We bought a small motorhome in 2006 when I retired from full-time work. Since then we've used it extensively and travelled as far as Hungary and Italy. When S had her sudden decline in the autumn I thought we would never go away in the van again.
Last week, with S's full agreement and approval, we went on a short motorhome trip to Snowdonia. S seemed to slip seamlessly into motorhome mode again and in fact the two nights were better than the last few times we used the van last year. We met up with family which helped but also spent several hours confined in the van by a series of showers. We successfully chilled out to our own music and the radio. When we got back home we both thought it had been a big success.
This week, we went to the dentist for check-ups which I thought would be very difficult. It wasn't at all. S got into the right position on the chair, opened her mouth wide enough for inspection and a scale and polish. The dentist is superb, which is a great help, but S was just amazing, actually much better than the last inspection over a year ago.
I keep reminding S how well these things went and she certainly understands that these are significant achievements, even though when we saw a speech and language specialist this week (more on this later) she was unable to say the names of her two daughters.
As I suggested in the previous post, there's the person and then there's their cognitive abilities.
Friday 27 April 2012
Tuesday 17 April 2012
A person is more than their cognitive ability
It's obvious really, but this extract from a Gransnet Q & A with Professor Alistair Burns, the government's 'dementia tsar', explains with great force and clarity why a person-centred approach is vital when dealing with dementia (and the same could probably be said of all mental health conditions).
A criticism of the focus on dementia is that it puts too much emphasis on what is lost (memory) and not enough on what endures.
This plays into ageism by creating the idea that life is a process of inevitable decline.
The obsession with cognitive ability - which is actually prevalent throughout life, from the classroom onwards - leads us to a very narrow view of human nature and how to age well.
Do you agree that stereotypes of dementia are creating the idea that cognitive ability inevitably falls away in middle age? And that this obsession makes it very difficult to respect the selfhood of older people?
How do we treat the disease while avoiding this negativity?
Dear bridgeofsighs,
You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.
You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.
In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.
You raise a very important point in terms of re-ordering the way in which we regard and treat people with dementia. While we do know that cognitive ability (predominantly memory) does decline with age, there is the assumption, which as you say is completely false, that dementia is part of normal ageing. This brings up the profound therapeutic nihilism to which you are referring and, as you say, can lead to a narrow view of human nature.
You raise the key point of selfhood of older people. In dementia we call that personhood and the preservation of personhood enshrined in person-centred care is a key aspect of improving the treatment of people with dementia.
In terms of your last question, about treating the disease while avoiding this negative view, our awareness campaigns - while directed at alerting people to the early signs and symptoms of dementia - will help in this regard. The honesty and openness of people like Sir Terry Pratchett in declaring his Alzheimer’s and how he is living well with dementia is also an important part of rebuffing this negativity.
Sunday 15 April 2012
Postscript
The passage quoted in the previous post continues with a description of the mother's distress and confusion - she is left to cry herself to sleep.
The daughter concludes:
It could be that she needs a change in mood medications.
Or (this my suggestion) a thorough review of all her medication and possible interactions and side-effects, with a view to discovering whether the complex cocktail is responsible for, rather than ameliorating, her 'mood'.
The daughter concludes:
It could be that she needs a change in mood medications.
Or (this my suggestion) a thorough review of all her medication and possible interactions and side-effects, with a view to discovering whether the complex cocktail is responsible for, rather than ameliorating, her 'mood'.
Friday 13 April 2012
No comment required...
Mom hasn't been feeling good the
last couple days,
(This is taken from David Shenk's book 'The Forgetting')
I wonder if her medication has
something to do with it.
