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First post - Carers UK Forum

First post

Tell us a bit about yourself here.
Hi
I am new to the forum and this is my first post.
I care for my Mum who was diagnosed with vascular dementia last year. I have no partner, children or siblings and no nearby relatives. I decided to join to make contact with others in a similar position for a general chat or when things get tough.
I'm not looking for advice, I am involved in a local dementia group and Mum goes to day care with them one day a week and our local Carers group are fantastic, very supportive and understanding.
I just wanted to make contact with others in a similar position as friends don't really understand.
:)
Hi JM and welcome. I care for my 99 and a half (very important to her, that half) year old Mum who is suffering from some kind of mild dementia, but not diagnosed as for most of the time she's very sharp. Some of her 'forgetfulness' is because she can't be bothered to remember and some because she's tired. Quite a lot of her difficulties are due to her increasing sight loss.
I don't have any siblings either and my nearest child is full on busy with family and career. Does turn up in an emergency though. My husband helps where he can and I have an excellent care company on board to help. However I'm still 'caring' for most of the day and I do struggle with the tying, tiring and endless commitment. Do join in and share!
Elaine
Thanks Elaine
Hi JM
I guess i'm in a similar position caring for Dad who was diagnosed with Vascular Dementia last year although I think he' d had it for some time before diagnosis.
Dad is 89 and I'm his main carer but like Elaine I have a morning visit of outside help to lighten the load.
I don't have any immediate family either and no one else actively involved in the care side of things.
I'm very positive but I've had a very wearing weak so far as every time Dad opens his mouth it is to grumble about something . He is not a happy bunny at all and saves his moments of light for my brother's infrequent visits and the district nurses. I am just getting a torrent of verbal earache. Hey ho.
Hi JM, welcome to the forum. Good to hear that you have support. Just checking that you know that mum is entitled to Attendance Allowance, and is exempt from Council Tax, as she has "severe mental impairment"? So many people are not aware of this that I now routinely mention it to all newcomers supporting someone with dementia.
Thanks for the replies Henrretta and Bowlingbun

Henrietta
I try and be upbeat and think how horrible it is for Mum but sometimes I feel as if my life is passing me by. I finished work in 2012 and planned to take lots of holidays but the reality has been so different. If I have a little moan I get loads of 'advice' as to what I should and shouldn't do and that stops me mentioning anything and why this forum seems a good idea :)

Bowlingbun
Thanks for those tips, yes we have Attendance Allowance, Carers Allowance and reduced council tax thanks. Both the Carers group and the Dementia support told me about them when I first contacted them. As I am on my own caring they also mentioned an organisation called Crossroads who would step in to get things sorted if anything happened to me. I have not contacted them yet.

Hope you both have a good day - it's lovely and sunny here
Hi - you say you've got the caring set up up for your mum pretty much sorted, which is great. :)

However, you don't mention holidays for yourself other than to say you wanted to have lots but can't now. :(

So, do you take any at all? And if you don't, is it for reasons of financial constraint, or because you are reluctant to opt for respite care for your mum while you take them?

I hear what you're saying about not wanting any 'advice' - because the situation is as it is and that's that! - but that can sometimes be because one simply 'gives up' on one's own life, and decides to 'wait it out' for it to 'restart' when your mum no longer needs your care, due to natural mortality. 'Resignation' may be regarded as some kind of virtue (!) (and it is, no doubt about that!), but it can take a severe toll psychologically on us.

'Acceptance' can sometimes be 'resignation' in disguise.....

That said, I'm not trying to stir up a hornet's nest of resentment and frustration in you (!!!!!), and I would be the first to say that if my caree were my own mum, and not my MIL (I'm widowed, so I get 'sole care' of her), I'd be significantly more enthusiastic. (I 'solved the problem' by putting her in a care home for dementia. Brutal of me, but it was 'her or me' and I 'chose me'. The guilt never really goes, but there you are.)

Wishing you well, and definitely nice to read of someone who seems to have elder-caring nailed. :)
Just wanted to add, on a more upbeat note (and I do appreciate it's very easy for this entire forum to become pretty 'doom and gloom' - usually for good reasons alas!)(which is why it's nice to hear of someone like yourself who is 'coping well'), that I have a friend who has, like you, willingly taken on her dad with dementia, and he lives with her.

It's 'not too bad' overall, but the biggest stress has been, for her, the 'always on duty' aspects of care, which has really hit her when it comes to not being able to take any breaks away (she's an empty nester now, and divorced). So what she tried out, and it worked very well, was hiring a live-in-carer for a week, while she had a holiday. Yes, it cost, but no more than respite care in a home would have been (she checked out the - very luxurious! - care home in our town, but it was too large and impersonal, as well as expensive). It meant her dad simply went on 'pottering around' the house the way he likes to do (snoozing, watching TV, turning all the switches on and off the whole time :) )but instead of my friend being 'on duty' for him, a care-worker was.

She's done that several more times now, including recently when she managed to get a quick citybreak away with another friend. It's her 'recharge' time, and has significantly 'lightened the load' for her. (Her dad used to go to stay with her sister, but her sister has pulled out of contributing any care at all now, and would prefer their dad to be in a home.)

Anyway, just a thought, if your finances run to it (it does rather double the cost of a holiday alas!), but it does 'open the door' for a bit of 'running away' time for oneself!
Thanks Jenni
I'm glad I seem to be in 'coping well' because sometimes I really feel that I'm not. There are various reasons why I have not taken a holiday and though a large part is due to my caring role and I do at times think 'why me', I don't feel resentful or feel I'm being virtuous and I know that a burnt out carer is no use. I hope before I reached that stage I would do something about it.
I think we have all got to do what we feel will be the best for the person we are caring for and best for us.
I just miss having someone close to share with which is why I joined the forum.
I think your suggestion of having a live in carer sounds great and not something I had considered so thanks for that.
I think the advice on the forum is great and can really help :D
I've just sent you a PM, private message. To find it, go to the purple tab bar, third from the left you should see "1 new message".