David by Janet Carpenter
After many years working as a Civil Engineer in Nigeria and the Middle East, David returned to England and seemed very content, living in his flat in London and getting to know the city `like the back of his hand'. He used to socialise with family and colleagues, visit jazz clubs and sing in choirs. But we began to realise that he was becoming more of a `loner' and less communicative. His connoisseur attitude to food and wine was changing - to quantity (of alcohol) rather than quality. He became distant and down at heel and difficult to talk to, but I did get him to talk one day, only to discover he had been out of work for a year, having received redundancy instead of the expected Partnership. He had not signed on, expecting all the time to be offered one of the dozens of jobs for which he had been applying; but this was at the time of an enormous slump in the building trade, he was aged 51 and somewhat eccentric. However, he appeared to remain positive and managed to get some temporary jobs over the next three years. I knew things were far from right with David but it was difficult to get close in order to help: I knew something would have to give ......
The hospital contacted us late one evening in February. After being found unconscious in his flat, David had been admitted as an emergency two weeks earlier. They had just managed to piece together my name and bits of address. We hurried to London and found David in a very confused state, asking first how I had travelled to Zimbabwe by car! He looked quite well but had no idea of time or place, and no short-term memory. On admittance, someone had recognised possible Wernicke's Encephalopathy and immediately began treatment with large doses of thiamine by intravenous injection. But he had already suffered serious brain damage and was now diagnosed with the long term condition, Korsakoff's Psychosis. We were told that David would never learn anything new and would need to live in residential care. This was a terrible shock, an unimaginable prospect - but the watching and waiting for something to happen had come to an end.
A new phase in our lives began. My husband and I began the totally alien job of looking for a residential home, near to us, for my younger brother who had always been so independent, clever, generous, content, and, I thought, “in control�. After several weeks (with me visiting David in hospital every weekend - a complete surprise to him every time I appeared - and trying to prepare him for the move to Leicester, we found a home that seemed slightly “less challenging� to our senses than the others. On accepting the room I felt scared and worried because I really couldn't imagine how he would settle into such a place, living communally with young men and women with a variety of mental health problems. But there was no alternative. We also started what was to be a long but futile search for some ongoing specialist, medical and social support.
The move was fairly traumatic, with David ringing late at night to demand that we get him out of here. I visited several days a week and we walked and walked round the immediate vicinity until David began to recognise some landmarks. We walked a little further each week, we went out in the car and he visited us at home. Slowly he began to settle and even venture out on his own (with his address and telephone number in his pocket). Interestingly, when he was staying with George and me he could find his way round the village because he knew it more than seven years ago; before his memory blackout. But he couldn't remember that our brother had died in the past year. Gradually we extended our walks, through Victoria Park, down New Walk and into town, over and over again. After about a year, he was meeting me half way! Occasionally I lost him. One day he opted to wait outside BHS for me. Feeling anxious, I rushed to make my purchase and hurried outside again; he wasn't there. Forty five minutes later I found him waiting in a similar position but in a parallel street. I was in a state of panic, but David had no idea he was lost and thought I'd been away only five minutes!
Occasionally, David would become quite agitated and say that he had to be in London for a meeting. He talked about jobs he was still working on, said he needed to ring the Contractor, wondered where his credit cards and cheque book were, etc. but he accepted my explanation that he was not well and couldn't go back yet - and soon appeared to forget his agitation. Even now, if asked to give his address, he will give his old London one: I have to remind him to give his Leicester address, of which he sometimes remembers bits!
The question of alcohol has been a tricky one, but more or less resolved itself. I have heard and read that unless the patient abstains totally, then further brain damage will be caused. I have also heard that a limited intake, together with regular meals, should not have a detrimental effect. David is unable now to look forward to many pleasures in life; but the thought of a pint, or a dish of pasta with a glass of red wine, momentarily brings back his old self?. So we have decided not to deny him these pleasures. It was difficult at first to limit the quantity, and upsets would be caused as I tried to explain. Now he has (mostly) accepted the situation and there are very few awkward moments when he tries to push the limits. If he goes out on his own, then the amount of money he is given limits his alcohol intake. There appears to be no worsening of his condition, in fact after a social drink he is more talkative and relaxed and our time together is more pleasant. Shopping for clothes or shoes has to be done after a sociable lunch, otherwise it would be such a fraught experience that we would go home exhausted and empty handed!
After six years, David is in his third residential home. The first, which we grew to quite like and where David began to settle reasonably well, was closed down at short notice for administrative irregularities (we never discovered what they were). I was pleased to find the next one, which was quite luxurious and David looked comfortable in his own apartment, but with communal meals. However, serious difficulties arose, he became very isolated, the staff did not understand his condition and I had to become closely involved once again, having reduced my input to only two days a week. I consulted the social worker (who is in London because David lived there prior to his illness!) who came to visit and agreed he should move again.
