Who can be helped with care?
James came into our care unable to complete any tasks for himself. He was disorientated, confused and incontinent. Over the next two years he became less confused, and able to complete his own personal care with only minimal prompts. He helped around the home and also assisted other residents. He improved in all cognitive areas. He was able to play a great game of chess, enjoy snooker (not pool) and helped the children to learn tasks like tables and how to fasten their shoelaces. He has infinite patience and became a valuable voluntary worker for a number of local groups. James showed me how a person who was not expected to show any recovery and was only with me "until he deteriorated to needing EMI nursing care," can improve. Although he did not fully recover, he still showed small but significant improvements. James had a superior quality of life that was much more fulfilling than being placed in long-term care.
The last time Bryn Derw had an empty bed, in 2001, we had 18 enquires for it. The word had spread about the improvements that can happen to this client group when given the appropriate care package. It was very difficult to have to refuse so many people and we had to carefully assess who would benefit the most from the specialised care we could provide. We realised that another unit was needed to provide care to more people in need of our services. Instrumental in the development of our new specialist unit was one client, who was unable to be accepted into Bryn Derw because he was non-weight bearing and the bedrooms were upstairs.
At assessment he presented as being-such a character and he offered us as a real challenge - thanks to a very persuasive social worker! We felt that a package of care could be provided for him with myself providing outreach work to him in another home, which could provide him with the day-to-day residential support. Bill was extremely fearful, confused and living in about the late seventies-early eighties; he confabulated to compensate for his poor short-term memory. Parts of his past appeared to involve violence and illegal behaviours and he spent most of his time in his room, frightened that someone was coming to get him. He seemed frightened of his own reflection and could not believe it was himself he was seeing: the man in the mirror was in his forties and he was only twenty-three.
As with all our clients, from admission to hospital and until the present day, he has remained alcohol free. Bill calls himself the "Korsakoff's kid". He has shown great strength of character during his stay. He has accepted his illness and its cause. He is now walking with a stick intends to push himself into jogging again one day. The joke is, and Bill is a joker, that I don't think he ever jogged before. He is very motivated: he prepares meals for himself and others; he enjoys collecting stamps and coins; he makes models and keeps us all on our toes, and is moving more towards independence. Bill now knows the date and year and, more importantly, knows he is in his forties and not his twenties. He has also learned how to deal with and recognise intrusive thoughts or memories from the past and now knows what is real and not.
His room is plastered with notes and he keeps a diary better that any one I know. He knows his limitations and he admits he had a drink problem and knows more than the others in the unit that he can't risk what he has recovered by drinking alcohol again.
The home Bill was placed in was extremely supportive and caring and the management and staff were happy to be given advice and care plans. They all worked with us at all times to the benefit of the resident. It was this home and the company who owned it that gave us the opportunity to increase the size of the unit.
A New Way of Life
When we were given the opportunity to move into larger premises from a small, three-bedded residential home, it was a difficult time. We realised that the service we were providing needed to be extended to offer more clients a rehabilitation programme and in fact a new way of life.
Within the smaller residential home we had cared for ARBD sufferers for four years, developing tactics for the management and rehabilitation of Korsakoff's syndrome. Each client came along with their own needs and differing degrees of brain damage. All are individual and each needing individualised packages of care. Yet they each support and understand the problems and concerns of each other.
Each needed a purpose to get up in the morning; they needed activity and compassionate companionship.
They were, and still are, very caring of each other. They do not appear to get on each other's nerves and you never hear a resident saying to another resident, "You've already told me that," even when the same anecdote, story or joke is being told. I have still not worked out whether this is due to their short-term memory problem, good manners or genuinely caring natures. To me they are all like a chrysalis, or as I have said to them many times, like Scrooge in "A Christmas Carol," beginning a new life.
Time and again when assessing clients prior to admission, I am told he/she is funny, and a great character unless they have a drink, and then they are aggressive, violent and difficult. One relative, after her father had been with us for 6 months, said, "I now have the father I knew he could be, but he never was because of the alcohol."
Our move to the specialist unit took place in November 2002. Three residents moved from Bryn Derw and joined Bill.
Within the first two months two new residents and two members of staff joined us and the development of the larger unit was on its way.
The logistics of putting into action care plans, activities and rehabilitation programmes on an increased scale, without losing the homely atmosphere and the therapeutic environment has been difficult at times.
These programmes can only be met and developed with high staffing levels and devoted, caring individuals in these positions. To ensure staff levels match the programmes, funding is a major issue and I spend more of my time than I am personally happy with developing care packages and applying for funding for future clients.
As for the staff, they have come together from many areas of care and an excellent team is developing. Each comes with their own personality and individual skills, but they are non-judgemental and extremely supportive.
The unit, in the final phase had an 18 bedded admission and continuing care unit. A six-bed rehabilitation unit has been developed, where clients are encouraged to work together, to clean, prepare meals and recover their lost abilities together. On this unit we start to help them to develop new social networks and a work ethos is followed to provide them with a purpose. We all have a need to be needed and these individuals have a greater need than most.
At our Day Club we spend many hours on the subject of alcohol and work towards the day that they can enter a drinking establishment on their own and order a cola. To this end we have had nights out and lots of fun in clubs and intend to go on holiday later this year.
The upstairs of the unit -consisted of six independent living units where clients develop their skills further, before their future return to the local community. Our clients very much wish to help others with this problem and remain in the area to provide support to new residents in the unit: moving on but yet supported and not isolated. Judging by the many referrals and enquiries from all over the country, this unit is hopefully the start of many others. We at Carenza Care unit want to let people know that there is life after ARBD and it can be a lot better. Some of our chrysalises have made beautiful butterflies. [ home ]
Anyone.
You would be forgiven for thinking that this condition is only the problem of the hardened alcoholic, with the stigma of alcoholism as a major issue in their care. The label would therefore conjure up the image of an out of work, incapable person. Indeed areas with high unemployment seem to have a greater prevalence of clients with ARBD. However, I have cared for accountants, nurses, policemen, bankers and many other professionals; it can hit all types of people and personalities. The only way to not develop this illness is to not drink alcohol to excess.
My care of clients with Korsakoff's syndrome began in 1997. Prior to this date Lynda had come across the illness but only a couple of times, and fleetingly. In 1997 Lynda, I opened a small residential home for three in Llandudno called Bryn Derv One of the first clients was a lady with Korsakoff's syndrome and myself and Lynda were hooked.
My clients and the other sufferers of ARBD throughout the UK are, I feel, very much the lost people, like the lost mariner in the book "The Man who Mistook his Wife For a Hat" by Oliver Sacks: lost and forgotten. No one or, more importantly, no single service, wants to "own" them. This leaves them as vulnerable as they were before their diagnosis. The only difference is that they are not on the streets or living alone. Their exploiters are not the un-knowledgeable, but the professionals through lack of knowledge. Many times I have been told, "You're wasting your time," or "KS? No one improves with that."

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