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Slightly Disheartened - Carers UK Forum

Slightly Disheartened

Tell us a bit about yourself here.

I've been a carer for most of my adult life first for my mother who died around a decade ago and then for my father who had a series of strokes soon after. These strokes led to vascular dementia and left my father confused, violent and terrified.

Thankfully the violence has dissipated as he's slowly regressed; although this has presented new problems. He is now doubly incontinent, wheelchair bound and unable to weight bear.

Being a carer is an extremely altruistic thing to do, especially for someone with dementia, but don't expect any sympathy or respect. Over the many years I've been a carer I've come to realise that the state along with many others, hold us in a very low regard.

I spend between 100 to 140 hours a week looking after my father, often not returning home for days. The worst part isn't being on means tested benefits, it isn't the sleep deprivation or stress, it isn't watching my own home deteriorate or having people ask why I can't sell it to support myself. No, the worst part is the never ending abyss of loneliness.

Okay that got away from me, TBH I don't even know why I'm posting this.

David, I think you've just said what so many others feel, for me the loneliness and isolation are absolutely the worst thing, that and many friends just vanishing over the years. Like you, I can cope with the lack of spare cash and the endlessly long hours but the thousands of hours of solitude over the years have driven me past mad, I think, and into some sort of fairy land the other side :)

The only thing I find that helps a bit is the internet and thank heavens for it, groups like this where people understand and know exactly how you feel. It's not the same as face to face contact and a great big hug but I think it's the next best thing. There are people who know exactly how you feel, even though they can't be right next to you they're there in cyberspace holding your hand :)
Hi and welcome, Dave. I'm glad you've come here as now you won't be so lonely.

Talk about anything you like, we'll understand. :)
Hi David and welcome.
Not exactly personal contact, but we are the next best thing and we understand where you are coming from.
Join in anywhere.
Hello David and welcome to the forum :)

Your post will ring bells on so many levels for so many Carers - but here you aren't alone, we understand.
TBH I don't even know why I'm posting this.

because you really need someone to talk to, someone who will listen. No-one who hasn't cared for a loved one can fully understand just how heartbreakingly isolating it an be.

Do you manage to get any 'me' time ? And do you have support from Social Services or perhaps from your local Carers Support group ?
mumwhocares wrote:and into some sort of fairy land the other side :)
lol I needed that laugh.

I'm off in cloud cuckoo land thats for sure, although maybe sleep deprivation has something to do with that. :)

Hello David
Welcome to the forum its hard isn't into words how you feel, sleep deprivation is a whole other world and needs its own language. Lots of people here to listen.
Word of warning some of the threads on here will make you cry, manly in your case of course, and some will have you laughing out loud!!!! Its a good place to be :)
For the first 6 or 7 years I had no help, which was an extremely hard time because given my fathers level of agitation I got next to no sleep. It was the hardest thing I've ever done, but in the end I had to ask for a little help as those levels of sleep deprivation were destroying me.

Over the last 2 or 3 years I've had intermittent daycare services; intermittent because the local council closed down one of its higher dependency daycare facilities to save money and it proved to be a real struggle getting him into the other. ATM I get 3 days daycare a week, although this is not as much help as many people think because its a lot of effort getting my father ready and they now bring him back when they can't cope. Still he does enjoy seeing other people which makes it worthwhile.

Most recently his social worker has arranged six days respite every seventh week. Now that really helps, in fact he's in respite now until Thursday, when I pick him and his mattress up. Respite flies by, largely because I sleep the first 3 days. I then have one day to myself before spending the rest of my time catching up on washing and housework (which often swamps me).

Hi Dave

You should send your first post to 10 Downing Street. It may have the same effect on those there as it did me here.

Don't be lonely because now you have reached out to the carers here and most of them are lovely people like yourself. They will support you ..I know this .

Feel very proud of what you have done Dave.

If ever you need to vent or let off steam, you can message me any time .

Hi Dave and welcome,

Until I joined this forum, I didn't realise lots of other carers were also often lonely and isolated like me.

I hope the forum helps a little,