Friday, 17 February 2012

Progress report

There's no doubt that, over the last few weeks, things have improved significantly for us. As I've noted before, we have started getting out for walks again, though the weather is sometimes a deterrent. Even though S talks non-stop all the while we are walking and is often quite agitated this seems to 'get it out of her system' and she will sit quietly for a long time when we get home. It's also encouraging that her walking is as good as it's been for years. We've also been supermarket shopping together and had lunch in the cafe without any problem. On another occasion, we stopped off for a pub lunch whilst out walking. These are simple things but, when life was at its worst I didn't really expect to be able to do them again. You may be wondering how this has happened. The support we've had from family, friends and 'online friends' have certainly been invaluable. I know from reading online forums how many dementia sufferers, particularly the elderly, have to spend so much time 'home alone' and how many carers seem to have little in the way of support and my heart goes out to them. I think also that we've got more used to our situation - the sudden decline last autumn really hit me like a brick so that even though I'd always known that things would get worse I'd never expected it to happen so dramatically and then for a while things just seemed to carry on getting worse. I realise now that S was probably just as shocked and distressed as I was and that she didn't want to be the apparently helpless person that she seemed to be so has been making real efforts to respond to my suggestions, requests, and thoughts about what might help. Over time too her 'conversations' have become generally quieter and are not quite as negative as they were - more happy talk - though she still gets agitated and aggressive in brief bursts. Getting her to bed has become so much simpler than it was at one time as we have established a routine and she rarely protests when I or her daughter (who is still round at bedtime a couple of times a week) suggest going up to get ready for bed. Plus we've got better continence aids at night from the clinic so this cuts down the washing and means we both get a better night's sleep as S does not wake up too early. There has also been some improvement in terms of the incontinence.And there's good news on the food and drink front. Sheer persistence and lots of tips from different people, including the community dietician, have worked. I just have to accept that she is keener to talk than to eat and that meals take a long time. I tend to do a lot of calorie rich sandwiches but some kind of evening meal with dessert for which we sit up at the table. This week we've started sitting up at the table for breakfast too. S is only drinking apple juice at the moment but drinks a lot. Now she is over 8 stone and gaining weight all the time. People keep telling her she looks better. She does, and I keep reminding her that this is because she is eating and drinking properly. Support from professionals is still very patchy but I was put in touch with carer with long experience of working in dementia homes and I pay for a few hours from her each week. She gets on well with S, who really likes her and the carer is able to do more for her and with her as she gains her confidence. So I'm able to do a little more of the things I need to do and even some of the things I want to do! I think both of us are benefiting from this arrangement. In the last few week both my stepdaughter and I have noticed that S is more aware of us, asking how we are and responding more often to attempts to talk to her. She's also taking the initiative more with the cats which I'm very glad about as we got them for her but initially she barely seemed to notice them despite being a lifelong cat lover. There could be all sorts of reasons for this but I'm pretty much convinced that the fact that I've carried on giving her small daily doses of Aciclovir - the anti-viral drug prescribed for her herpes outbreak is a factor in the general improvement. 
(New readers see this:

So all in all, there's a lot to be grateful for but I keep reminding myself not to expect too much.

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