Wednesday, July 20, 2005
I notice it's 2300...
...and her light is still on. She's reading. As soon as it goes out I'll count down her 12 hours sleep from then. And I'll be going to bed immediately. I'm tired and cranky. It was hard for me to take her fumbling and her refusal to move today. She was good about "only" a two hour nap. She was in the bathroom when I headed in to awaken her.
I know I seemed to take easily her declaration, yesterday, that she didn't want to get out anymore or move much anymore, but I told her tonight that I can't accept that if it's going to mean that I have to negotiate more CHF episodes. I don't know. I forgot to mention: During one of those week or so silences in my journaling, back there, not too long ago, I tried dropping her off at the elder day care center in the town east of us (there doesn't seem to be one here, anymore) for a couple of hours. I'd talked to them, visited the place before hand, took her prepared with both walker and wheel chair. It seemed like a fairly lively place although there were a few Ancient Ones sitting around the edges of the day room snoozing in their wheelchairs. There were, though, other activities going on, including a sing-along to records and some crafts at some of the community tables. Mom went in (bless her pride) walkering. She hadn't wanted to go but I remembered that editorial in Caregiver.com regarding how good Adult Day Care could be for an Ancient One and insisted on taking her while I did some shopping. She's never been particularly social but she loves to people watch and I figured, well, maybe the overseers there, who seemed bright, competent and inviting, would help draw her out. When I returned to fetch her she was one of the Ancients around the fringes snoozing in her wheelchair. I asked one of the caregivers what happened. How, first of all, did she go from her walker to her wheelchair? "She said her back was hurting her." Okay. I'm familiar with that one. I asked how it was that she ended up on the fringes sleeping? "She drifted off at the craft table." I can understand that one, too. This spring when MPS and her daughter visited and we purposely made cards one evening at the table and became ridiculous in our attempts to encourage Mom to participate, she didn't do anything; and this was with family members with whom she's always thrilled to visit. As I recall, she even tried to go to bed early because, I think, she found the activity uninteresting. I didn't let her go to bed until we all retired. It wasn't a knock down drag out, I just said, "No, you can stay up and wait until we all go to bed. I'll make you some coffee (very weak instant decaf)."
I was thinking about it tonight in my frustration over today, and yesterday and the day before. Sometimes the suggestions that everyone would like to promote because they sound so damned good just aren't the right suggestions. Sometimes you have to listen to your Ancient One instead of those who consider themselves experts on Ancient Ones but aren't Ancient themselves.
As far as non-movement, though, I can't listen to her anymore about that. If pestering her to move a little will keep the CHF episodes a bit beyond arm's length (and, it's just a guess whether they will or not), then I'll try it again, until I again find myself in the place where I'm badgering her and making us both miserable.
It's not possible for all of us to be either caregivers or Ancients like the models. The models, in fact, are unrealistic, devised by a society that knows almost nothing about caregiving. Sometimes the answers aren't in slick pages in magazines or on the internet, even though these places insist they have the answers. Sometimes you have to turn your back on all that well meant "in my experience" advice and figure out what's going to work for you. It's not easy in a society that doesn't encourage us all to be caregivers from the moment we begin to take notice of others in our environment, nor is it easy in a society that ignores this circumstance as though it's a minor hitch and insists that turning caregiving into a commercial enterprise and following all the happy face rules is going to work.
All this happy face, use-the-commercial-resources advice didn't work for Sandra Day O'Connor and her husband. What in the world makes those in the caregiving industry think it's going to work for the rest of us?
Time to take my cranky self to bed.
I know I seemed to take easily her declaration, yesterday, that she didn't want to get out anymore or move much anymore, but I told her tonight that I can't accept that if it's going to mean that I have to negotiate more CHF episodes. I don't know. I forgot to mention: During one of those week or so silences in my journaling, back there, not too long ago, I tried dropping her off at the elder day care center in the town east of us (there doesn't seem to be one here, anymore) for a couple of hours. I'd talked to them, visited the place before hand, took her prepared with both walker and wheel chair. It seemed like a fairly lively place although there were a few Ancient Ones sitting around the edges of the day room snoozing in their wheelchairs. There were, though, other activities going on, including a sing-along to records and some crafts at some of the community tables. Mom went in (bless her pride) walkering. She hadn't wanted to go but I remembered that editorial in Caregiver.com regarding how good Adult Day Care could be for an Ancient One and insisted on taking her while I did some shopping. She's never been particularly social but she loves to people watch and I figured, well, maybe the overseers there, who seemed bright, competent and inviting, would help draw her out. When I returned to fetch her she was one of the Ancients around the fringes snoozing in her wheelchair. I asked one of the caregivers what happened. How, first of all, did she go from her walker to her wheelchair? "She said her back was hurting her." Okay. I'm familiar with that one. I asked how it was that she ended up on the fringes sleeping? "She drifted off at the craft table." I can understand that one, too. This spring when MPS and her daughter visited and we purposely made cards one evening at the table and became ridiculous in our attempts to encourage Mom to participate, she didn't do anything; and this was with family members with whom she's always thrilled to visit. As I recall, she even tried to go to bed early because, I think, she found the activity uninteresting. I didn't let her go to bed until we all retired. It wasn't a knock down drag out, I just said, "No, you can stay up and wait until we all go to bed. I'll make you some coffee (very weak instant decaf)."
I was thinking about it tonight in my frustration over today, and yesterday and the day before. Sometimes the suggestions that everyone would like to promote because they sound so damned good just aren't the right suggestions. Sometimes you have to listen to your Ancient One instead of those who consider themselves experts on Ancient Ones but aren't Ancient themselves.
As far as non-movement, though, I can't listen to her anymore about that. If pestering her to move a little will keep the CHF episodes a bit beyond arm's length (and, it's just a guess whether they will or not), then I'll try it again, until I again find myself in the place where I'm badgering her and making us both miserable.
It's not possible for all of us to be either caregivers or Ancients like the models. The models, in fact, are unrealistic, devised by a society that knows almost nothing about caregiving. Sometimes the answers aren't in slick pages in magazines or on the internet, even though these places insist they have the answers. Sometimes you have to turn your back on all that well meant "in my experience" advice and figure out what's going to work for you. It's not easy in a society that doesn't encourage us all to be caregivers from the moment we begin to take notice of others in our environment, nor is it easy in a society that ignores this circumstance as though it's a minor hitch and insists that turning caregiving into a commercial enterprise and following all the happy face rules is going to work.
All this happy face, use-the-commercial-resources advice didn't work for Sandra Day O'Connor and her husband. What in the world makes those in the caregiving industry think it's going to work for the rest of us?
Time to take my cranky self to bed.
