A sense of achievement

Being a carer is stressful, even when the person you care for is as amenable and calm as S. When I talk to other carers it's clear to me that some of them, like me, are helped to keep going by trying to solve the problems that the condition throws up or those that arise when you try to lead as normal a life as possible.

For example, people ask me why I continue to take S away in our camper van, especially as we have gone abroad at least once each year even since she was first referred to the memory clinic and we still do this. First, of course, I have to say that I wouldn't do it if S objected. But not only does she not object, I am sure that, like me, as well as still being able to enjoy aspects of the whole experience, she feels a real sense of achievement and often smiles and gives other signs of satisfaction when I'm talking to other people about our adventures.

Another example: I never expected to be writing about bowel habits on this blog but.....move away now if you are offended. I always describe my wife as doubly incontinent as that is how she would be described medically, and the continence specialist to whom we were referred assumed that this would now be a permanent symptom of the condition. Urinary incontinence usually strikes first and those who believe in 'the stages of dementia' put it in the later stages and remark that late stage dementia often involves double incontinence.

I've always thought it odd that for S things developed the other way round.  Like so many people, S had a longstanding tendency towards constipation. So when, three years ago, she started to have soiling problems, we used any number of laxatives and other drugs which various medics swore by. They turned out to be worse than useless. They simply complicated the issue and, whatever dose of whatever drug you used, you never really knew if there was any progress. Sometimes there seemed to be, but then you were suddenly back to square one.

Fast forward three years. For weeks now, there hasn't been a problem. S has emptied her bowels around 4 times a week and is completely clean all the time, i.e. 100% goes down the pan. This hasn't been achieved suddenly of course. There have been false hopes in the past but overall things have gradually improved over time.

How has this been achieved? I expect that this is what some carers reading this will want to know. So these are my tips, mostly discovered by trial and error:

1)  Regular exercise, e.g. we aim to walk at least 5 miles a week whatever the weather and we usually exceed this target.
2)  Vegetables are very important. We tend to eat a lot (we don't eat meat). Some vegetables are extremely effective - carrots, sweet potatoes, squash, onions all work well for S so I concentrate on these every second and, if necessary, third day.
3)  Insoluble fibre, particularly wheat bran and anything that contains it, has to be treated with caution as it can have exactly the same unwanted effect as the drugs.
4)  Soluble fibre, in particular oat bran, is great and much of the improvement can be traced back to when we started to have porridge for breakfast - real porridge not instant refined muck.
5)  We discovered that immediately after the evening meal was the optimum time for a successful visit to the loo.  If there is no result at first, I have found that a fruit dessert, e.g. apple crumble, nearly always does the trick.
6)  Before every meal I give S fruit finger foods  -  mango, melon, apple, pears. I've always understood the importance of fruit but this fairly recently introduced tactic means that S eats more fruit than she did before.
7)  Obviously, it's also important to keep hydrated and this is sometimes difficult  -  S has to be watched to avoid spills and she sometimes drinks very slowly.

I'm sure none of the above is particularly novel.  And what has worked for S may not work for others but I hope that they may be of some use to someone.

Now I'm turning my attention to the urinary incontinence though I reckon this will be an even harder nut to crack, especially as S has used pads for so long

Rehabilitation

Many people will scoff at the idea that rehabilitation of dementia patients is possible.  I think we can all agree that 'restoring' a person to their pre-dementia state is currently impossible and likely to remain so for a very long time.

In any case, recent publicity suggests that, even non-dementia conditions like brain injury and stroke where people are sometimes helped to regain and, in some cases, all of the abilities they have lost, those professionals who are 'caring' for them are sometimes untrained in the techniques of rehabilitation.  It seems that some people who could and should be rehabilitated are left alone, to decline further:

Secret filming highlights poor care of brain injury victims

So it's no wonder that those whose responsibility is to care for and treat people with dementia sometimes seem to do very little even to help ameliorate physical symptoms which may or may not be a direct result of the dementia.  I have been reading online accounts of carers who have removed their partners from care homes and achieved surprising physical improvements which are clearly good in themselves but which may also have a knock-on effect in terms of the dementia.

One such carer is writing a book about his experience.  He has 'before and after' photos which clearly show a dramatic improvements in his wife.  If he is able to find a publisher, his book deserves to be a best-seller.

Empowerment - and disempowerment

One of the most frustrating things for someone with dementia must be the sense of losing control, of being unable to do things for yourself, of having to rely on other people for help with the most personal of tasks. Just the thought of being in this situation is pretty scary for most people who aren't in this situation.

Even if we weren't able to work this out for ourselves, people with dementia who are still able to do so tell us that this is the case. Much of the agitation and aggression commonly demonstrated by people with dementia who no longer have the language skills to explain their feelings probably arises from this frustration.

It might therefore appear strange that one common method of communicating with and dealing with people with dementia stresses the idea that they can feel secure in the knowledge that all their needs will be taken care of, that they no longer need to worry about doing anything for themselves. Is this what you wold want to hear in that situation?

To me, the approach appears deeply flawed. You're telling people who feel totally disempowered that they ought to enjoy that feeling. How frustrating is that!

More importantly, the best way of losing a skill is to stop trying to use it. If everything is going to be done for you, the few things that you can do for yourself will soon fall away. And your carers will have no idea of what you might be able to do with a little help and encouragement.

It's very easy for a carer to fall into this trap even if they don't accept the ideology. In many ways, life appears to go more smoothly if you do everything for the person with dementia because you can do almost anything more quickly and more efficiently.

But then you'll wake up one morning and realise that there's nothing they can do for themselves.

Unanswered questions

Browsing online forums, I've seen two interesting questions raised. Neither of them has been answered. In fact they've been more or less ignored.

The first questioner, whose parent has vascular dementia, asked about the possibility of rehabilitation. One can see where she is coming from. Vascular dementia is often described as a series of mini-strokes (though some of them are not so mini it seems). We frequently hear about stroke patients who appear to have lost many of their abilities but gradually regain them with intensive help. So why, apparently, is no attempt made to give similar help to vascular dementia patients following a mini-stroke. They are often described as typically 'plateauing' after each mini-stroke and this would seem to be the appropriate time to attempt to help them make good some of their deficits, at least partially.

If I'm right in believing that this is rarely, if ever, attempted is it because the assumption is that any ground regained will quickly be lost when the next downturn occurs? Is it down to lack of resources? It would be interesting to know.

Another person asked about the possibility of counselling to help people with dementia. To those with no experience of family members with dementia, this might seem a silly question. It's not, for at least two reasons. These days, some people are often diagnosed quite early  -  at a time when they are able to communicate pretty adequately and when they often have a fair degree of awareness of their condition. There are also people that one comes across who have the ability to communicate effectively even with people who are at an advanced stage and who could probably help them in a 'counselling' way.

Actually there do seem to be some pockets of good practice in this respect, but mention the idea to most professionals and it doesn't seem to get you anywhere.

It amazes me that, given conditions for which there is no cure, so little effort is being put into developing effective treatments, other than into drugs which help some people to some extent but also often have unpleasant side-effects.