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From lover to carer.

I am feeling very sad at the moment and wonder if anyone else has been through what I’m going through.

I’m 54 and was diagnosed with PP MS nearly 34 years ago. I’d been married a couple of years when it struck and in a wheelchair within a few years. Hubby never really coped well with my disability but we muddled along for nearly thirty years until I began to need some personal care and he didn’t feel comfortable. 10 years ago I met, and then moved in with, another man who cared for me in every way, not phased by any aspect of my personal care. We had a great social and sex life together for years until my condition worsened and he began to struggle with moving my stiff legs. About a year ago the sex stopped and although I carried on trying to initiate it never happened again.

I’m now told that instead of us being ‘in a relationship’ he thinks of himself predominantly as my carer and we’re simply friends and companions. We have so much in common and he wants us to carry on living together with which I suppose I should be grateful. Maybe one day I will feel so but at the moment I’m heartbroken and scared. Scared that his needs will lead him to another woman and with that I do not know how I’ll cope.

Sorry to sound so maudlin but thanks for reading my wallowing.

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What can i say…I feel your sadness, I personally would feel heartbroken. We are humans first with all the desires to be loved and needed and whatever our disability throws at us we still are us with all those feelings. I have been married for quite a few years and we’ve both aged and sometimes i gulp in disbelief at the fact that i am now in a wheelchair I feel for my husband … but i truly belive that if someone loves you they will stick with you, “for better or worse, in sickness or in health” as they say. I hope this man stops and thinks about what he’s saying to you, perhaps he’s going through a bad patch himself and if so I hope that he gets some help.

Michelle x

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Hi, I feel for you so much, me and my husband are still lovers but that’s been a battle. I’m not in a chair yet but know that’s where I’m heading

I’ve lost my ‘slink’ (as in I won’t turn heads sliding along in stiletto’s again), I actually struggle to get flat shoes on my right foot at all! My point is that we all lose our old-selves with this wretched disease and it’s bloody hard enough to accept our losses, even harder to watch what it does to those around us. My worse fear is that he’ll eventually leave me. Obviously, teaching pole dance stopped but I’ve been fighting with my sexuality since. In the 3yrs since diagnosis, we still havn’t gotten back to place I could call normal. If I manage a whole month without tears it’d be a start…attempting to retire now. Oops sorry, starting to ramble -seriously tho, I know I probably sound bitter but I am, MS steals so much.

If you want to talk, message me if you want to.

Sonia x

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Hi Trellis and welcome to the forum, don’t think I’ve seen you here before but I’m often wrong!! I see what you’re describing happening to my mum and dad. They’ve been together 50 years and have had a very strong, loving relationship, holding hands when out together, cuddling on the sofa etc until about a year ago when dad became very disabled with MND. She now provides all his care, he can do almost nothing for himself, and she has become his nurse/carer rather than his wife.

It’s heart breaking to see, even though they laugh together a lot but she doesn’t feel like she’s his wife any more. They’re not concerned with the lack of a sex life but their intimacy is over. Dad needs a hospital bed and his riser recliner so they don’t even get to cuddle any more which they both miss.

All I can suggest is what we’re trying to organise for them - a care package for dad, so their time together is quality time rather than care time, she can feel like his wife again. I realise their situation is possibly different as you may share a bed/sofa, and if you’re able to please enjoy this time together, make the most of any intimate time. Do you think he feels different towards you physically? Could counselling be an option? Can you talk to him about how you feel?

Don’t just leave it please, seeing my parents is very sad, it’s awful to think there are probably many couples who feel like you do but are too shy to talk about it. I wish you well.

Cath x

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Hi Trellis

I feel your sadness, perhaps counselling would help both of you, even if it is only a tool to help to talk about things.

Like you, my hubby has been my carer for a long time, we have been married 44 years, and still enjoy having a cuddle and holding hands, but that’s about it. MS is a real cruel disease, and, unfortunately, only people with it truly understand all the different symptoms it throws at you. This forum is a godsend, because we all do understand, which helps enormously.

Interesting to see you had ppms so early on, I thought I must be the only one, as most people in this category are older when diagnosed, we must be the exeption to the rule lol

I’m not sure I have seen you here before, so welcome to the forum, and if you’re not a ‘newbie’ here, please ignore my welcome, b****y brain fog, I struggle to retain things sometimes.

Pam x

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Morning Trellis, well where to start.

First off, BEFORE I got really sick and i was working i was in my late forties, and with my present partner. I love him very much, but sadly he has COPD and is now in last stages of it at 70. Our sex life started to deminish as he found it harder to actually breath and it was him who withdrew sexually not me, because it was too much for him.

10 years ago my sex drive did a nose dive, so really we have lived a celibate life together. We have a wonderful relationship, i still find pleasure errr now when i need too for myself, but if i pushed him, he would pass away bless. I decided that in my lifetime i had enough sexual relationships to keep me going if that makes sense. I decided that just being with someone even as a companionship was worth it. If something happens to him now i would never bother with another man no thanks.

I think your partner has his own issues, and perhaps using you as an excuse. There is more then one way to skin a cat one doesnt have to lead a traditional sex life, there are other ways to enjoy each other without having to negotiate stiff legs.

I know lots of older people late fifties, early sixties who dont have sex any more with their husbands and quite a few who sleep seperate (me being one of them). My best friend is 62 and her husband a once healthy man got meningitis 2 years ago and their sex life did a nose dive, but they still happy together she just takes what she can, as she loves him.

So what to suggest. Lets not jump the gun yet and see your future without him and coping on your own, lets find a way that you can enjoy each other again without him being your carer.

There are care packages out there to help you. I have Direct Payments and before diagnosis I got 10 hours care. It doesnt sound a lot but it does cover me having a shower in the morning and doing more personal things for me.

So can you get care package? To start you ring your Adult Social services team and explain and they will send someone to do you an assessment.

IF you can afford too, can you get a carer in for a few hours a week, to take the load off him. Sometimes we do forget that we are still human and need to go out and do normal things. When was the last time you both went out to the cinema, or restaurant or even on a holiday. Its easy to get wrapped up in PPMS, and wheelchairs.

Are there times you can get out of the wheelchair, or are you permanently disabled? Have you been reassed by a specialist physio? I used to teach a lady with MS before i got sick, and she was in a wheelchair about your age i suppose, and we talked a lot but she was out learning how to use her computer, and started to google and found out about oxygen therepy and weirdly enough there is a centre not far from us, so off she went hubby in tow, and started it, and six months later she was walking again, stiffly but with aid. Sometimes we just get so used to our body we forget it can be challenged too.

So I would look first to find a way that he doesnt have to be your carer quite so much, give him a break, and also i think you two should go off somewhere and just chill together and enjoy each others company.

There are no guarantees in this life, and illness can strike any of us. I have 3 friends, who have all just lost their hubbies, one was only 38, the other 54, and the other one 62 scaringly enough by sudden death heart attacks eeek.

So what i am saying is enjoy what you have you still have a good relationship, and you could be sneeky and instigate sex but then perhaps he has gone off it anyway, and the arrangement is just suiting him anyway lol.

I love my life with my hubby, even though its celibate, we still cuddle and kiss, but we have a comfortable relationship, and sadly i suppose he is in the grand scheme of things a lot iller then I am, so i treasure every moment we have together. xxx

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