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, Sue 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.