To not have realised that this is what I signed up for?

[BogstandardBelle]

Between DH and I we have a lot of friends and family where one is becoming the carer for the other. eg.

DMIL has recently been diagnosed with Parkinson’s and osteoporosis. DFIL now has to do everything physical for her, and it’s not going to get Easier. She can no longer cook, wash herself, she can barely get up out of her chair. Mentally, she’s okay but physically she is severely restricted.

My uncle, who’s 76, has viral encephalitis and is goingto be left with major brain damage and personality changes as a result. My aunt is expected to bring him home and care for him - he’s not even himself anymore. The person she loved and married and lived with for 45+ years is essentially gone. Yet his body still needs fed, watered, kept clean and clothed.

My boss at work, late 60s, her husband has just been diagnosed with Parkinson’s and frontal lobe degeneration, so basically dementia. He’s still functioning, but it’s only a matter of time before he requires a lot more care.

I know it says in the marriage vows «in sickness and in health». Is this what it means? To end up being a carer? Dealing with toileting and feeding and aggression and... everything? I don’t know if I can do this.

I have early onset Parkinson’s diagnosed over 10 years ago. I’m also a widowed Mum so the carer/partner bit never applied to me but if I loved someone enough to marry them then caring and helping them would not be a problem to me. We are all one illness or accident away from disability.

My MIL put my FIL in a home when he needed care. She wanted to continue working and having a social life, and start dating again. So she basically threw him on the mercy of the local council and walked away. I think she visited once a fortnight.

I don't want to be a carer but neither do I want my DH to go in a home. I'll care for him if he needs me to, and I feel secure knowing he'll care for me if necessary too. That's what love and commitment is about. I'm also prepared to care for my parents if necessary. Nobody WANTS to be a carer. You just do what's necessary for the ones you love.

...and with aggression etc, often it’s necessary for people to be in a care home. That’s not anyone neglecting their duty, that’s keeping everyone safe.

To those saying they will go into a home, most people need care for years before they are ill enough to go into a home
This is so true. When my mother was in hospital, I heard an elderly lady begging for her husband to be discharged to a care home. However, he wasn't ill enough to fit the criteria, and they didn't have the funds to pay. That was a few years ago. I imagine it's worse now.

We are all faced with this prospect at the end of our lives - either caring for our partner or being cared for by him/her. The alternative is to spend the end of our lives in a Care Home. They are difficult choices. Everyone hopes for a short illness before they die but the reality these days for most people is a long slow decline over many years. There is a very good book called "Being Mortal: Illness, Medicine and What Matters in the End" by Atul Gawande. Everyone should read it.

I totally understand the people saying they would rather die than live as a burden to others and with a poor quality of life. My dh has a life limiting illness and his quality of life is poor (some days better than others). He would love euthanasia to be legal in the UK.

We are married and I am committed to caring for him, it is hard work sometimes, and a lot of what I do is unseen. The worst part is justifying myself to the DWP...

I don't agree that's what you sign up for. To be someone's carer, I'm older than my husband and I'd far prefer to go into residential care when the time comes.

Being there in sickness and health doesn't mean you have to be the other persons nurse. That's just martyrdom.

It is not always partners or children who are carers for their spouses /parents. I knew a woman in her 90's who was very fit and healthy but became a carer to her 60 year old son who had developed dementia. She looked after him for several years before she got him into a home, she died shortly afterwards. It was almost as if she kept going when he needed her, once she secured other care for him she felt she could let go herself. It was very sad.

My mil cares for her husband as well as working in her 70s! But she does have a care package twice a day because she sometimes struggles, she says she needs to work for her sanity as fil can be demanding! Although he can walk around the house!

I can't believe you've never once considered your mortality or health OP. Are you very young?

I remember once, having a row with DH and I said "Who'd you think would be wiping your bottom if you got decrepit in your old age? Your Mother?? Of course not. It would be ME!:"

And he realised then...that is what a life partner is. He'd do it for me and I'd do it for him. It's not nice to think of but it's about caring for the person you love.

My extremely fit husband suffered a brain haemorrhage and three strokes four years ago. For the first 4 months of his illness, I was literally helping the nurses wipe his bum and bathe him - although he became more mobile, the assistance was still needed, but that’s what I signed up for when I made those vows. He passed away in April and I’d give my right arm to have him back.

Try to look at it the other way round, if you were ill hopefully your DH would be looking after you. It might seem unfair but 'in sickness and in health' does mean just that.

It is miserable and depressing, especially when the illness is terminal and incurable. My dear late husband was diagnosed with motor neurone disease which knocked us for six. I became his carer - I'm sure my previous experience as a nurse helped. It was still effing miserable though. I was happy to help him to wash, dress, eat, etc but sad on his behalf - especially as we both knew that the only respite for him would be his early death.

Make the most of things while you still can as you never know what is lurking around the corner. If the worst does happen remember that there are many organisations that can help with practical things or just a shoulder to cry on. They will be your saviours if times get rough.

We are all faced with this prospect at the end of our lives - either caring for our partner or being cared for by him/her. The alternative is to spend the end of our lives in a Care Home

I think this view is too black and white. My mother went into a care home 18 months ago. Until then she was managed at home with visits from carers going up from 1 to 4 times over a period of around 15 years. Some of that time my DF was alive and also needed care.

