. If she thinks she is at work, it’ll just be Hey, there’s another place nearby where they need you, and you always say you don’t like working here.

What I fear is that on that day, she will be her. Then what will I say?

#family #dementia #caregiver

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