The essence of the person

Some time ago now, a neighbour was asking after S and I tried to explain that, even though she can hardly speak or do much for herself she is still, demonstrably, S. The neighbour, who has had some experience of dementia said, 'The essence of S is still there!' This summed-up the situation so well that I was overcome with emotion and had to end the conversation.

I realise that we are very lucky in this respect. Some people with dementia turn into a completely different person who may be aggressive and spiteful where they were once friendly and caring, for example. Others may become such a shadow of their former selves that they are barely recognisable even to their loved ones. Some may reach a stage where they do not recognise their loved ones and may become suspicious and wonder why a stranger is in their house.

But S is still very clearly there. She still smiles a lot as she has always done (except for a brief period of about 3 or 4 months when she was tormented and paranoid). She still does her best to be helpful when she is being moved around from commode to bed to wheelchair or 'rolled' from one side to the other whilst being dressed. She still mouths the words to some of her favourites songs when we go to our weekly 'Singing for the Brain' and occasionally actually sings some words softly.

It wasn't so long ago that she clasped a carer's hand after something that had been done for her and said 'Thank you'.

She still understands a good deal of what is said to her, providing she is not too distracted by what is going on in her brain.

Most encouragingly, whenever we help her to stand and take a few paces (with a good deal of support) the determination she shows is unmistakeable.

She was always a quietly determined person  -  it's part of her essence.

An Update on S

I realise that I'm probably posting less about S these days. I've mentioned her two fits this year and given readers some idea of how the loss of mobility has changed our lives. But I feel that I have not properly recorded how NHS Continuing Healthcare Funding is helping us to get back to a way of life more like the one we had before the first fit. We are able to employ carers who not only help me carry out basic tasks like getting S safely onto the commode or into a bath but also accompany me when I take S out in the wheelchair which we do as often as we can. It's clear that she really enjoys getting out of the house after months of 'imprisonment', just like me! We have also exchanged our car for a wheelchair accessible vehicle. After a little practice we can get S and the chair up a ramp, into the car and have both the chair and S safely strapped in very quickly. We have been able to return to the weekly 'Singing for the Brain' sessions that we so enjoy. S occasionally joins in with the singing and always enjoys the social side, meeting people we have have now known for several years. But such activities are also quite tiring for her now. She often dozes, after a late breakfast, and wakes up at lunchtime but if she has had a busy day the day before she sometimes sleeps for much of the afternoon.

It helps enormously that we have one extremely positive and helpful carer who we see nearly every day and have just appointed a second carer who will clearly be very helpful as well.

Despite this I am still solely responsible for S's health and welfare for many more hours in the week than I am jointly responsible with a carer. I do feel down at times when I'm coping on my own, particularly when things are not looking good. But I always appreciate the fact that being able to look after S personally, with very helpful support, is a great privilege. I don't know how I would cope if she were being looked after elsewhere.

In the Personal Budget, there is financial provision for 'respite'. This is normally taken to mean that the person living with dementia is looked after for a short period in a care home or by home carers whilst their partner has a break from caring. I have not yet reached a point where I would feel happy doing this. I currently use the money to pay for home care one evening a week to enable me to go back to a jazz improvisation group I was attending before S lost her mobility. I do find this therapeutic.

I will try to post more regular updates on S as we are learning new things about how to cope fair regularly