Feeling Helpless and lost

Hi, I am wondering how people manage to look after the person they love when you see them slipping away day by day.
My wife has been bedbound for a couple of years and has had dementia for a while longer.
I am her main carer, I work (down to 30 hours now) and have carers in then.
I am on leave this week and have spent more time than usual with my beautiful wife. We used to run a pub together and have had some great times, we have always been in love and married 26 years now.
I have been in tears today just thinking about how her life is now, I am 56 and usually mask my emotions, even to myself I think!
Her day is spent watching tele, we manage to get out to an activities session once a week but that is usually it. I have tried other things but she will fall asleep or her bottom will ache if she is in her wheelchair for more than a couple of hours.
I have a gantry hoist and will hoist her into her chair for 2-3 hours daily.
She says she is happy and does seem content, maybe it is me who needs to adjust but the idea of her getting worse and becoming more confused is just a scary and hear wrenching scenario.
I am being selfish but how do I cope?? What can I do??

I am 56 and usually mask my emotions, even to myself I think!

This can be counter productive it’s absolutely understandable you feel this way. You must allow yourself to have these emotions as all is normal. This is no rule book on how you should feel. It’s a personal unique position only you really know how you feel. What you do need help with is allowing yourself as you have here. To say freely how you feel without being judged.

You need to find a safe place where you can openly express your feelings and thoughts. Have you considered any counselling sessions and/or joining a carers group. Some carers groups offer short term sessions or as part of a carers assessment. Your G.P. could also help but you may find you wait a long time to be referred.

I am being selfish but how do I cope??

No you are not and you can cope with support.

I agree, I could do with having a chat with someone.
I just find it difficult although I realise I need to be well and positive to make my wife as happy as possible.
It’s not as though I am trying to “act” all tough and that I can manage, it’s just all I know.
I appreciate your help.

Counselling was life changing for me. You have nothing to lose, everything to gain.

You both have to be happy it’s a two way street. Separate to you possibly having counselling would your wife do a couple session.

I do think access to a carers group would be presently the most beneficial. I know it’s not for everyone but until you try you wont know. Carers group provide many outlets it’s not all talking. Some have male carers groups.

In my area, the carers in the carers groups were all much, much older than me, usually caring for a very elderly spouse. Absolutely nothing in common with me and my brain damaged son. Fortunately, the organiser was really supportive to me away from the group meetings. She retired a few years ago now and moved to Wales, where she grew up, but we still keep in touch. Just having one supportive person is so helpful.

Fantastic carers group in my area covering adult carers, young carers, parent carers, learning disabilities carers and former carers. including Men’s and single parent groups.

Welling being sessions counselling varies hobbies etc etc.

Thank you for your advice, it is greatly appreciated and given me the oomph I needed to ask for help.
I have joined a Facebook group called Mobilise and they managed to fit me in a half hour chat which took place yesterday.
It was really productive, (went on for nearly an hour) and I have a clearer idea of life and how to help myself which ib turn will aid my wife.
I am in awe of some of you here, the strength, compassion and positivity you have in crappy situations is truly awesome.

I will make time to come onto this forum more as I realise that talking (and typing) is a big help.

Thanks again


My husband and I met when I was 16, married at 19, we travelled the world together, and shared everything together.
After he died I was devastated of course, I so missed having someone to talk things over with.
The first few counselling sessions I had were basically me talking about myself, which at the time seemed pointless, but then I realised that after each session I felt a bit better.
I couldn’t change anyone else, but I could change myself and the way I thought about caring for son, mum and others.
Looking back, one of the most important things was the fact that I was perfectly entitled to time for some “self care”.
Apart from holidays, I live in jeans/shorts and polo shirts at home.
For me, “my” time involves having a home beautician every month, and a home hairdresser, with a facial for my birthday and before I go on holiday. I’m happy to be mistaken for being 10 years younger, thanks to their efforts.

I’m not suggesting this is appropriate for you, maybe you liked model trains, sky diving, potholing or… ?

It takes time, but if you can find some of the “old” you, it will give you strength to deal with the every day challenges of caring long term.
On the radio, when I was in my shed today, they mentioned a new book about caring for someone with dementia. It was called something like “I wish I’d known about dementia”.
There is also a book called “The Selfish Pig’s Guide to Caring” by Hugh Marriott, a lovely man who lived near me, and gave a talk I attended.
There is another book called something like “Contented Dementia”, also well regarded.

That sounds really positive!

I’ve put the link here as it may also help others.

I feel the same way.
Also very lonely most of the time.