Carer Burnout?

Caring for someone with MS
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I have a good life, lucky me! and yet somehow recently I’m fed up most of the time. This is not like me, I’m known to be the life and soul of the party…

I care for my wife (she doesn’t need that much personal help) and I do all of the domestic stuff like cooking and cleaning. I don’t have a problem doing it day to day but when I think about having to do it forever and it just getting harder and harder as her ms gets worse it really gets me down. On top of that the emotional strain is becoming unbearable as her ms has gotten in the way of our intimacy and created a distance between us. I feel unloved and I’m so confused that I’ve even considering taking a lover, great idea idiot boy, like that’s not going to make things more complicated ffs!

All I know for sure is that something needs to change.

I Love her, and I feel like a failure/idiot/arsehole just for posting this here. What have I got to complain about? etc. so please be kind to me, “pulling myself together” is great advice, but how?

Someone has suggested that I might have “carer burnout”. Can anyone point me at a good source of information about this condition and how to deal with it please?

Thank you in advance.

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Toilet break at work so excuse the short reply but I’m going to predict that not a single person on here would consider you an idiot for having the thoughts that you do! Life’s a big pile of crap sometimes but you’re cracking on and doing your best. Sure others will reply…

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Thank you Cherry tree. “A big pile of crap” is what it feels like right now.

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What you’re experiencing would be considered completely normal and understandable in the circumstances - caring for someone can feel like a non-stop treadmill and requires a level of selflessness that means you are constantly giving but get very little respite. I can’t point you in the direction of anything specific, but I’ve had a couple of colleagues who mentioned they were experiencing compassion fatigue - essentially their desire to help had gradually become outweighed by the burden they felt. It might be worth looking into it in case there are any tips on how to manage it and how to find ways to prioritise your own wellbeing despite the responsibilities placed upon you :slight_smile:

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There might be carer support groups in your area? Does your wife have an MS Nurse? If so maybe you could speak to him/her about how you are feeling.

I can identify to a point as have a 20 year old son who is Autistic - and as much as I love and care for him I have often felt overwhelmed by the bigger picture, if not by the day to day stuff. And then feel vile for feeling that way.

I think your feelings are very natural and it takes courage to acknowledge them openly. Of course it’s crap that your intimacy and dynamics of your marriage are affected - I have been having bladder and other issues and feel about as attractive as a bag of mouldy spuds, my poor husband has also suffered lack of intimacy because of this - and I’ve even jokingly suggested he gets a ‘friend with benefits’!!! On one level I would totally understand, on another I would feel heartbroken of course!

I’m sure you are loved…but from a “wife” perspective, I can say that I find it hard enough to love myself, never mind believing that anyone else could love me - maybe your wife feels the same. I also feel guilty for feeling unable to be intimate.

It’s very hard for you, as it is for anyone whose true love morphs into their ‘patient’ - I hope you find a way to find some peace with your situation and move forward

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Firstly well done for having the courage to post your post, don’t bottle things up, trust me you’ll reach a stage where you can’t even talk about it or ask for help if you bottle it up too much. No one on here thinks bad about anything people post, we’re just all trying to help each other get through this crap that life has dealt us.

I let my husband take a lover as I could no longer be intimate with him, but it didn’t work. I got too jealous. He’d not come home a night and I’d be lying in bed crying my heart out. That was about 15 years ago, we’re still together, he’s just learnt to life with things the way they are and he’ll never know how much I love him for it. Guess I should really get him to tell you how he feels. Do you have a hobby or just some “me” time. You need time to your self, just to be you.

Good luck, your not alone, not that that keeps you warm at night but hugs from me.

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You’re neither a failure, nor an idiot.

Your post is about the lack of intimacy and your own future being scarily taken over. A perfectly understandable fear of the unknown. There are several treatments to help RRMS, which slows down the disease.

Your wife is currently mobile and needs no personal care, but it seems her body is incapable of intimate response, possibly due to nerve damage within her spinal cord. There is a great deal of info and counselling about relationships and sex. The future is a scary place for both the Cared For and the Carer.

You’ll find help & support from the MS.Society, look at the home page for contact details. Other he!p is via a Social worker who will begin a plan with you and your wife. The plan entails a ‘team’ of different services, all of which can help you both. Phone your local Social Services offices, take a note of names & dates of all calls. Other help & support is via the MS Nurse.

Your wife will definitely feel full of guilt if she needs you. She’ll be terrified of what’s to come (if anything is). Her love for you will remain steadfast, but her guilt at not being physically able to be intimate will bear heavily on her. Dependent upon her treatment, the physical may improve. For a woman, sex is emotional but for a man with medium-high libido, it’s a physical need.

