A sudden turn for the worse
By Mike on Tuesday 15 April 2008, 23:29 - Journal - Permalink
Dad was admitted to Emergency at one of local hospitals on Thursday. He had
been falling over, had developed slurred incoherent speech, and was highly
disorientated.
OK, so here is the story of the day. I found Greg with dad in the hospital, just as Greg was leaving for a break. So I introduced myself to one of the doctors and stood talking to him, while looking at dad asleep in his bed. Dad looked shockingly frail and unwell. The doctor confirmed that there was no diagnosis yet. The pacemaker had recorded multiple fibrillations over the past two years, and the hospital equipment had detected several in the few days dad's been there. The carotid arteries had not been checked. Blood oxygen saturation had only been measured at the finger. The doctors were blaming the move into care and a possible reaction to the medication. That was that, for now.
Greg came back and we talked a bit. Dad woke up and kept trying to get out of bed, but wasn't really able. His speech is really poor. His hands lay in his lap and shook. He recognised us, though. Greg said that he was massively better than yesterday, and I asked how that could be. It didn't seem possible. We then talked about the sequence of events for a while (more on that later), then the doctor and his immediate superior came in. She was really quite unimpressive. When we started asking her questions she got very defensive and took a dislike to me. Greg very skillfully turned it around though. He told her that since she had been asking him what his thoughts on resuscitation were, he would now tell her. He would not decline resuscitation until we had got complete answers, and that was her responsibility. She swallowed and conceded that.
Then Rachel turned up. Then dinner turned up. Greg and Rachel proceeded to feed dad. I could see dad was getting confused with the two of them talking to him simultaneously, so I said nothing. But it came to a point where I asked Greg not to keep asking so many questions about whether dad would like this or that. Greg got annoyed and made a 'would you like to take over this job?' gesture. I said 'No. I am deliberately taking a back seat.'
Anyway, dinner over, dad wanted to sleep again. All he had really talked about was getting out of there. As we were leaving the boss doctor and HER boss turned up. The top dog was quite good, and listened, but they all seem to think dad has a recent history of psychosis. We strenuously tried to disabuse them of this misconception, and forced them to look for other possibilities. it seems the theories are now that dad's sudden decline could be multi-factorial, and the factors are:
The onset of the condition coincided with the Zyprexa, the relief of symptoms today coincided with the cessation of Zyprexa. Zyprexa is contra-indicated for the elderly, people with dementia, and people with heart conditions. It also causes increase in heart rate, which has also been noted in dad's case. Zyprexa is therefore strongly implicated.
Here's what the doctors thought had happened: Dad had been getting steadily worse since going into the retirement village and had become psychotic.
Here's why they think that: The staff at the home had said that there had been an 'incident' while dad was visiting mum, and that he had to be removed from her section. It was presented to the GP as something serious. We have been unable to get to the bottom of this and find out what this 'incident' really was. I think a major institutional over-reaction has taken place, the doctor has been stampeded into prescribing something way too powerful, and the side effects are just as expected for such a patient. However, we just don't know.
Zyprexa was started on Monday last week. Rachel saw dad on Wednesday and was surprised at how zombiefied he was. She saw him again later, after he had been given another dose, and noticed a further deterioration. It was in Thursday that he was taken into emergency.
The half-life of Zyprexa is 21-54 hours. Dad has been off it for over 24 hours now and the change is apparently significant. We are hoping that improvement continues. If it proves to be just the drug and no other factor I will be glad. Later in the evening we talked about what action to take. We concluded that unless there was a significant permanent loss of ability on dad's part we would be inclined not to go to court. We will review this.
Dad's room overlooks the surf at the beach and is pretty nice really. he is in no state to enjoy it. He will be a difficult patient, as he just wants to leave, and as he gets better he will make stronger efforts to get up and go. The response of the hospital will be to try to sedate him. We will keep an eye on this. Since Greg can walk to the hospital from his house he is planning on being there each morning and evening. This is good.
I sent a fax to the psychogeriatrician today too, outlining the recent sequence of events and asking her opinion. No answer yet - I expect a call tomorrow.
OK, so here is the story of the day. I found Greg with dad in the hospital, just as Greg was leaving for a break. So I introduced myself to one of the doctors and stood talking to him, while looking at dad asleep in his bed. Dad looked shockingly frail and unwell. The doctor confirmed that there was no diagnosis yet. The pacemaker had recorded multiple fibrillations over the past two years, and the hospital equipment had detected several in the few days dad's been there. The carotid arteries had not been checked. Blood oxygen saturation had only been measured at the finger. The doctors were blaming the move into care and a possible reaction to the medication. That was that, for now.
Greg came back and we talked a bit. Dad woke up and kept trying to get out of bed, but wasn't really able. His speech is really poor. His hands lay in his lap and shook. He recognised us, though. Greg said that he was massively better than yesterday, and I asked how that could be. It didn't seem possible. We then talked about the sequence of events for a while (more on that later), then the doctor and his immediate superior came in. She was really quite unimpressive. When we started asking her questions she got very defensive and took a dislike to me. Greg very skillfully turned it around though. He told her that since she had been asking him what his thoughts on resuscitation were, he would now tell her. He would not decline resuscitation until we had got complete answers, and that was her responsibility. She swallowed and conceded that.
