Getting a bit better
By Mike on Friday 18 April 2008, 14:37 - Journal - Permalink
I spoke to Greg this morning about a number of subjects:
Dad: he is walking without a frame, supporting his own weight, but still requiring help from two other people, holding him at the elbows. He is eating better, holding reasonable conversation, able to answer questions, his speech is improved. He is sitting up and less shaky.
Cognitive Assessment: While the doctors are saying that they think this is the best they can get him, and that it is time to do a cognitive assessment, Greg and the social worker (who appears to be on our side) think that dad's system needs to be cleared of medication first. He has been on four things: Risperidone, the antibiotic (for the chest infection, and unidentified), a sleeping tablet (unidentified), and a daytime sedative (unidentified). All these medications are being stopped. We will delay the cognitive assessment until early next week.
Roster: I will go over for Saturday night and Sunday morning and look after dad, to give Greg a bit of relief.
Long-term planning: We have informed the retirement village that we want to now place dad on permanent resident status. They had presented us with the following dilemma: make dad permanent, and thereby retain his place there, but pay extra money (basically backdated interest on the $250,000 bond which we cannot pay right now), or take him out, clear out his room and go to the bottom of the waiting list again. We could not simply leave dad in there as a respite resident, since there is no such thing as leave for respite residents. We came to our decision yesterday and informed the village. Now, here is where things become more complex. The fact is that dad is unlikely to improve enough to go back to his old room. He will probably need to go to a level of care much more like mum's. In fact, he is most likely to go into a place right next door to hers. This is only if he recovers his mobility. If not, he will need to go to a nursing home. The one in the village is full, though - or rather, all its standard places are full. So we have two other options to consider in case of reduced mobility. We pay extra for the special executive/business class/premium level of care in the on-site nursing home, or we go elsewhere, with a possible later return to the village when a standard place turns up. For now, I need to ask the village to keep a higher level care place open for dad until next week, probably, when he can take it.
All of our financial planning, finished just a couple of weeks ago, is probably now redundant. Although the parameters have not moved too much.
Other thoughts for the day...
We have asked the hospital doctors to check that the blood flow to dad's brain is not being restricted. They cannot be bothered. We will ask again, saying this time that either the check is done in hospital or outside, even if we have to get it done privately. It would be embarrassing for them if we had to do it ourselves and found that there was indeed a partial blockage. I hope this message gets through to them.
It only occurred to me today that yesterday was my mother's 86th birthday. I could have forgotten it completely if it were not for news from Rachel. Apparently they held a small party for her at the village. Rachel visited, but missed the party. We were not told about it, but then I guess the staff would have expected us to be there anyway. I had asked Rachel to make discreet and diplomatic inquiries at mum's place to see if she could find an eye witness to the 'incident' that occurred with dad there, and which triggered his whole sorry episode of medication and decline.
I've called Rachel to find out about the incident - left a message.
I've called the retirement village to request the higher-level care place for dad - left a message.
Dad: he is walking without a frame, supporting his own weight, but still requiring help from two other people, holding him at the elbows. He is eating better, holding reasonable conversation, able to answer questions, his speech is improved. He is sitting up and less shaky.
Cognitive Assessment: While the doctors are saying that they think this is the best they can get him, and that it is time to do a cognitive assessment, Greg and the social worker (who appears to be on our side) think that dad's system needs to be cleared of medication first. He has been on four things: Risperidone, the antibiotic (for the chest infection, and unidentified), a sleeping tablet (unidentified), and a daytime sedative (unidentified). All these medications are being stopped. We will delay the cognitive assessment until early next week.
Roster: I will go over for Saturday night and Sunday morning and look after dad, to give Greg a bit of relief.
Long-term planning: We have informed the retirement village that we want to now place dad on permanent resident status. They had presented us with the following dilemma: make dad permanent, and thereby retain his place there, but pay extra money (basically backdated interest on the $250,000 bond which we cannot pay right now), or take him out, clear out his room and go to the bottom of the waiting list again. We could not simply leave dad in there as a respite resident, since there is no such thing as leave for respite residents. We came to our decision yesterday and informed the village. Now, here is where things become more complex. The fact is that dad is unlikely to improve enough to go back to his old room. He will probably need to go to a level of care much more like mum's. In fact, he is most likely to go into a place right next door to hers. This is only if he recovers his mobility. If not, he will need to go to a nursing home. The one in the village is full, though - or rather, all its standard places are full. So we have two other options to consider in case of reduced mobility. We pay extra for the special executive/business class/premium level of care in the on-site nursing home, or we go elsewhere, with a possible later return to the village when a standard place turns up. For now, I need to ask the village to keep a higher level care place open for dad until next week, probably, when he can take it.
