Dad's prognosis
By Mike on Monday 18 August 2008, 21:14 - Journal - Permalink
I went see dad, and mum, today.
As I arrived, dad was just being put to bed. He'd been up and sitting in the common room, had been able to support his own weight on a frame, and had been eating a bit more too. One of the staff told me that he had heard dad say several words clearly. Everyone agrees that dad has improved.
And now perhaps a pattern has emerged.
Each time dad has been to the hospital his condition has worsened substantially. Each time he has been discharged, he has suddenly started to recover. Even if I had not already lost all regard for the hospital, I would be wondering about this. I now think that the hospital is the worse place for dad, unless he has an emergency. From what I have seen and heard of their treatment, it is harsh, aggressive, and not adapted to dementia patients. The drugs are administered automatically. The cot sides are put on beds, despite the fact that dementia patients try to climb through them, get stuck and strip their skin trying to get out, or fall over while part of their body is sticking through the bars and break their bones. The casual meals, the scant bedding, the disregard of cries for help and inarticulate vocalisations all add up to a dangerous, alarming and inimical environement. The discharge papers showed that the hospital staff could not find any reason why dad was so dopy. They fixed the chest infection which was a consequence of his congestive cardiac failure, and noted that his frontal and temporal lobes are atrophied, but had nothing more to suggest.
Greg and I had a 90-minute meeting with the manager of the facility which looks after both mum and dad. We shared our view of the hospital and, surprisingly, it found sympathetic ears. We have now agreed with the manager that if dad's condition begins to fail, she should just make arrangements to make him as comfortable as possible where he is, rather than send him to hospital. The hospital cares nothing for comfort, it simply works in problem-solving mode. General systems decay, which is what dad appears to be suffering from, cannot be solved. It therefore lies outside the hospital's area. They have no interest in old-age care, and so dad is better off staying where he is. The manager is happy with this and feels that although he is almost certainly a nursing home case, there are no beds available right now, and so arrangements are being made to keep dad: a bed extension has been ordered (he's too tall for the bed when the back is raised), the staff are turning him over every two hours. He is receiving physiotherapy. I am actually very happy with what is being done here now.
Apparently, old people who enter this end-phase of general systems failure can remain in the state for several years, or simply die in their sleep within weeks. We therefore have no reliable estimate of how long dad has.
I sat in dad's room for quite a long time today, occasionally speaking to him, occasionally getting a groan or mumble in reply. To pass the time I began counting dad's breaths. He breathes quite heavily for 16 -17 breaths, then stops breathing for 26-31 seconds. This cycle just repeats over and over again. It is quite regular. He was eating very little, and what food he did eat seemed to be a labour for him. I am inclined to say that if he doesn't want food, we should just not push it on him. If he starts to die through the inevitable malnutrition, so be it. It was rather painful watching him grimace and moan as food was pushed into his mouth this evening. He spat a lot of it out.
I went to see mum. She was well dressed in a blue dress and beige cardigan, and was standing with some other women. She recognised me and we just walked around the facility together. She seemed to be in quite good spirits. Later, the staff brought out cheese and ham sandwiches and mugs off milky tea. Mum was very interested in this, so I sat her down at one of the tables and the staff gave her what she wanted. While whe focussed on her sandwich, I quietly slipped out. I'd spent nearly three hours there altogether today, the longest ever for me. It was a relatively reassuring visit.
As I arrived, dad was just being put to bed. He'd been up and sitting in the common room, had been able to support his own weight on a frame, and had been eating a bit more too. One of the staff told me that he had heard dad say several words clearly. Everyone agrees that dad has improved.
And now perhaps a pattern has emerged.
Each time dad has been to the hospital his condition has worsened substantially. Each time he has been discharged, he has suddenly started to recover. Even if I had not already lost all regard for the hospital, I would be wondering about this. I now think that the hospital is the worse place for dad, unless he has an emergency. From what I have seen and heard of their treatment, it is harsh, aggressive, and not adapted to dementia patients. The drugs are administered automatically. The cot sides are put on beds, despite the fact that dementia patients try to climb through them, get stuck and strip their skin trying to get out, or fall over while part of their body is sticking through the bars and break their bones. The casual meals, the scant bedding, the disregard of cries for help and inarticulate vocalisations all add up to a dangerous, alarming and inimical environement. The discharge papers showed that the hospital staff could not find any reason why dad was so dopy. They fixed the chest infection which was a consequence of his congestive cardiac failure, and noted that his frontal and temporal lobes are atrophied, but had nothing more to suggest.
Greg and I had a 90-minute meeting with the manager of the facility which looks after both mum and dad. We shared our view of the hospital and, surprisingly, it found sympathetic ears. We have now agreed with the manager that if dad's condition begins to fail, she should just make arrangements to make him as comfortable as possible where he is, rather than send him to hospital. The hospital cares nothing for comfort, it simply works in problem-solving mode. General systems decay, which is what dad appears to be suffering from, cannot be solved. It therefore lies outside the hospital's area. They have no interest in old-age care, and so dad is better off staying where he is. The manager is happy with this and feels that although he is almost certainly a nursing home case, there are no beds available right now, and so arrangements are being made to keep dad: a bed extension has been ordered (he's too tall for the bed when the back is raised), the staff are turning him over every two hours. He is receiving physiotherapy. I am actually very happy with what is being done here now.
Apparently, old people who enter this end-phase of general systems failure can remain in the state for several years, or simply die in their sleep within weeks. We therefore have no reliable estimate of how long dad has.
I sat in dad's room for quite a long time today, occasionally speaking to him, occasionally getting a groan or mumble in reply. To pass the time I began counting dad's breaths. He breathes quite heavily for 16 -17 breaths, then stops breathing for 26-31 seconds. This cycle just repeats over and over again. It is quite regular. He was eating very little, and what food he did eat seemed to be a labour for him. I am inclined to say that if he doesn't want food, we should just not push it on him. If he starts to die through the inevitable malnutrition, so be it. It was rather painful watching him grimace and moan as food was pushed into his mouth this evening. He spat a lot of it out.
I went to see mum. She was well dressed in a blue dress and beige cardigan, and was standing with some other women. She recognised me and we just walked around the facility together. She seemed to be in quite good spirits. Later, the staff brought out cheese and ham sandwiches and mugs off milky tea. Mum was very interested in this, so I sat her down at one of the tables and the staff gave her what she wanted. While whe focussed on her sandwich, I quietly slipped out. I'd spent nearly three hours there altogether today, the longest ever for me. It was a relatively reassuring visit.