She takes:
Propulsid 20 milligrams, twice a
day
K-Dur 20meq SA TAB, once a day
Synthroid 0.025 milligrams, once
a day
Imdur 30 milligrams, once a day
Procardia XL 60 milligrams, once
a day
Prilosec 20 milligrams, once a
day
Aspirin 325 milligrams, once a
day
Betagan eye drops, two drops for
each eye, twice a day
Trinsicon/Ferocon, once a day
Paxil30 milligrams, once a day
Neurontin 100 milligrams, once a
day
Nizoral (cream), once a day
DitropanlOxybutynin chloride
5milligrams, twice a day
Extra-Strength Tylenol; once a
day
(This is taken from David Shenk's book 'The Forgetting')
Friday 6 April 2012
Possible explanations for S's improvement
So how were the improvements achieved?
1) I realise now that S was probably just as shocked and distressed as I was when she had the awful and sudden decline. She didn't want to be the apparently helpless person that she seemed to be, so she made, and has continued to make, real efforts to respond to my suggestions, requests, and thoughts about what might help.
2) S got her appetite back, but we don't really know why. I had a lot of help from the dietician to whom we were referred. She advised forgetting everything I'd ever learnt about a healthy, balanced diet and to give S loads of calorie rich stuff - cream, butter, honey etc. It was hard and I had to keep reminding myself when looking at nutrition information that I wanted the calorie count to be as high as possible. Gradually she started to eat more. Breakfast and lunch were thick sandwiches, I tried to establish a sit-up evening meal - with some success - and presented all kinds of between meals snacks. My brother and sister-in-law invited us over once a week for a proper meal and the fact that S usually ate 'properly' there, with minimal help, was greatly encouraging. Gradually things began to improve and success bred success, old habits were re-established and I was eventually able to start reducing the cream, butter and calorie-rich snacks. She has now reached what is probably her ideal weight and our diet is gradually returning to normal.
I'd actually lost quite a lot of weight with the stress of the decline. It was quite pleasant to have a period of eating whatever I liked,, when I liked. Now I've got back to where I think I should be so neither of us really needs anything other than a normal healthy diet. We are maybe a little deficient on vegetables as S, despite being a non meat-eater, is not very keen on most vegetables. But we eat a lot of fruit and S drinks apple juice almost exclusively.
3) I've mentioned the benefits of walking previously. I'm still very impressed by the ease with which S manages to walk at a reasonable pace considering how she was back in the autumn. She talks non-stop and the 'conversation' is often more agitated than when she is at home but when she gets home after a walk there is usually a lengthy period of calm.
4) We're attempting to suppress the herpes virus with aciclovir (an anti-viral medication and the only medication she has taken for several months. There are several posts on the possible link between Alzheimer's and herpes so if you haven't read them already, just put 'herpes' into the search box at the top left. I was interested to learn that the manufacturers recommend a dosage for suppression of the virus and that this can be used for months or years. I originally thought it might be difficult to get a continuous supply form the GP, but he was very helpful. I feel that S has become more aware of other people since we started this treatment but it is hard to prove.
5) We were introduced to a wonderful woman whose working life has been spent in care homes. She's now retired and hadn't worked for a few years but for whatever reason decided to work as a carer for people with dementia. We employ her for between 3 and 6 hours a week. It's very good for me, having time for myself to do things I need and/or want to do. Sometimes I stay at home and keep out of the way. I've also met friends for lunch, been for bike rides, and gone shopping in a relatively relaxed way, amongst other things. This wouldn't be nearly so easy if I didn't have someone who so clearly had an immediate rapport with S and who clearly had the skills and personality to deal with any foreseeable difficulties. From what I can see, S is very relaxed in her company and is always calm and happy when I take over again. So we are both benefiting.
6) Finally, for now, there are the groups and activities that we now attend. The Young Onset Centre proved a real let-down but eventually the admiral nurse and the occupational therapist between them pointed us in the direction of singing, social and music therapy groups. These are all quite challenging for S - she is usually the most challenged participant by far - but, because she is essentially a very sociable person, she certainly appreciates that side of the activities. And other people are generally able to see past the unusual behaviour and appreciate her real personality. She has never shown the slightest reluctance to go to these groups, despite the fact that our schedule is somewhat more hectic now.
