new to carers uk

[sandra_1507123]

Hi my name is Sandra I am new to this site and would like to chat and share experiences with others in their caring roles. I care for my husband who was diagnosed with PPMS in 2001 and he is now bedridden as his condition has been chronic for quite a number of years. If anyone cares to chat about anything I am always ready to listen and share experiences.

[Susan_160712345]

Hi Sandra and welcome to the forum everyone is so helpful and always willing to give any type of advise so beneficial lovely people joining the forum has been a godsend to me Take care x

[Pet66]

Hello Sandra and welcome.
My husband is in a nursing home. Has been for several months now. Suffered strokes and has vascular dementia. Life is very very different for me and adjusting is slow and hard. I am getting there though. Have to.
The forum has helped me enormously. I'm sure you will find it a help too. Lots of different circumstances, age ranges etc, but all know the difficulties caring can bring.

[sandra_1507123]

thanks ladies for such a quick and pleasant reply. I've got to the point now where I need someone to talk things through with or else I'm gonna crack up ha ha..... I feel totally alienated from life, I do get the very occasional respite breaks but that is an ongoing battle with my husband as he really doesn't like going. I have given in to him in the past but now feel for my own sanity I need to be firm and start having some kind of a life for myself hence the reason for joining this group, I think maybe just having someone to talk to and listen to me would make a huge difference. I am by nature a very happy go lucky lady but that seems to be disappearing bit by bit, I have a good caring family 2 sons who are settled with their partners and children and 3 absolutely amazing grandchildren whom I love to bits. I've had thoughts of running away from it all at times which of course isn't possible, has anyone else had these thoughts? if so would love to chat about it. San

[Pet66]

Oh yes! I've wanted to run and run. The feeling hasn't lasted long though. I too have a lovely family and grandchildren who are amazing. If we ran, it would bring even more anxiety's to them all. We wouldn't have any peace of mind if we ran!
I am learning to consider myself a little more. I meet a friend once a month for brunch and a girlie mooch. We been to Stratford,Leamington and Worcester as well for the day. The plan next is to do a day trip a little further. I feel less guilty than I did to start with. Recharges my batteries and am better for it. Would one of your son's or family member keep your husband company while you meet up with a friend for a cuppa and chat? I must admit one of my daughter's will visit hubby if I'm having a respite day, if they can. I feel better if that happens, but if for some reason it doesn't, I'm learning to accept. They are very regular visitors to him anyway.
You are important too, and what has sadly happened to your husband isn't your fault. Nor his, I understand. I often ask myself what would happen if roles were reversed. Think I know the answer. Hubby would be devastated I 100% know. But, he would go to his local for a pint with mates, I'm certain.

[sandra_1507123]

Hi Pet, yes I do get some help from my sons and they quite often say thay will sit with dad while I have some respite time, I know its my own fault but I tend not to take them up on their offer as I felt its not their problem they have their own lives and own problems as we all do, but as I said previously, I have now decided to take as much respite as I can and asked them each to sit with their day one day each per week when its convenient, one son is working the other is disabled himself he can get out and about to a certain extent and both are very caring sons and supportive which I am grateful for. So.... the plan is to take myself off somewhere on these days and stay out as long as poss ha ha. Also I have a good friend who I meet up with from time to time She has been a godsend to me and on rare occasions we have the odd weekend away. I know it sounds like I am ungrateful but I'm not I do appreciate some carers have a harder time but It still doesn't make me feel any better! I am 62 now and for the last 17 years I have been a full time carer which as you know is hard! and sometimes feel my life is not my own!. I am sometimes resentful of the way my life has turned out and feel that at 62 I should be enjoying life! Sorry for the long rant ha ha but needed to get things off my chest. San

[sandra_1507123]

Have to log off now but will read any messages I get on my return. Thanks for listening!!! San

[Miss Bee]

Hi Sandra, I'm also new - very different circumstances to you, but also feeling at the end of my tether with things. Hope we can find some people to chat and give us some advice/support and also help others a bit.
M. X

[sandra_1507123]

Hi miss bee
Thanks for commenting on my post I'm happy to chat with you if you like? if you'd like to talk about things just reply when your able. San

[Susan_160712345]

Hi Sandra me too as pet66 says just run and run but don't but that don't make us awful people it just makes you human i was exactly the same about not asking my son 27 or daughter 30( who has my beautiful little grand-daughter 6)for any respite time because like you i felt quilt that there lives should not be overtaken by this but i have now come to the realisation after talks with my lovely lady from the Dementia Society that my life matters also at 51 i need to live it also (My hubby just been diagnosed with Lewy Body Dementia at 57)so now yes i do ask them on days to watch dad and yes sometimes i do say won't belong but actually do spend that extra half hour but don't push it mind you and they never refuse I always get other family saying if you need anything just ask I won't ask as i would prefer them to say look i am going to take hubby out for the day just me and him mind you then that will give you time out for yourself that would be ideal and then i would take them up on this offer we must stop feeling quilt because as pet66 said about her hubby mine would have been exactly the same going for that pint or two with friends i am glad you are enjoying being on the forum Take Care x