Although I was seeing David only twice a week, many more hours were spent on paperwork and telephone calls, dealing with finances (as Receiver), trying to find suitable day centres or other activities, attending any group or meeting that might provide useful information and trying to access some specialist Korsakoff's care. I discovered specialist homes in Margate, Glasgow and Devon but David didn't want to move to these places. No organisation in or near Leicester could offer any specialist care or input. I also spent many hours on telephone calls, correspondence and meetings trying to get the social work care transferred to Leicester, but it still hasn't happened.
David's third home has 18 residents aged 25 upwards with various mental health problems. His physical needs are reasonably well cared for but the staff find it very difficult to understand David and his condition. As an intelligent, intellectual gentleman who can appear confident and independent, he does not obviously fit into the residential home setting. I would say the ethos is "laissez faire", with easy going staff who get on with necessary housekeeping tasks and respond to problems as they arise. Definitely reactive rather than proactive, although this is contrary to the fine words and statements printed in the home's glossy brochure, that “each individual will be encouraged to develop a sense of self-fulfillment through developing skills and support. This is a complicated, ongoing, contentious issue on which I will try to elaborate because it is important and the cause of considerable frustration and upset - mainly to me.
I said earlier that David can appear confident and independent, but this is his manner combined with confabulation. The company management (who own about 50 homes) say that they must respect his independence and allow David to do what he chooses. The major symptoms of Korsakoffs are lethargy, confabulation, loss of/confusion over short-term memory, social skills and reasoning. I find the lethargy and confused reasoning the hardest to cope with, with social skills a close third. So there is considerable conflict here. Given a choice David will:
- do whatever is easiest - eat whatever is presented, watch TV, read the nearest book, put up with the loud music of other residents, go to bed at 8pm through boredom. Go along with the rest rather than put his own opinion at residents' meetings (a visit to the theatre)
- not complain or consult staff, even when he is left to sleep on a bare mattress because his bedding has been taken for washing and not replaced; when his shoelaces or razor have broken or he is out of toothpaste (I have to notice these things and get something done).
- fill the gaps in his memory with amazingly convincing stories (often with an element of truth from somewhere in the past) - this is confabulation, but the staff still don't understand.
- be given Ј10 for a haircut and spend it in the nearest pub.
It seems obvious to me that people with these symptoms need proactive care. They live in care because they are unable to make appropriate decisions and choices. This is such a difficult area and one I wrestle with frequently - how to decide what is best for David, usually without David's co-operation!
I know of the things he liked to do before his illness - and still likes to do, if I organize them. We attend orchestral, choral and jazz concerts, plays at the theatre, go for long walks in the country, visit historical towns and cities, art galleries, museums, craft centres; we eat out, he likes to buy the odd mango or avocado pear. If we didn't do these things together he would certainly stagnate and lose what is left of his diminishing identity. I am very fortunate to have a friend who accompanies David and me on many of our outings - and, reassuringly, she keeps in touch with David when George and I are away on holiday.
David can now meet me at a prearranged venue in town - and 95% of the time he arrives on time having taken a 30 minute walk from “home�. I explain the arrangements in detail to the staff so that they can remind him as appropriate. Management of money and keeping his calendar correct and up to date are vital and some staff are beginning to realise the importance of these. We do move forward, very slowly, but frequent staff changes mean a slide back again.
An alternative, of course, would be for David to live with George and me: but unfortunately that would ruin our lives as well. David cannot fit into a family setting. With just me around, he is relaxed and makes himself very much at home, but if George is around David will totally ignore him and the atmosphere is uncomfortable. Having discussed the situation and agreeing that I can't always be out with David, we have agreed it is better if George keeps busy in his workshop or another part of the house - and often we even eat separately. When I have tried to talk to David about his attitude, he cannot see that there is anything wrong. David and I play Scrabble, use the computer and he likes to cook a light meal for himself, though I have to hover and keep a watchful eye to prevent disaster in the kitchen. He also likes to take a shower, but similarly, the bathroom needs a major mopping up operation afterwards! But at least he can have some hours of near normality every so often.
This is the dilemma, then:
- David cannot live in a "normal" family home.
- If I left him alone in his care home and had no contact or input - he would settle into that regime and forget (and lose) his interest in music, theatre and art, good food, long walks, gardens and historical buildings. He would become - I dread to think....
- So, I think I have no alternative but to continue with the present situation, with David experiencing both the institutional and normal lives. I don't know whether this is best for him, and eventually the “care home effect will predominate because that is where he has to spend most of his time. He is unaware of all the difficulties that George and I have to cope with and all the time and effort I put in and frustration I suffer in trying to work with the home management and care staff. But to be honest, they are just not used to relatives taking an interest and I am something of a lone voice. However, we will carry on with this in between existence, and on the good days when I am feeling strong and more positive, I will continue to work to try to raise awareness of the need for sensitive, stimulating and structured environments, with better-paid and appropriately trained staff, for people like David.
Janet Carpenter.
Share Your Experiences
If you would like to write about your experiences related to caring for someone suffering from Pick's Disease, please send your final copy to either Carol or Penelope.
back to list
|