P.S. One of the most important factors has been the help and support of S's daughters. One of them is 3 or 4 hours away and now has two young children but she is as supportive as possible. The other one, who lives locally, sees S several times a week and has a wonderfully relaxed attitude to what must at times be quite distressing behaviour from S. It's made an enormous difference to me to have someone who now knows more about S's problems and strengths than anyone else apart from me. I don't know what I would have done if she hadn't risen to the challenge so magnificently. I can talk to her about S from our shared experience and we have learned from each other. Other family members, from both sides, have done all that they can, as have many friends.
1) I realise now that S was probably just as shocked and distressed as I was when she had the awful and sudden decline. She didn't want to be the apparently helpless person that she seemed to be, so she made, and has continued to make, real efforts to respond to my suggestions, requests, and thoughts about what might help.
2) S got her appetite back, but we don't really know why. I had a lot of help from the dietician to whom we were referred. She advised forgetting everything I'd ever learnt about a healthy, balanced diet and to give S loads of calorie rich stuff - cream, butter, honey etc. It was hard and I had to keep reminding myself when looking at nutrition information that I wanted the calorie count to be as high as possible. Gradually she started to eat more. Breakfast and lunch were thick sandwiches, I tried to establish a sit-up evening meal - with some success - and presented all kinds of between meals snacks. My brother and sister-in-law invited us over once a week for a proper meal and the fact that S usually ate 'properly' there, with minimal help, was greatly encouraging. Gradually things began to improve and success bred success, old habits were re-established and I was eventually able to start reducing the cream, butter and calorie-rich snacks. She has now reached what is probably her ideal weight and our diet is gradually returning to normal.
I'd actually lost quite a lot of weight with the stress of the decline. It was quite pleasant to have a period of eating whatever I liked,, when I liked. Now I've got back to where I think I should be so neither of us really needs anything other than a normal healthy diet. We are maybe a little deficient on vegetables as S, despite being a non meat-eater, is not very keen on most vegetables. But we eat a lot of fruit and S drinks apple juice almost exclusively.
3) I've mentioned the benefits of walking previously. I'm still very impressed by the ease with which S manages to walk at a reasonable pace considering how she was back in the autumn. She talks non-stop and the 'conversation' is often more agitated than when she is at home but when she gets home after a walk there is usually a lengthy period of calm.
4) We're attempting to suppress the herpes virus with aciclovir (an anti-viral medication and the only medication she has taken for several months. There are several posts on the possible link between Alzheimer's and herpes so if you haven't read them already, just put 'herpes' into the search box at the top left. I was interested to learn that the manufacturers recommend a dosage for suppression of the virus and that this can be used for months or years. I originally thought it might be difficult to get a continuous supply form the GP, but he was very helpful. I feel that S has become more aware of other people since we started this treatment but it is hard to prove.
5) We were introduced to a wonderful woman whose working life has been spent in care homes. She's now retired and hadn't worked for a few years but for whatever reason decided to work as a carer for people with dementia. We employ her for between 3 and 6 hours a week. It's very good for me, having time for myself to do things I need and/or want to do. Sometimes I stay at home and keep out of the way. I've also met friends for lunch, been for bike rides, and gone shopping in a relatively relaxed way, amongst other things. This wouldn't be nearly so easy if I didn't have someone who so clearly had an immediate rapport with S and who clearly had the skills and personality to deal with any foreseeable difficulties. From what I can see, S is very relaxed in her company and is always calm and happy when I take over again. So we are both benefiting.
6) Finally, for now, there are the groups and activities that we now attend. The Young Onset Centre proved a real let-down but eventually the admiral nurse and the occupational therapist between them pointed us in the direction of singing, social and music therapy groups. These are all quite challenging for S - she is usually the most challenged participant by far - but, because she is essentially a very sociable person, she certainly appreciates that side of the activities. And other people are generally able to see past the unusual behaviour and appreciate her real personality. She has never shown the slightest reluctance to go to these groups, despite the fact that our schedule is somewhat more hectic now.
