A Christmas hitch

The family party we hosted on Christmas Eve (to celebrate our 10th wedding anniversary and the fact that S had reached 65 and I had my 70th during the year) went pretty well. Then we spent quality time with S's family (4 generations including her 3 mostly wonderful grandchildren) on Christmas day.

On Boxing Day, they were due to come and collect S to take her across to an old family friend who was having a party and I would have had time to myself to finish clearing up after the party, amongst other things. Then it turned out that S's 2 year-old granddaughter had chicken pox! After thinking it through and trying to check the facts, it seemed foolhardy to risk any further contact with the child whilst she was infectious. Dementia is hard enough without the added complication of shingles.  One consolation was that when I told S there was no indication that it bothered her.

She had of course been in contact during the previous two days so the decision to keep her at home and forego the time to myself was not entirely logical. Even worse, one of my online friends referred me to the NHS website where there is a categorical statement: 'It is not possible to catch shingles from someone else with the condition, or from someone with chickenpox.'  (Apparently the reason why the Herpes Zoster virus sometimes becomes re-activated and causes shingles is unknown.)

So the only risk would have been catching chicken pox again (S had had it as a child) and this is pretty unusual.

Anyway, we were able to enjoy the youngest granddaughter's birthday party on the 27th.  

It's certainly encouraging that several members of the family commented on S's increased awareness, from time to time, of what is going on around her and I believe this is probably due to the medication (Co-careldopa) that she has been prescribed for the Parkinson's symptoms.

Donating your brain

Whether they believe in life after death or not, most people do not think of the body as having much use to anyone after death, which is why it is usually burnt or buried.

For many years now the principle of removing organs for donation where appropriate has been generally accepted and, in many cases, this can lead to other people's lives being saved.

You cannot, yet, donate your brain for potential transplant  -  and it is not hard to understand the problems, beyond the technical, that would be involved with that.

But you can still donate your brain, and your gift might help in the understanding of brain disease which could, eventually lead to potential treatments and cures. Neither you nor your relatives can use your brain after you and it are dead so that it could be put to use in this way is surely worth thinking about.

I hadn't thought about it at all until dementia came into my life.  I still don't think about it much but I'm starting to consider donating my own brain.  Even if it is not affected by dementia  -  and 20% of people in their late 80s will develop dementia  -  it could still be of use to researchers.

You can find out more here:

http://www.hta.gov.uk/bodyorganandtissuedonation/howtodonateyourbody/donatingyourbrain.cfm

There's even a Brains for Dementia Research Centre.

A visit to the dentist

For several years now I've taken S to see my excellent dentist (I've been going to him for over 25 years). She lost faith in the one she'd had for a while.

My dentist has always been brilliant and we had no problems until last year. Then S kept closing her mouth. She has a small mouth and had never liked having it 'open wide' for long but last year the dentist couldn't see very much at all. She wasn't refusing to open her mouth and was perfectly calm. I should probably have suggested that he could be more assertive but we left it there and he hardly charged her for what was hardly a check-up.

During the year since, I've thought about it a bit. When she had settled down on the chair I asked if he would mind my holding her mouth open. He had no objection but warned me that I might get bitten. He was able to do a bit like this - more than last year - but I did have the teeth clamping down on my nails a few times. I asked if he could try the clamps that they use and he found the smallest size and inserted it sideways. S was O.K. with this and he was able to see a bit more round the back. He said they looked pretty good and that I'd done well in my cleaning of them.

Result!

I dread to think what it would be like if she had to have treatment.

Disability Living Centres

These centres, run by a charity, enable people with physical disabilities and their carers to discuss the aids and adaptations that are available.  It's also possible to try out any of them that look as though they might be useful.  You can make an appointment with an Occupational therapist who will talk you through their features, uses, advantages and disadvantages.

Of course, you then have to buy them yourself (unless you are fortunate enough to have them provided by your Local Authority) but it is very useful to get free objective and professional advice prior to buying.

Finding the positives, even in small things

I try to look for positives in our situation. I sometimes see them and then forget. So I'm trying to keep a bit of a record. I'm jotting them down in a notebook.

I'm not talking major events of course and some of them are only noteworthy because I used to take them for granted and they haven't happened for a while. But in the last week:

I've twice seen S mouthing the words to songs, one of which we were singing at one of our groups ('It's a long way to Tipperary') and one I had on in the the car and was singing along to myself ('Da Doo Ron Ron').

Twice she's picked up a piece of apple that I'd put in front of her and started to eat. For ages I've been handing her pieces of fruit on the assumption that that was the only way they would get to her mouth.

I was helping her up from the settee, holding her hand and saying 'Push up', when she said, as she did it, 'If I can...' (it was a bit of a joke  -  she knew she could).  This after God knows how long when I think I've only heard yes or no.

It would be very easy to list the negatives of course.  This is, for everyone, a disease that, over time, is only heading one way.  But it's good to remember that these positive things still happen.