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

Respite

It's very common for carers to be offered 'respite'. Typically, the person they care for will spend a night, or some night(s), in a care home so that the carer can have a day or few days respite from the demands of caring.

I haven't done this yet but since S has been given Continuing Healthcare funding I could easily do it in the future. There's a specific budget available. But, and this is something that you have perhaps to experience to appreciate fully, even now I find that my efforts to do more, get out and see friends etc are limited by my need to know that S is OK - even though I know that she is being well looked-after. There's almost a time-limit sometimes - I feel the pull and have to come home. Even though I talk about longer respite - even a single overnight away e.g. - I currently find it hard to imagine myself doing that. She still depends on me - I've kept her going. And as a result, I'm somehow dependent on her.

I think I might well eventually come to accept that extended respite, i.e. beyond a weekly 'evening off', will be necessary but I also feel that the difficulty that many carers have in accepting this is underestimated.