Harsh but true:- a lot of husbands leave their wife when MS turns up. If you are happily in love with your wife & just need physical satisfaction, then there are legal escorts prepared to help out. Do not consider any potential emotional contact, strictly business.

Could a residential nursing home be considered by and for your wife? Either temporary respite or full time care? Social Services will advise.

After digesting all info available to you, then the two of you can conclude the best way forward for you both.

To stay with your wife because you think you should is being a martyr. This is your life too and you should do as you feel is the best solution. Not a great place to be in, but I admire your honesty. Many carers feel the same but don’t want to look like the bad person.

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Why would she need a nursing home if she’s mobile and self caring?

anyone caring for someone is entitled to a needs assessment and will be offered advice and ‘respite’ through carers or PA’s that can provide a few hours respite a week so the Carer can go out etc or have help with domestic chores as per Anonymous.

Many of us women would happily enjoy the physical side too without any emotional involvement btw.

In your case you could ask for couple counselling through your assessment of needs which might worth a go before you make any decisions on how to manage the situation.

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Thank you LucyAnnie, Your message had a big effect on me and my thought processes, sorry it’s taken so long to reply.

I didn’t take a lover in the end because I’ve come to realise that it’s not really what I really want, I came to the conclusion that I am in mourning for what we had and no-one could replace what I had with her.

We discussed splitting up, and on the premise of that was where we are heading we both made efforts to be kind to each other and do you know what, things started to improve no end and now it looks like we will probably be ok.

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Thank you, I will look into getting a need assessment.

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Your post is very honest and made me smile even though I dont think that was your intent (you are not an idiot boy). I love my husband so much but gosh I miss what our life used to be and we all have moments of what could have been, should have been. I have only just joined this forum but it really does help to know that other people out there are dealing with MS and the impact it has on our relationships.

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I’m in the same boat…Thought it was just me …I still don’t have an answer. It’s the loss and abandonment I feel that is the hardest to cope with…

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Dear Anonymous’s.

this forum should serve you well because there are so many brilliant advisors.

In no particular order…communication is massively important. My partner and I talk enough to find other sexy ways!

Finding space on your own and finding ‘selfish interests and selfish times…my man takes a newspaper to the pub!

Tell your GP. They have a duty of care for your whole household and can put you on the waiting list for counselling. Get counselled together too.

Find others in the same situation? Phone all of your local services/charities etc.

de clutter the house, de clutter the wardrobe and buy some dumbbells. Lift weights together and get fitter. My weights are pathetically small compared to his!

Find one thing each day that makes you laugh or feel good, no matter how small.

warmest thoughts Ali

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Oh Ali, what a lovely post. I’m the one with ms and my husband is my carer. A good few years before my diagnosis, his libido just dropped off the radar. Gone. Nothing. Zero. This resulted in him physically distancing himself from me. Waiting until I was asleep before coming to bed, getting undressed in the dark, avoiding any physical contact never mind intimacy. The knock on effect on my confidence and emotions was huge. We’d always had great,passionate, fun times together so this was unbelievable for me! I was obviously frustrated, feeling unloved, un womanly. I became irritable, bitter and having to restrain my sarcasm towards him in public. Of course none of this was conducive to a loving relationship. He agreed to counselling, both as a couple and separately. He had every medical investigation possible,eventually having to conclude that this is how things are now. Strangely though, when we are away from the daily grind on holiday, things revert to normal. I try to book a lot of holidays!!! However, as my disability progresses and I’m no longer as “flexible and energetic” as I was, things are different. They have to be. Sometimes I feel a little embarrassed when things are difficult for me to manage, physically, but we never stop talking and humour helps. Bottom line, light discussion with humour if possible, but reach an outcome , not an argument. I wish you the best of luck.

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I urge you to make contact with the local carers centre, TRY https://carers.org/

there are carers support groups and respite and financial help - you sound like you need help with all of the above. Your kids would be able to go to Young Carers club, where they can meet other in the same boat and offload in a safe situation.

You don’t have to manage alone - there is help out there.

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I’ve become a carer for my partner 18 months ago. I met her through choice already having MS. Yes things are hard work. We over come a lot of barriers, physicaly and mentally. We go out socialising, shopping, holidaying in our touring caravan.

I get so tired some days. I have a 100 mile round trip to work and back everyday. Most days in the week i get to sit down for maybe 1/2 hour each evening.

What worries me is although were coping quiet well at the moment. Whats going to happen when we get older or if I did suddenly get carers burnout?