What Does the Pointon's Documentary Teach Us?
My wife (J. 62 yrs.) has reached in 1 year about the situation that Malcolm reached in 5. Much of the first hour of the documentary parallels our situation - with some divergence in detail and emphasis. I suspect that the remainder of J's life will be somewhat different since we have taken a different view as to how we will manage her as the disease tightens its grip on her.
Combining our experience with the documentary, I propose the following lessons that could be of use to those who research the disease and its management:
1. We need consistently good diagnosis and care management from both the NHS and the Social Services. To date we have had excellent support in every respect (except financial, but that is another story) meeting just about every one of the recommendations in the recent National Audit Office report. Clearly this is not common.
2. Social services need to ensure that carers have the necessary basic skills to care. They spent over 4 hours with J. and me both convincing themselves that I was not a stero-typical male and really could cook , clean, do the laundry etc. and that I had guidance on how to keep J. involved safely.
3. Social Services need to help the carer recognise his/her limitations and determine how to provide training and/or support. I am amazed at the difference between the requirements and inspection of a Care Home vs. the laissez faire approach to non-professional carers. When I worked with our care manager to prepare our care plan, I spelled out where I thought my ability to care for J. at home would end. This led to the acceptance by me and the family that she will need to go into a Care Home at some stage, even though shortly after disease diagnosis J. begged that we never do it.
4. There is a need for research and training on how best to enable sufferers to maximise their enjoyment of life. Malcolm retained the ability to play the piano (and play percussive rhythms) until the disease was well advanced. Did the music therapy help? J. had lost her professional writing skills at diagnosis and has now lost her professional painting and embroidery skills. The NHS and social services staff all felt (but did not know) that professional support would have enabled her to keep these latter skills for longer, but no such help was available - and I could only encourage, not help in any practical way.
5. Carers need help to manage the project of caring. I find that I call on my senior business (project) management skills almost daily. I find being able to separate managing the project from handling my emotions is crucially important for my ability to care and retaining my sanity. Experts helping me tell me that this is a major stress point for most carers.
6. The interactions between outside support and carers needs to be made much more carer-friendly. Any business that interacted with consumers the way the governemnt systems (NHS, social services, work and pensions) interact with carers would be out of business in very short order (and, in my experience, those who do the interacting know it only too well). For example, when I was told by our Care Manager to get the help of the Citizen's Advice Bureau to fill in the form for Disability Living Allowance, I bristled that someone who spent 6 years at Oxford really ought to be able to fill in a form. I did; but the mental gymnastics and brevity required were not simple - I saw why she made the recommendation.
7. Carers need help to plan ahead and deal with crises. We have benefited enormously and in practical ways from being very open with family, friends and neighbours (I went and talked with them one family unit at a time - including, at the parents' request, with one unit with a couple of children who live in our small street). We have clarity with the consultant, nurses, social services and GP's practice as to who we go to in an emergency - and have used it successfully on one occasion. We have an emergency plan written with key phone numbers always to hand. Our county has a scheme whereby we have a sticker on our entrance doors and key information in a tube in the fridge. In another county where we spend significant time we learned that no such thing exists and the Dr. surgery took over 20 minutes to provide addresses and phone numbers of local NHS facilities - we had to look up precise locations for ourselves. Jan (reluctantly at first) wears an international medical tag on a necklace - this was something we had to research for ourselves - everyone we talked to said they existed and it was a good idea, but nobody knew how to access one.
8. Carers need help with key documents - enduring powers of attorney, living wills, how wills should be drawn up with respect to joint ownership - especially of property, etc. We knew about these from helping my father and mother some years ago and had excellent professional support from our family solicitor. Many people will have no idea what is needed. Web site and other such material is useful but will not reach many of those who need the help. Face to face discussion and reminders will be needed. Again the care manager is essential.
It is good that research is on-going into the trigger(s) of the disease. This is the way that truly effective medications will be found (save for some serendipitous event). In the mean-time, considerable research and effort is required in these highly practical areas. It would be good to see pressure being applied for such research and structural support to be organised and carried out; the return on investment surely would be huge.