All of our financial planning, finished just a couple of weeks ago, is probably now redundant. Although the parameters have not moved too much.
Other thoughts for the day...
We have asked the hospital doctors to check that the blood flow to dad's brain is not being restricted. They cannot be bothered. We will ask again, saying this time that either the check is done in hospital or outside, even if we have to get it done privately. It would be embarrassing for them if we had to do it ourselves and found that there was indeed a partial blockage. I hope this message gets through to them.
It only occurred to me today that yesterday was my mother's 86th birthday. I could have forgotten it completely if it were not for news from Rachel. Apparently they held a small party for her at the village. Rachel visited, but missed the party. We were not told about it, but then I guess the staff would have expected us to be there anyway. I had asked Rachel to make discreet and diplomatic inquiries at mum's place to see if she could find an eye witness to the 'incident' that occurred with dad there, and which triggered his whole sorry episode of medication and decline.
I've called Rachel to find out about the incident - left a message.
I've called the retirement village to request the higher-level care place for dad - left a message.
Comments
Your parents are so lucky to have the three of you on the outside. One suggestion, though I don't know if it's at all possible, is to have private duty care at your father's facility. We did that with my father because there was no way he could adjust to such a new routine without someone paying close one-on-one attention to him. This is expensive, you have to pay the facility PLUS pay for a private duty caregiver to come in and basically do the care that the facility is supposed to do but can't because of having a million and one other Alzheimer's patients to look after with an understaffed, underpaid work force.
Nothing about it is fair or right. Nothing about it makes sense, so much money to do what? It's not like there are a dozens of medications to manage, or devicese to monitor. It's basically keeping someone safe and content, no threat to themselves or others. With Alzheimer's disease, that's a monumental task to accomplish, in and of itself. Our experience with my father taught us the only way to get the kind of care we found acceptable was to provide it, pay for it, and monitor it ourselves. And none of us had the time or financial capital to do it alone, but by banding together and working out schedules, we did a better job than would have been for us. It all sucked, though. It got more and more challenging as the decline became more and more evident. By the time my father died, all of our lives had been impacted tremendously - but not all for the bad like one might imagine. Out of necessity, I started my own company so I could have the freedom of flex time. It's still going strong today. I became politically active, for the first time in my life, because I saw the results of poor stewardship. And I became aware of the fact this disease really needs to have its ass whooped. The fact that it's underfunded is unacceptable to me, and so I try to get funding directly to leading Alzheimer's researchers. I figure that is the best I can do. After eleven years of the kind of stuff you describe so eloquently, I wouldn't have felt right just putting it aside and moving on. This is a huge, gigantic mess and your blog describes it in such stark terms, it's impossible to look away.
Thank you from the bottom of my heart for documenting your family's experience. As hard as it is to read, and as tough as it is to believe, you allow no wiggle room for excuses or explanation. This is how it is. And you are one family - there are five million families in this same boat.
Good luck with finding an eye witness. The way we did it was to talk to the helpers in the parking lot. They felt more confident speaking off premises than on.
I am officially very confused about the financial side of what your family is going through in order to provide care for your parents...even though, when I initially caught up, I tried to pay close attention to what you wrote about it, and, from what I remember, you wrote meticulously. I can only assume that I am confused because the financial aspect is so confusing; and, almost nonsensical, as well. Is that right?
Just wanted to let you know that I am still reading, and you and your family are in my thoughts.
Guess we were lucky that Dad was able to stay at home with Mum until quite late on in his illness (he had vascular dementia). And that Mum's decline, hospitalization and subsequent entrance to nursing home happened as fast as it did. The primary reason for her death was given as dementia, but we don't know if vascular or Altzheimer's - there didn't really seem a point to asking for a post mortem just to satisfy curiosity.
Hope that things get easier for your family!
Best wishes from Liverpool