Caregiving 101
Sep. 25th, 2011 11:38 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
pjthompsonSo, I've finally reached a place where I'm not running and doing every waking moment, though things are still hectic and next week promises to be a challenge. My mother was lucky in some ways: her personality is intact, her sense of humor is still there (though it went absent for awhile), her reason is sound, she has no paralysis or speech impairments. She does have quite an impairment in her left visual field, and her short term memory is quite wonky. She's been having trouble keeping track of time. Part of that is the visual impairment. I've bought and set up clocks with great big digital displays in critical areas of the house to help her keep on track. She still gets lost in the rooms of our house, though not as much as when she first came home. Her balance wasn't great before, but now it's a little shakier. But she is improving every day, her doctors expect her to improve some more. It's still an uphill climb.
My choices for her care are rather stark. I have to go back to work or we'll lose the house and everything else. Medicare will only pay for 24 hour rehab/nursing home care and we can't afford to hire in-home care. $15 an hour is the cheapest I found. Long Term Disability Insurance, folks: consider it. It may seem like a ridiculous expense when you're young and healthy, but in times like these, it's a godsend. Given the twists and turns of life there's no guarantee you'll use it, what with getting run over by buses and just dropping dead one day of natural causes, but.
Mom and I had a long talk with one of her doctors Friday—who is also her friend and looking out for her—and we'll be putting her on hemodialysis as of Monday. I've been doing all her in-home dialysis since the stroke because she just hasn't been up to the challenge. Hemodialysis (blood exchange vs. fluid exchange) is where we take her to a center three times a week (Mon-Weds-Sat) and have them do the treatment for 3 hours or so then bring her home. That will take some of the pressure off me as far as dialysis is concerned, or maybe just switch it around to a new type of pressure. Hard to say at this point. Her doctor also thinks she's high enough function that she can stay at home alone while I go to work. This isn't ideal, will worry me a lot, but as I said, limited options. If she was going to go into acute rehab (24 hr care) she should have been admitted directly from the hospital. In order to get her into a rehab place at this point, the doctor would have to readmit her to the hospital on some pretext and manipulate the system. He was willing to do that if he thought it necessary but after our long session together, he doesn't think it is. And none of us are thinking of warehousing her at a nursing home at this point.
Here's another thing to consider, folks: if you do have to put a loved one in a 24 hour care facility, Medicare will probably pay for the first 60 days 100%. After that, they will go after the Social Security and pension money of the beneficiary (Mom). They might go after her property, too. Consider getting a living trust or other legal advice to prevent that from happening if you want to leave the property to your heirs.
If things go well on Monday, I might go into work on and off this week. I've been on half-pay leave of absence and even that will run out very soon. The following week I would hope to return semi-full time. I say semi because Mondays and Wednesdays I'm going to have to come and go taking her to dialysis, come back to work, then picking her up. They're still trying to work out the schedule so I'm not sure how many hours that will be. There are also going to be rehab appointments that I don't know how I'm going to get her to. And yet, people you don't even expect sometimes step up with sincere offers of help. One of my friends who doesn't work days may help me out with some of this. I helped her through a dark time, she said, and she wants to give back to me. I never expected a payback. I did it because it was the right thing to do.
Doing the right thing, folks: consider it.
Mom's doctor is hoping this is temporary and that with therapy she can be retrained on her old in-home dialysis method. I'm doubtful, but we'll see. Mom's still willing to fight. We'll reassess this situation in 3-4 weeks. At that point, if it looks like she's going to be on hemo long-term, I'll have to reassess my going and coming, too.
I've greatly appreciated all your expressions of support and concern, but I may not be able to respond to anyone. There isn't a heck of a lot of time left after the caregiving and mostly what I want to do with that is sit down and fall asleep. Blessings to everyone. Keep us in your prayers if you're prone to that sort of thing.
My choices for her care are rather stark. I have to go back to work or we'll lose the house and everything else. Medicare will only pay for 24 hour rehab/nursing home care and we can't afford to hire in-home care. $15 an hour is the cheapest I found. Long Term Disability Insurance, folks: consider it. It may seem like a ridiculous expense when you're young and healthy, but in times like these, it's a godsend. Given the twists and turns of life there's no guarantee you'll use it, what with getting run over by buses and just dropping dead one day of natural causes, but.
Mom and I had a long talk with one of her doctors Friday—who is also her friend and looking out for her—and we'll be putting her on hemodialysis as of Monday. I've been doing all her in-home dialysis since the stroke because she just hasn't been up to the challenge. Hemodialysis (blood exchange vs. fluid exchange) is where we take her to a center three times a week (Mon-Weds-Sat) and have them do the treatment for 3 hours or so then bring her home. That will take some of the pressure off me as far as dialysis is concerned, or maybe just switch it around to a new type of pressure. Hard to say at this point. Her doctor also thinks she's high enough function that she can stay at home alone while I go to work. This isn't ideal, will worry me a lot, but as I said, limited options. If she was going to go into acute rehab (24 hr care) she should have been admitted directly from the hospital. In order to get her into a rehab place at this point, the doctor would have to readmit her to the hospital on some pretext and manipulate the system. He was willing to do that if he thought it necessary but after our long session together, he doesn't think it is. And none of us are thinking of warehousing her at a nursing home at this point.
Here's another thing to consider, folks: if you do have to put a loved one in a 24 hour care facility, Medicare will probably pay for the first 60 days 100%. After that, they will go after the Social Security and pension money of the beneficiary (Mom). They might go after her property, too. Consider getting a living trust or other legal advice to prevent that from happening if you want to leave the property to your heirs.
If things go well on Monday, I might go into work on and off this week. I've been on half-pay leave of absence and even that will run out very soon. The following week I would hope to return semi-full time. I say semi because Mondays and Wednesdays I'm going to have to come and go taking her to dialysis, come back to work, then picking her up. They're still trying to work out the schedule so I'm not sure how many hours that will be. There are also going to be rehab appointments that I don't know how I'm going to get her to. And yet, people you don't even expect sometimes step up with sincere offers of help. One of my friends who doesn't work days may help me out with some of this. I helped her through a dark time, she said, and she wants to give back to me. I never expected a payback. I did it because it was the right thing to do.
Doing the right thing, folks: consider it.
Mom's doctor is hoping this is temporary and that with therapy she can be retrained on her old in-home dialysis method. I'm doubtful, but we'll see. Mom's still willing to fight. We'll reassess this situation in 3-4 weeks. At that point, if it looks like she's going to be on hemo long-term, I'll have to reassess my going and coming, too.
I've greatly appreciated all your expressions of support and concern, but I may not be able to respond to anyone. There isn't a heck of a lot of time left after the caregiving and mostly what I want to do with that is sit down and fall asleep. Blessings to everyone. Keep us in your prayers if you're prone to that sort of thing.
no subject
Date: 2011-09-25 07:01 pm (UTC)I'm very prone; consider yourself and your mom there. *hugs*
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Date: 2011-09-29 09:31 pm (UTC)no subject
Date: 2011-09-25 07:31 pm (UTC)no subject
Date: 2011-09-29 09:31 pm (UTC)no subject
Date: 2011-09-26 01:33 pm (UTC)no subject
Date: 2011-09-29 09:30 pm (UTC)no subject
Date: 2011-09-27 03:04 pm (UTC)no subject
Date: 2011-09-29 09:30 pm (UTC)no subject
Date: 2011-09-29 02:26 pm (UTC)Message me or email me if you need to vent. *hugs*
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Date: 2011-09-29 09:30 pm (UTC)no subject
Date: 2011-10-01 04:35 pm (UTC)