Hi, I have been married to my husband for 33 years, he is now secondary progressive M.S, wheelchair dependant with the use of his left hand only. I work full time in a demanding and very responsible job. He is catheterised and is constantly getting urine infections. This renders him totally incapacitated. He is bed bound with only the ability to move his head. Carers come (when he is well) to get him up and put him to bed. he also has P.A,s who come in for a few hours in the day to feed him lunch and make hi a drink. He can not feed himself anymore. I am the night carer, which involves numerous interruptions to my sleep to give him drinks sort out his catheter and move his limbs.
I am not sure how long I can carry on like this. I have to take annual leave from work (which is not easy) to care of him when he is 24 hour nursing care, which means that my rest time is used up nursing him. I am totally fed up. I feel so ashamed because at times I wish that he would just die so that the years of having to care for him would end. I know that his life is miserable but he does not seem to consider that mine is miserable also. He never tells me that he appreciate what I do for him. If things were reversed I know that he would not be able to do what i do, moreover I would not have let him. He seems to think that it is my job to work full time, clean, cook, feed him, garden, nurse him, get up in the night. I give myself two weeks in a year to get away walking with my dog, he resents my time away and i never tell him I am going until I have sorted his care and it is nearly time to go because he will sulk and I can feel his resentment.
I know that I sound selfish, I try not to be and also try to stand by my vow, ’ In sickness and in health’ but no one mentioned that the sickness could last years and years. It is frustrating that there is no prognosis. I feel it would be better had he had some sort of cancer, then I could be told ‘your husband has 6 months or a year to live’ I would be nicer and not so selfish if there was an end point.
Sorry for the rant, I do love him although it is not the love a wife usually has for a husband. I am not sure if there are any solutions to my problems but if anyone has any practical advice I would be very gratefully. Thank you.
I’m sorry, I have no magic solutions for you. But I want you to know that your feelings of resentment and of being taken for granted are perfectly normal and natural.
You need to somehow get a bit more time for you. It’s by no means selfish to wish your husband were no longer there. It must make life so bloody difficult for you.
I’ve often said that it’s horrible having MS, but it can be worse to be the partner of someone with MS. And to be honest, I know your husband must be frustrated as hell to be stuck in a completely failing body, but he is being very self centred and really doesn’t seem to appreciate you and all that you do for him.
Don’t apologise for the rant. Sometimes you need to let it all out. And who better to understand than us lot.
My husband does an awful lot for me. I’m not as badly disabled as your husband, I’m a wheelchair user, with crappy hands, a stoma and doing ISC to empty my bladder, but can walk a couple of metres with a walker, and do a lot of self care, so long as he’s available to pull up my trousers! He calls himself a ‘domestic goddess’ (he never did get the hang of masculine and feminine kinds of deity and I don’t want to stop him being a goddess!). He cleans (a bit, he can’t see dust and is lousy at cleaning the bathroom, so I do that bit by bit), cooks, clears up, washes, irons, shops and deals with all kinds of things that I just can’t anymore. But I know what he does and tell him I appreciate what he does.
So, your husband may not appreciate your self sacrifice, but I do. I know what you do and don’t honestly know how you keep going. You are one of the many unsung hero’s of the disabled world. Without you (and others like you) we would be very much less well cared for and living a more miserable life. You are wonderful for all that you do.
I wrote the following before I had read Sue’s comment’s, so please excuse the repetition.
What you are talking about is not selfishness but carer fatigue. The stress of being a carer can leave you vulnerable to a wide range of problems, including depression, anxiety, and eventually burnout. And when you get to that point, both you and the person you’re caring for suffer.
You need to have serious talk with your husband about “Me time”. Call it tough love but unless you don’t then he’ll continue to take everything you do for granted. Your husband is the one being selfish and is using your guilt to keep you in place.
You need to empower yourself and not be subservient to his needs. That “sickness and in health” nonsense was written in the days before penicillin, and a thousand other things that keep sick people alive for decades. In those days, when someone got really sick they were usually dead within a year; usually more quickly. Whatever your reasons for staying with him, it won’t last long unless you find a better way for you to live.
I have PPMS and, although I’m not bedridden, I’m still intensely grateful for everything my wife does for me. But if I treated her the way your husband treats you she would have something to say to me!
And Anthony is quite right.
Many thanks for your supportive words.
Thank you Anthony, you are very generous considering you are suffering from this dreadfully debilitating condition, your wife is a lucky lady to have such an appreciative partner.
[quote=“Anonymous”] , your wife is a lucky lady to have such an appreciative partner.
Actually, I think that being appreciative is a non-negotiable part of the deal for those of us with MS (me included) who are lucky enough to have supportive partners.
For sure, there’ll be times when the misery/pain/hopelessness/depression of MS will make the sick person behave poorly and be selfish and hard-to-deal-with. But no one gets a permanent free pass to act His Majesty the Invalid with no regard for his partner’s well-being, I think. .
I am sorry that life is being so awful.
I cried for you. One solitary tear that’s a drop in a ocean of sadness. The ripples of this disease don’t stop at the person with ms. Im at the begining being only a few years in but since diagnosis we have spoken about how we would keep balance and fairness. My biggest worry is the effect on those around me. I’ve asked Mr FB to leave me because I can’t bear the thought of him caring for me to the extent where he is feeling these totally normal and understandable feelings towards me. We couldn’t be without each other so we compromised and I made him promise me he will pack me off to a day hospice or frankly anywhere that will have me and he will visit me or take me home at night but he has his own life as well. These were horrible and difficult conversations to have but I value his quality of life next to my own so it’s important. I like to think I would do the same for him but I spend my life forever grateful for all he does… it certainly sounds like you deserve the same. I’m in awe that you somehow hold down a busy and demanding job as well. This is a part of the disease I don’t like to look at too much, but it’s been refreshing to hear such an honest acccount of being a carer. It’s certainly served to remind me. Sending you love and kind wishes that things will improve for you Xx
Oh FB that’s so sweet, almost brings me to tears. I really hope you don’t end up in Foggy daycare (I’ve never ever suggested the same, and I’m a tad closer to needing it than you!). But you and Mr FB are so lovely and caring for each other.