P.S. One of the most important factors has been the help and support of S's daughters. One of them is 3 or 4 hours away and now has two young children but she is as supportive as possible. The other one, who lives locally, sees S several times a week and has a wonderfully relaxed attitude to what must at times be quite distressing behaviour from S. It's made an enormous difference to me to have someone who now knows more about S's problems and strengths than anyone else apart from me. I don't know what I would have done if she hadn't risen to the challenge so magnificently. I can talk to her about S from our shared experience and we have learned from each other. Other family members, from both sides, have done all that they can, as have many friends.
Thursday 5 April 2012
The fatalism of the experts
There is no such thing as remission in Alzheimer's, or so we are told. I saw a web Q & A with David Shenk, author of 'The Forgetting', a fascinating 'history' of the disease, and he said this in so many words. And you can find several other eminent professionals on the web saying the same thing.
Yet reading Shenk's own book I came across Morris Friedell. Shenk was obviously impressed with his abilities, in 1999, and it appears from his web presence that he is still going strong - and is in touch with other people who also seem to be holding the disease at bay. This is inspiring.
What increasingly depresses me about the experts (and actually Shenk is essentially a journalist so may have some excuse) is their fatalism about the disease. I think it must arise from the fact that this is so predominantly a disease of old age. Maybe there's an unspoken assumption that as they're soon going to die anyway, it doesn't really make a lot of difference that there's no remission, no cure - and precious little effective treatment. Whatever the reason, it would be good to see more attention paid to people like Friedell and what the experts who haven't experienced the disease themselves might learn from some brave spirits who have. We rightly admire and laud people who 'struggle' with terminal cancer, but people with dementia are seldom if ever talked about in the same way, even though many of them may really be doing themselves a great deal of good by refusing to accept that their fate is sealed.
Yet reading Shenk's own book I came across Morris Friedell. Shenk was obviously impressed with his abilities, in 1999, and it appears from his web presence that he is still going strong - and is in touch with other people who also seem to be holding the disease at bay. This is inspiring.
What increasingly depresses me about the experts (and actually Shenk is essentially a journalist so may have some excuse) is their fatalism about the disease. I think it must arise from the fact that this is so predominantly a disease of old age. Maybe there's an unspoken assumption that as they're soon going to die anyway, it doesn't really make a lot of difference that there's no remission, no cure - and precious little effective treatment. Whatever the reason, it would be good to see more attention paid to people like Friedell and what the experts who haven't experienced the disease themselves might learn from some brave spirits who have. We rightly admire and laud people who 'struggle' with terminal cancer, but people with dementia are seldom if ever talked about in the same way, even though many of them may really be doing themselves a great deal of good by refusing to accept that their fate is sealed.
A request from TV documentary producers
I thought there might be people reading this blog who would be interested in this information:
A request from TV documentary producers:
We're very keen to hear from people who would be prepared to speak to us, on an off-record basis, about their experiences of dementia care homes. We're particularly interested to hear from people who are currently seeking suitable residential care, and from those who have experience of anti-psychotics. Feedback from those working within the care profession is also most welcome.
We're very keen to hear from people who would be prepared to speak to us, on an off-record basis, about their experiences of dementia care homes. We're particularly interested to hear from people who are currently seeking suitable residential care, and from those who have experience of anti-psychotics. Feedback from those working within the care profession is also most welcome.
Please contact Libby@hardcashproductions.com if you'd like to know more.
How S has improved
I thought I'd summarise all the improvements in S's condition since her dramatic decline in the autumn, and list the things that could have helped to produce the improvement. There's absolutely no doubt that there has been a dramatic improvement - everyone who sees her now, including 'professionals', comments on the visible, and obvious, signs. She still has some days when things aren't as good as usual - she can still have sudden outbursts of aggression or sobbing, caused by frustration, but are very much briefer than they were during the worst times.
