Better care, full stop

Bruce’s story

Caring for someone you love can be tough enough without having to fight for even basic care and support. 

My wife Alison, who’s 66, was diagnosed about four years ago with Lewy Body dementia and her condition progressed quickly.  

I had already retired by that time due to my own health issues and I was happy to care for Alison at home. I thought we might get some support from the local authority as we lived alone with no family nearby. But it’s been a struggle and a lot of the time I felt like no one was listening to me. 

Fortunately we were put in touch with Alzheimer Scotland and they have been a massive help. We were assigned a post diagnostic support worker from our local centre in Aberdeen and she was great, giving us lots of information and telling us about events and activities. That lasted about a year and we still go along to the centre every week. I don’t know what we’d have done without them. 

I had been managing to care for Alison on my own for the first couple of years. She needed a lot of support and I would get her dressed and help her with personal care too. But things got worse just over a year ago. I fell and broke a small bone in my shoulder which meant I couldn’t physically care for Alison in the way she needed. We had a care package in place and I asked for more help, but nothing was forthcoming. 

I then found out I’d need to spend a night in hospital for a shoulder operation and needed respite for Alison. But again I was told nothing was available. Luckily my brother was able to travel up from London to help for a couple of days. 

I was feeling exhausted and isolated by this point and I could also see Alison’s dementia getting worse. I was then told I’d need another overnight stay in hospital. But who was going to look after Alison? There were still no respite beds available. It all got too much and about four months ago I had a bit of a breakdown. I just couldn’t go on anymore. 

It took multiple phone calls from the Alzheimer Scotland staff in Aberdeen as well as from our daughter Emma and another charity who’s been supporting us to finally get help.  

It’s not right that you only get the care you need when you reach crisis point. Any carer going into hospital overnight should be given respite care automatically if they need it.  

There’s more and more people being diagnosed with dementia and yet you hear about dementia services being cut. It just doesn’t make sense. Cuts will just make the situation worse for everyone. You have specialist nurses for conditions like epilepsy and diabetes – so why not for dementia? We need specialist dementia care and support for everyone who needs it, right across Scotland. 

Alison moved into a nursing home a few months ago and she is being well looked after there. But if we had been given the care and support we needed – not until we were at breaking point – then she could still be living at home with me now.