Getting breaks has been the biggest issue for me
David (59) lives in Canterbury and is the main Carer for his wife who has Multiple Sclerosis. He finds it increasingly difficult to get a break from his caring responsibilities.
“My wife was diagnosed with secondary progressive MS in 1999. Her support needs have increased since then and she now uses a wheelchair and isn’t able to move. During the last 12 years in particular I’ve needed to do a lot more for her. We do have care workers come in every weekday to get her up but aside from that I really do everything else – transferring her in and out of her wheelchair using the hoist, getting her dressed, washed, toileting and feeding her. My sleep has been disturbed for a long time as she often wakes confused and needs moving several times a night.
Life changed gradually for us – you don’t realise it at the time but when you look back you can see that her MS has had a big effect. We have less freedom, can’t be spontaneous and everything is quite regulated. Travel is possible but difficult and her more recent memory loss and communication issues are very challenging.
The biggest issue for me has been getting breaks. I can go out and leave my wife for a few hours if she’s settled but nothing longer than that. In the past, I needed to sometimes go away for work and organising care has been difficult and time consuming. For longer periods or when I have tried to arrange a break for myself my experience is that respite places often can’t be guaranteed in advance, so that makes planning anything hard. Also we have found that many are not really suitable for my wife’s needs. We have sometimes had live in Carers for overnight stays but again that’s been difficult to secure and often requires additional support from our regular Carers which adds to the cost. I have not found anyone or any organisation that is able to arrange everything so she can stay at home whilst I am away and she has not settled to the institutional life of the respite homes we have used.
Having a break means putting everything at home to one side, a time to refresh mentally and be away from my caring responsibilities. Family do help when they can but we need care workers to come in to help them and still that’s only for 1-2 days max and I really would like some longer breaks. To be honest, a break would be more relaxing if she goes somewhere where all the expertise and facilities are at hand rather than stay at home because that would be simpler to arrange. If this were close to home then friends would also be able to visit.
My wife couldn’t live at home without me now but I think that generally support and access to respite care has actually receded as she has got more ill. It’s hard for me to think of any positives about being a Carer but we just get on with it as best as we can and take pleasure in the small things and try to make the most of our lives. We have many things to be thankful for but day-to-day living is undoubtedly interesting and not what either of us expected”
David shared his story with us as part of our Time for Me Appeal