Better Care, full stop

Chris’ story:

When my husband Douglas was diagnosed with a rare form of dementia three years ago, it was like a bolt from the blue and came as a huge blow to us.

Douglas was only 55 and had always been fit and healthy. He had a demanding full time job in the prison service and in his spare time enjoyed hillwalking.

He had been a bit unwell at the time and then collapsed. Doctors told us he’d had a mild stroke but when they did more scans they discovered he also had primary progressive aphasia (PPA) – a rare type of frontotemporal dementia.

I work as a social care officer and have always been an organised, solution-focused person. So at that point I thought: don’t worry, this won’t be too bad, we’ll be fine. But boy was I wrong.

Douglas was working until just over a year ago, when he took medical retirement. But since then his condition has progressed rapidly to the point where he now struggles to dress himself or use cutlery at dinner. He can no longer read or write and his speech is being increasingly affected.

I’m 43 and still working full time, but I now can’t leave Douglas alone for very long. We have limited support other than from my mum who lives nearby and friends have their own lives. So far I’ve tried to keep everything going more or less on my own. But the stress of it all is really starting to affect us and we’re feeling very isolated. The future frightens me at times.

It’s a difficult balance trying to find services appropriate for Douglas because of his age and the type of dementia he has. He is still physically fit and has a lot of things he wants to do, but can’t manage himself, and I can’t always be there because of work.

It just feels there are limited options available for someone Douglas’ age, and he can’t research or look into any options without full practical help from me. We had a post diagnostic support (PDS) worker from Alzheimer Scotland for about a year after Douglas’ diagnosis which was very helpful, and we’ve had some follow-up appointments with our neurologist. But I know not everyone with dementia has access to those services and it can depend on where you live. After the PDS ended, there wasn’t really anything for us.

We try to keep going as best we can but I’m now realising I can’t manage everything on my own.

We have a care package starting soon for a few hours a week which will hopefully give Douglas a bit more autonomy and give me a bit of a break too. I’ve looked into options around respite care and there doesn’t seem to be much out there. It’s fine to have a self directed support budget, but there aren’t many options for care and support that would be appropriate for Douglas.

But what can you do other than just keep doing your best and keep going? We have a motorhome and try to get away once or twice a month with our little pug Louie to give us a change of scene. It’s a difficult balance but we try to grab the happiness where we can and try not to worry too much about what the future might hold.