In no particular order of significance:
1) It's now possible to get S's more or less immediate attention when I need to. Even when she's very agitated and distracted, if I wait a minute or so and try again, we're usually successful.
2) Food and drink are hardly an issue now. When S lost so much weight - she was well below 8 stone and it was still falling - my attempts to get her to eat and drink dominated our days and caused great stress to us both. Now she has regained most of the weight she lost and has a good appetite. I no longer have to worry at all about nutrition.
3) At the depth of the autumn decline it was incredibly hard to get S into the bath. She hated it and seemed to have no idea how to get in or out. Two of us had to more or less lift her in and out - with little or no co-operation from her. Now I help her bathe almost every day. She steps in and out, just holding my hand and/or the wash basin for support. I think she gets to her feet from a sitting position more easily than I do! And I'm a pretty fit 67 year old!
4) Previously when I handed her her glasses she would often grab my hand rather than the glasses. She rarely does now. Similarly, when she got into bed it was very hard to get her head on the pillow - she would end up too high or too low in the bed and I would have to physically move her up or down, something she often resisted. Now she either gets it right first time or responds to instructions to move up or down without protest.
5) During the bad spell, she frequently referred to herself in the third person. I found this quite disturbing. She doesn't do this now.
6) S will now sit calm and still for longish periods, even when nothing much is happening.
7) She used to be incredibly sensitive to touch and would complain 'that hurts' almost whenever you touched her. She is still more sensitive than she used to be, but not nearly as sensitive as she was during the bad spell.
8) Radio and TV programmes will grab her attention, sometimes briefly but often for longer. She will often comment appropriately about something on the news. She follows many of the jokes on '10 o'clock Live'.
She never quite lost this in the autumn but it's become a lot more common now.
9) She is far more aware of other people, and will greet them appropriately and respond when they speak to her. She went through a period when she completely ignored other people.
I've probably missed a few of the improvements and will continue to revisit this topic as appropriate.
The things that may have helped to bring about these improvements probably warrant a separate post.
In no particular order of significance:
1) It's now possible to get S's more or less immediate attention when I need to. Even when she's very agitated and distracted, if I wait a minute or so and try again, we're usually successful.
2) Food and drink are hardly an issue now. When S lost so much weight - she was well below 8 stone and it was still falling - my attempts to get her to eat and drink dominated our days and caused great stress to us both. Now she has regained most of the weight she lost and has a good appetite. I no longer have to worry at all about nutrition.
3) At the depth of the autumn decline it was incredibly hard to get S into the bath. She hated it and seemed to have no idea how to get in or out. Two of us had to more or less lift her in and out - with little or no co-operation from her. Now I help her bathe almost every day. She steps in and out, just holding my hand and/or the wash basin for support. I think she gets to her feet from a sitting position more easily than I do! And I'm a pretty fit 67 year old!
4) Previously when I handed her her glasses she would often grab my hand rather than the glasses. She rarely does now. Similarly, when she got into bed it was very hard to get her head on the pillow - she would end up too high or too low in the bed and I would have to physically move her up or down, something she often resisted. Now she either gets it right first time or responds to instructions to move up or down without protest.
5) During the bad spell, she frequently referred to herself in the third person. I found this quite disturbing. She doesn't do this now.
6) S will now sit calm and still for longish periods, even when nothing much is happening.
7) She used to be incredibly sensitive to touch and would complain 'that hurts' almost whenever you touched her. She is still more sensitive than she used to be, but not nearly as sensitive as she was during the bad spell.
8) Radio and TV programmes will grab her attention, sometimes briefly but often for longer. She will often comment appropriately about something on the news. She follows many of the jokes on '10 o'clock Live'.
She never quite lost this in the autumn but it's become a lot more common now.
9) She is far more aware of other people, and will greet them appropriately and respond when they speak to her. She went through a period when she completely ignored other people.
I've probably missed a few of the improvements and will continue to revisit this topic as appropriate.
The things that may have helped to bring about these improvements probably warrant a separate post.
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