My mug this morning…. Do any other caregivers out there feel like this? I’m on a journey without a map, with no end in sight. Who even signs up for a trip like that?? And this foray into the world of Alzheimer’s is just one of the things on my plate. I’m working two jobs to get two kids through college and trying to manage a household. I feel as though I’m back in that season of life, where I had to plan things around whether or not I could get a baby sitter. Only now the babysitter comes in the form of a home health aide. No more spontaneous running to the store or coffee with friends. Everything in my life is now scheduled around when I have help in the home for mom. I’m not complaining (ok, well maybe just a little) – I’m just tired.
Last night, mom got up at 2:30am to go to the bathroom. I sleep in a recliner in the tv room which is next to her bedroom. My bedroom is upstairs, and if I slept up there, I can’t hear when she gets up at night. As soon as I hear her get out of bed I try to jump up to see what’s going on, but last night she beat me to the bathroom. When I caught up with her, she was just standing in the middle of the bathroom peeing, not on the toilet. She remembered to pull the Depends down, but didn’t remember to sit on the toilet. So I got her back to bed, then sterilized the bathroom. At 3:20am I heard a loud thud and then screaming. She had fallen out of the bed and hit her hear on the closet door. She has rails on the bed, so I don’t even know how that happened. I tried for 15 minutes to get her up, but she was dead weight. And she is no help because she can’t follow even simple commands, like “move your leg over here”, or “roll over”. So I had to wake up Lian, and together we got her up and back into bed. I went to work tired today.
I know that placement in a Memory Care Facility is in her future. I don’t want that for her, and I feel bad even entertaining that thought. But there are limits to what I am realistically able to manage. I have always said that the threshold for me, the point when I would consider placement, was when she was in diapers. I just don’t think I can manage that part of her personal care. Well, we’re there. But I can’t do placement just yet. I don’t know if I see putting her in a facility as a failure on my part, or if I feel I would disappoint mom by doing so, or if I feel I would be letting God down. Probably a combination of all three. There’s also this delicate dance of personal expectations of myself vs. when her money runs out. Right now it’s cheaper to have her at home with aides while I’m at work. At some point she will need aides around the clock and on weekends. At that point, it’s a cost savings to have her placed somewhere. Sometimes care decisions have to be made based on finances, not altruism…. The good thing about placement is, I would be able to just be the daughter, and visit her and sit and be with her. I wouldn’t be responsible for getting pills into her, changing her Depends, etc.
Mom has been talking about dying for the last week. Mind you, she is healthy. Her doctor says she can live ten years – except for the Alzheimer’s, she is healthy. She will die with Alzheimer’s, not from it. None-the-less, she is preoccupied with death, actually she is scared of it. Almost daily she tells me she is dying. She got out of bed the other night and came to me crying, saying “I know I’m dying.” “Mom, the doctor says you are healthy – you’re not dying.” “I’m not?” Yesterday she asked me if she could just live one more month, she didn’t want to die this month. Gut wrenching for me.
As I’ve said before, we all get to do hard in this life – just different kinds of hard. I think if we each put our problems in a glass suitcase, and set that suitcase in the middle of the room, we would each take our own back.
I’m good, really. Just a little tired. But my respect level for the professionals and families who care for people with this awful disease has risen exponentially! Writing has been very cathartic for me in this season of life. In fact it’s 4:23am right now, and even though I’m tired, sleep eludes me. So I’m writing. I am not looking for sympathy, responses, or even a “You go girl!” I just believe that if I’m tired on this journey, that there must be others who are tired on theirs. With vulnerability comes community, and dare I say healing. There is so much hard going on in the world right now – maybe if we share our challenges, we double our joy.
Comentários