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Carers week…
Shame the MDC haven’t got anything about this on there main page. I think there is a real gap in support for carers in the 20-40 age bracket – or that mid band where you are not a young carer or an older person caring for a parent. Rather somewhere in the middle perhaps assisting a similar aged spouse. My husband can’t relate to older carers and older person’s impairments which seems the focus of organisations both locally and nationally. Wondered what folks on here thought. Sometimes we feel a bit overlooked!!
ps I have written a bit about this on my blog today but this isn’t a blog promotion lol!
Re: Carers week…Check out Well Spouse Association. This site is exactly what you are talking about. Although it is not disease specific several spouses have found themselves caring for their loved one early on as was/is the case in our situation. My husband began using a wheelchair in his 40’s and was diagnosied in his 30’s with FSH MD.
Re: Carers week…Despite not being based in the uk, I assure you this is not only an issue there. I live in Australia and have very similar issues with not being able to relate (not being a parent looking after a child with a disability nor a carer for a parent with as disability) to carers as they are typically seen.
I am one of my partner’s carers (his father is currently his primary carer but both his dad and I work full time, he works afternoon shifts and I work morning shifts so between the two of us we look after him).
As I tend to work mornings and he does not get carers in to get him up until about 11am, I take him to appointments that he needs to go to but I have issues with my coordinator not letting me be finished work in time to take him to specialist appointments despite weeks of notice.
She says that as I am not his primary live in carer, I have no right to ask for time off to take him to appointments. This is even more ironic as I WORK as a personal care attendant to people with disabilities, and granted the two of us plan to have a future and a family together, I need to be involved in his medical appointments.
The problem is that there is no support for someone in my position. If I was a parent, a wife or a child I may have some rights, but there is no one who can relate to my needs as a non live in partner (we only live apart because we are not yet married and his parents are catholic.. Enough said??)
I am only 27 and I agree that it is hard for people like your husband and I.. Sometimes it’s only through fora on the Internet that we can find the support we desire. Sorry if this seems a little disjointed but I’m testing out my new toy – a 2nd hand iPad which I am hoping will in some form prove useful to my partner.
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