In that time my sister and I also cared for my parents including where necessary personal care but mostly in helping them to organise things, arrange hospital appointments/transport/shopping/admin etc (almost a full time job at one time when DF and DM were both very ill/disabled at the same time)

My mother is now in a home and my sister has retired and lives near the home. She visits my mother around 4-5 times a week. I visit once a week (and I work full time and live nearly two hours drive away). I have been visiting once a week for more than 2 years (since she had the fall that preceeded her going into a home). I usually stay 3-4 hours and in that time do all her personal care rather than call the carers

My mother needs help transferring from bed to char to wheelchair, she needs help every morning getting washed and changed and in the evening getting ready for bed. She can do almost nothing for herself as he has trouble with her eyes, her ears and her hand have such bad arthritis she can't really grip anything. she has some dementia but is mostly all there and needs mental stimulation as well as personal care

I sometimes find the strain of full time work, having a teenager etc very hard to balance with spending almost every weekend visiting my mother. It takes an entire day of my weekend which leaves me with 1 day in 7 where I can do things for my family. Over time (and by that I mean years) this becomes very difficult but I love my mother want hr to be as happy as she can be with the very severe difficulties she faces

My sister and I spend a lot of time with her, playing cards, talking, taking her on day trips and yes also providing some care when we are there. However the majority of her personal care (particularly at night) is done by carers. In this environment my mother has thrived and is looking better than she has in years. She is getting very good physical care which leaves my sister and I time to give her emotional care. I would say she still has a good quality of life and still enjoys many things

Often being the only carer and trying to shoulder the whole responsibility for all personal care is not what is best for the person who needs help if the carer burns out. It can be a a marathon not a sprint and some pacing is needed . However just putting someone in a home and visiting 2-3 times a month for a couple of hours is the other extreme. Just because some is in a care home does not mean their family have stopped caring for them.

BTW do NOT look to social services for help they do expect any adult in the house to help out, even my teenage kids.......yea right lol. Get some insurance if its concerning you this much.

:( this thought is so often lurking in the background for me. My DP is 15 years older than me.

I'll be giving up my career early to spend time with him in his retirement.

By my own retirement age, when I should be holidaying and relaxing and enjoying the rewards of decades of work, I'll be his carer.

I'm giving up the opportunity to have any nice holidays now, because I'm saving so hard to fund early retirement.

He out earns me significantly. But we're not married. Only DP. And he will never pay for me to take part in something. 50/50 is the only acceptable position to him. I'm missing a local festival this month because I can't afford it. He's going with his friends instead.

I know. I know what I should do.

It is very difficult and not everybody can cope with it. My DF had serious problems during a period of my mum's life with an illness nobody knew what was going on, he tried his best to be there for me (I was 12) but it was a severe strain on their marriage.

My mum had to make the painful decision to put my DF in a hospice years later when a brain tumor meant it was impossible to care for him at home for her.

After all this, she decided she wouldn't be a burden to anybody and luckily is able to have enough funds to pay for residential care. Knock on wood, she is a healthy woman but in a way it is liberating to know I won't be a carer for her (which would be a logistic nightmare anyway).

I had depression and a physical injury taking months to go back to normal. DH was a rock and helped every step on the way, more with mental than physical help but still equally exhausting and I am sure resenting it along the way as well.

Interesting discussion. I think these things must be reciprocal unless desired by both parties. TakeMe sounds like things are very mismatched between you guys I’m afraid like a previous poster in those circumstances I’d be ending the relationship. Not just for the potential caring side but for the fact it seems to be assumed all the sacrifices will be yours

Maybe not look at as you becoming a carer in later life, but your DH becoming a carer for you?

Is it realistic to look at some imaginary future (you may both live long and healthy lives) and withdraw from life because of it?

I personally won’t become a burden for anyone and if euthanasia isn’t legal by the time I need it I’m off to Switzerland

bumblingbovine49 I did not mean to sound reductive. That is why I recommended the book which is a discussion of a complex issue.

Please can those people who are saying they would rather die than be a burden to others, be considerate to the fact that some of us don’t have the choice!

I didn’t know that I was facing such severe disability when I married my DH and we had our dc! I may be a ‘burden’, my body may be weaker and unable to do many of the basic things that healthy people take for granted! But my life still has value! I am still a wife, a lover, a companion and best friend to my husband. I am still Mummy to my two beautiful children who adore and need me! Needing my dh to care for me doesn’t stop me from being me! I am still the same person, all be it my body needs care and support, but I am still happy, I am still in love, I still love, I can still find laughter in every day, enjoyment in my family and contentment in my relationships!

My life is WORTH living!!!!

You wouldn’t believe how many people think it’s ok to say

“I don’t know how you do it, in your situation I would kill myself”

It is incredibly hurtful to hear people say that they don’t value my life, that they would rather die than live my life.

I am not saying that anyone on this thread has said that about me specifically! I know this isn’t about me! But the fact remains that so many people think it’s ok to tell severely disabled people that their life is so awful that they would rather die than be in their position! That kind of statement could be the last nail in the coffin of a severely depressed, recently disabled person, who is already struggling to come to terms with their recent disability.

Please try to see the person- NOT the disability!

My dad had cancer a couple of years ago and my DM was brilliant. There were a number of complications which meant she had to carry out very intimate personal care for him.

In my mind I prayed my DH would be never be in that position....as I don't know how is cope.

I wouldn't leave...but I'd need to employ a carer. I'm caring as a person...but physical caring duties aren't something I'd find easy.

It's amazing what you can do when you have to Sandy.

@TakeMeToKernow
What would help you do what you need to do?