Then Rachel turned up. Then dinner turned up. Greg and Rachel proceeded to feed dad. I could see dad was getting confused with the two of them talking to him simultaneously, so I said nothing. But it came to a point where I asked Greg not to keep asking so many questions about whether dad would like this or that. Greg got annoyed and made a 'would you like to take over this job?' gesture. I said 'No. I am deliberately taking a back seat.'
Anyway, dinner over, dad wanted to sleep again. All he had really talked about was getting out of there. As we were leaving the boss doctor and HER boss turned up. The top dog was quite good, and listened, but they all seem to think dad has a recent history of psychosis. We strenuously tried to disabuse them of this misconception, and forced them to look for other possibilities. it seems the theories are now that dad's sudden decline could be multi-factorial, and the factors are:
- the medication Zyprexa
- a chest infection they've detected
- poor blood supply and a possible small stroke or series of small strokes
- disorientation of relocation
The onset of the condition coincided with the Zyprexa, the relief of symptoms today coincided with the cessation of Zyprexa. Zyprexa is contra-indicated for the elderly, people with dementia, and people with heart conditions. It also causes increase in heart rate, which has also been noted in dad's case. Zyprexa is therefore strongly implicated.
Here's what the doctors thought had happened: Dad had been getting steadily worse since going into the retirement village and had become psychotic.
Here's why they think that: The staff at the home had said that there had been an 'incident' while dad was visiting mum, and that he had to be removed from her section. It was presented to the GP as something serious. We have been unable to get to the bottom of this and find out what this 'incident' really was. I think a major institutional over-reaction has taken place, the doctor has been stampeded into prescribing something way too powerful, and the side effects are just as expected for such a patient. However, we just don't know.
Zyprexa was started on Monday last week. Rachel saw dad on Wednesday and was surprised at how zombiefied he was. She saw him again later, after he had been given another dose, and noticed a further deterioration. It was in Thursday that he was taken into emergency.
The half-life of Zyprexa is 21-54 hours. Dad has been off it for over 24 hours now and the change is apparently significant. We are hoping that improvement continues. If it proves to be just the drug and no other factor I will be glad. Later in the evening we talked about what action to take. We concluded that unless there was a significant permanent loss of ability on dad's part we would be inclined not to go to court. We will review this.
Dad's room overlooks the surf at the beach and is pretty nice really. he is in no state to enjoy it. He will be a difficult patient, as he just wants to leave, and as he gets better he will make stronger efforts to get up and go. The response of the hospital will be to try to sedate him. We will keep an eye on this. Since Greg can walk to the hospital from his house he is planning on being there each morning and evening. This is good.
I sent a fax to the psychogeriatrician today too, outlining the recent sequence of events and asking her opinion. No answer yet - I expect a call tomorrow.
Comments
Mike,
Sorry to hear about this latest turn of events, though I can't say I'm surprised. This is so typical of what happens when parents are institutionalized. It happened to us a few times, actually. Thinking that there are "experts" who know how to handle Alzheimer's patients, we believe they, the professionals, can do a better job than we, the amateurs, can.
We pulled my father out of "professional Alzheimer's care" two times. The last time, it was because of the crippling, heavy duty anti-psychotic drugs they wanted to give him. While it is illegal in the US to physically restrain a patient there is no law against chemically restraining a patient. And you can attest to the truth of this disease, it takes an incredibly patient and dedicated caregiver to muster the kind of skills needed to deal with Alzheimer's. I've yet to find that talent on an institutional level. Sure you may find one or two great caregivers who work there, but there are dozens and dozens of caregivers who will have contact with your loved one and many, many of them really shouldn't even be allowed in the building.
Zyprexa, as an Alzheimer's solution, shows how desperate we all are to find SOMETHING that will make the disease manageable. Same with Risperadal, which my father took. If he took a dose large enough to make a difference, the difference would be that he'd sleep for days. If he took less, there was no effect. We took him off it.
We found that his dementia could be handled at home by talented, round the clock, caregivers. The environment was simplified, and the amount of stimulation was easier to control. My father was a big, strong, stubborn man but they used their voice and their body movements to guide him, they were gentle yet firm, they never, ever caused him harm or injury. And they weren't big, they were mostly small women who just knew the tricks of dealing with an Alzheimer's patient. Believe it or not, these people do exist. I can't tell you how much I learned by watching them. By contrast, when he was in an institution, his arms would be bruised from the wrist up to the elbow, from being grabbed and held by others. Institutions are understaffed and underpaid. They are the perfect storm when combined with patients who require one-on-one care and attention.
Everything declines. That's the really hard thing to accept. As bad as it is today, it will be worse tomorrow. And it can last a long, long time. I follow blogs of people dealing with this disease, because I want to see if the experiences have any commonality to my own. The good news is, everybody's different. The bad news is, it's all the same. We all travel the same road.
I hope you get to a point where you can find some stability, but my experience tells me, it's not to be found. It's a rocky, trippy road you're on. My heart goes out to you.
Patty
Well, I guess my previously voiced relief for you was extremely premature and way out of line.
I am astonished at what is happening to your dad. I am not, however, astonished at the medical establishment's reaction to your dad and your family as you attempt to negotiate this episode.
I'm thinking about you and your family but, since I have no idea what to hope for, I'm just, you know, thinking kindly about all of you.
Just want you to know...I'm still reading...not as often as before, but you remain on my mind.
As always, by the way, I am in awe of and heartily appreciate your extraordinary, meticulous honesty.
Presuming they ruled out a urinary tract infection as the source of your dad's confusion?