Caring

It's called love and you seem to give plenty of it

Not selfish at all. Three hours is so much better then two. By the time you get somewhere, you have to go back, if only two hours, also it takes time to relax. Is there a Crossroads Care near you. They can help with a “sitter” who will let you have a morning or afternoon off. depending on your DH’s health problem you might approach the associated charity for advice on help. Perhaps also think about more outings but shorter, for example a quick swim, a Pilates class, the library or just a quiet coffee nearby with a good book.

I get it! You are being unselfish in caring, but you do need to look after your own needs and find ways of going to the exhibitions etc. Can you get some more care organised so you have at least a day off each week? It will also give you new things to talk about with your husband. My mother looked after my father in a similar situation and it meant that she missed out greatly and might have contributed to her own wellbeing becoming compromised longer term. I am trying to make space for myself as I look after her one week and my grandchild the next. Interviewing care agencies is on my agenda! I hope that you can find a way to take the time for yourself that you need to stay well and enjoy life more than you are at present.

Do you have a respite charity in your area? If you're in the UK there's charity called Crossroads who will arrange for you to have a few hours help a week so that you can go out. I used to work for them and most of our employees were ex nurses. You can be referred by your doctor or another medical professional..

Can afford to pay someone to come in now and again?

this feeling of missing out on my retirement. - I know exactly what you mean! It is a massive guilt trip as I know that OH is missing out on it even more! - but that does not mean you are not allowed to have a life.

Google Crossroads Care and see if you can find the branch for your area. They provide me with 9 hours free care per month financed via the Parkinsons UK organisation. Other than that I pay others to look after him. Our savings are like a running tap!

I worked for Crossroads, for 6 years...........I used to look after people whilst their carer (spouse, relative) had a break of anything between 2 hours and a whole weekend.

I'm feeling the same. My DH is fine in the daytime but confused in the evenings. My me time used to be a few days away with a girlfriend in a beach hut. I don't like to leave him overnight so those days are gone. I feel selfish for missing them. Not very helpful but you are not alone.

Pay for someone to give you respite. You need to look after yourself too

You deserve some time to yourself, caring for someone is exhausting mentally and physically. Have you been in touch with your local Carers group - they often have other support groups that will help with many different things.

www.carersuk.org/help-and-advice/get-support/local-support

Do you have a wheelchair for DH? He must want to get out too. Some gardens have wheelchair access. If he were mobile would he too go to the exhibition?

Years ago I was a driver of a vehicle that collected older people including a couple in wheelchairs (it had a ramp) and took them to a day centre once a week. . Is there anything like that for your DH where you could leave him for several hours or a day?

It would be good if you could organise a whole day off for yourself, even once a fortnight if not weekly. You may be in for the long haul so need to find a way to cope and keep yourself physically and mentally well.

I am the helpless one of our marriage. Health issues, osteo arthritis, and now 3 bulging discs mean I can barely walk and my 78 year old hubby, bless him, is doing most things. Luckily he is fit, but I am a great burden. He is into model railways and belongs to a club, which I absolutely insist he attends each Tuesday, with no time limit on returning home. We have mobile phones so I can call him if I need him, but on bad days I just rest on my bed and read until he gets home. It's the only freedom he has from my woes and he richly deserves time off. You need to do something similar, according to your interests. Find a carer, and book their time for any event you especially want to go to, or on a regular weekly basis,or you will resent him more and more, and he will know and feel it. You must have a break, to enjoy your retirement as much as you can.

My husband didn't live until retirement. He passed last year unexpectedly at 60.

I would rather have him here and not doing the things we always did than where he is now.

I'm just giving the other side of it. I know all is relative.

You have to make time for you. My husband wasn't a well man even though his passing wasn't unexpected.

I did make time for me. He wanted me too. Who cares for the carer comes into this and is very important

Can you get in touch with age.uk to see how they can help too? They have a lot of support and services available

Nope, you're not selfish at all. You won't be any good to anyone if you don't look after you. Great advise given too.
I send you and you DH hugs.

Do you get Attendance Allowance and Council Tax Reduction ? This could help pay for someone to sit with your husband.
Carers support also have carers grant which is up to £300 once a year for the carer to pursue their own interests.
All good advice to speak to Age Uk and Carers Support.

It is such a strange and troubling position to be in. Someone said to me "At least you still have him" - which set me thinking. Of course I am pleased he did not die when he was so ill; but I cannot help looking at his quality of life - it is frankly dire. He is moved from bed to riser/recliner chair, he has a conveen catheter which is always falling off, toileting for bowels is difficult and miserable, he sleeps most of the time, there is nothing he enjoys, he is anxious all the time, he has no freedom of movement and is very frustrated, he cannot concentrate to play scrabble or cards or read a book etc. etc. Whilst I did not want him to die, neither did I want this for him - it is 24 hour misery for him and he can see (some of the time) how stressful it is for me, both physically and emotionally.

Why would I want him locked in this life of misery?

I do feel for you, and like other posters, encourage you to contact any organisations that might help, but failing that, pay for some additional support so you can get out for longer on a regular basis.
I'm 7 years into full-time caring for my DH, who has Alzheimer's, and if I hadn't started organising time for myself last year, I would be a prisoner at home as DH finds it stressful to go out to things we enjoyed through our 28 years together and is content to sit in his chair with the cat, dozing and reading. The guilt of enjoying solo holidays and outings with friends never goes but I try to manage it as the alternative - at 77 - might be me getting ill and my husband having to go into a nursing home. If you need further encouragement, other than gnetters, read The Selfish Pigs Guide To Caring, which is humorous and helpful.

Hi Sue421....just how long have you been caring for your disable husband... it sounds like a long time. I’m not being nosey, it’s just that I’m in the same way, and I’m mightily crazed with it all. He won’t accept anyone else to help him especially ‘carers’ . Won’t have them in the house even. I’m at the end of my tether .... been doing it now for 23 years and don’t see an end in sight. When I see my doctor for my usual medication review ...he always says how wonderful a job I’ve done with my other half...and they didn’t expect him to still be here!! They say it all as if my life doesn’t matter, my health suffers, my kids have suffered, my much sought after retirement is ruined. 23 years of it ....if you Sue can do anything to alleviate your negative feelings/life do it! My life as a wife/ life partner/ companion ended when I was 46...I’m now 69! Do something to recapture your life before the lid shuts too tight. Good luck .

Not selfish at all! Caring is exhausting and we all need to recharge when we can, and of course we miss the things we can't do anymore. xx

Not at all. If you are going to continue to look after your husband then you need to look after you too. Have you a Carer's organisation near you? We have one in Bath and North East Somerset and they organise loads of events for carers and can also provide someone to sit with the carer whilst you are out as me time is so important.

Just saw your post lucky girl ....not living up to that name are you?

Sorry I meant sit with the person you care for. There are also events that both carer and caree can go to.

To Lucky Girl - I hope you have family/friends/neighbours so that you don't feel totally isolated. I feel for you and hope that you have at least a small garden as pottering outside can be very therapeutic. My husband is 79 and in relatively good health. Your posts have made me count my blessings. Sorry, this doesn't help you at all but has given me a wake up call.

Why is your husband's mobility poor? How old is he? Have you considered a mobility scooter so you CAN go out together?