I don’t have ms - my partner does and has for 7 years, he’s 38, I’m 34 we’ve been together for 12 years
I’m so used to it now I suppose I don’t remember much about what life was like before but I’ve always gotten a “poor Wayne” response from people, as though I make him do things he doesn’t want
He also has depression so a lot of the time it’s an effort for him to do anything, he won’t speak up, in fact he hardly speaks at all, he never looks like he’s having fun, he never looks like he wants to be where he is, and he never makes decisions, and I totally understand that, but other people don’t.
I on the other hand, I’m loud, Funny, talk a lot, always smiling, always trying to make the most out of my life, life and soul of the party, easy to get along with, always upbeat - basically the complete opposite to Wayne
On several occasions lately, although I’ve always had it said to me…I’m too over powering, I must let him speak for himself…let him make the decisions, I over power him all the time and the poor guy this the poor guy that!!!!! Yes that’s right, they all feel for Wayne because I make him do things he clearly doesn’t want to do - you can tell by his face.
Yes I do get him up for work (we work together) because otherwise he’d stay in bed all day.
Yes I take charge of our business (because he has cognitive issues)
Yes I do plan all our meals for him and us (so he eats a healthy diet otherwise he’d love on crap)
Yes I do make him go for a walk (because his body and mind need the exercise)
Yes I do plan our holidays (because we both need the break)
Yes sometimes I do talk for him (because he can’t speak very clearly and gets embarrassed and has asked me to)
Yes I do take charge of most things (because my partner has multiple sclerosis and struggles with daily tasks…he needs someone to motivate him and keep his spirits lifted because he’s fighting a battle in his head that not even he understands.
Why do people constantly feel sorry for him and treat me like the evil puppet master? When all I’m doing is caring for my disabled partner in the best way I possibly can, and now it’s coming from my family. People talk about us all the time and he’s always poor Wayne and I’m the bossy cow that likes to control him….it hurts that people could even think like that of me 🙁🙁🙁
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bandicoot1987
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Well, you are a very, very, supportive partner. You deserve a medal, you really must love Wayne. Maybe it’s time that you started doing something for yourself, so you don’t start to burn out. I am sure Wayne can see what you do for him, and appreciates it. Big hugs, blessings Jimeka 😊
Care taking is a tough job and handling everything else that comes with it. Good thing you have the out going personality and can absorb criticism. People don’t understand what goes on behind closed doors and what you do to keep things together 👍 Be sure to take time for yourself and don’t worry about what others think🙏. Some outside help may give you a break and time to do other things. Good luck and prayers are with you and your family 👍🙏😉🤗 Ken 🐾🐾
and YOU forgat the bit about how lucky he is to have a caring partner like you, and yes he is lucky, VERY LUCKY. Look after yourself as well, maybe picnics doing nothing, no plans just Vitamin D and sunlight.
you can always ask others to help so they can see how he is in real life and then they can say how much you have to do to keep him going and alive ...great job to keep him alive and well...wow ...great job ...love and happiness is hard to do with someone that is sick and doesn't realize that they need this help...
It definitely sounds like a case of ‘opposites attract’ with him being more introverted and you being the extroverted one. That happens all the time, but it seems people are taking more notice since he is disabled as if there is more going on. It sounds like they are suspecting a power imbalance and wanting to make sure that his best interests are in focus.
I know it’s hurtful but try to remember they are inquiring out of concern for a loved one, and what is most important here is that you and he have a healthy relationship. As long as what you are doing works for you both, then keep going with it!
The part of what you wrote that concerns me more than their talk, is that you mentioned that he is depressed at times, and doesn’t find joy in his daily life/activities. I hope that his physicians take note of that and offer treatment. Becoming disabled can take such a toll on one’s mental well-being, as your expectations for the future are shattered and going through that can be an isolating experience even if surrounded by loved ones (because they aren’t going through it on the same way).
I also hope you are getting some support as his caregiver. Most (if not all) caregivers need some respite as it is very exhausting work to take care of someone with high needs and leave little time for looking after oneself.
We do fun stuff all the time. We go camping, fishing, walking, beach, we go to the pub and watch darts, we go to caravan parks, we do train rides, we go up over the hills and to reservoirs, we cat sit and we do dog walking, we play cards and have bbqs and themed dinner nights, we spend time apart and together…I try my absolute hardest to keep him going so he doesn’t get bored and if he doesn’t feel like it then we stay in watch films and chill xx
Thank you 🙏🏼 and no he doesn’t have help from anyone, we don’t have friends like that, during the whole of lockdown not one person asked how either of us were doing, his family don’t talk to him and all our friends disappeared when they found out what he had. Just a couple of people throwing their opinions round from an outside perspective not even understanding what multiple sclerosis is.
Wayne has only ever had support from me, no one else bothers with him. That’s what made me angry…they judge so quickly but where are they on the days he can’t walk and talk!!! It’s not fair for them to say the things they say when they have no idea how hard it is to look after someone with a disability who has zero help from anybody else.
We don’t even claim benefits and we’re trying to run a self employed business as well!! There’s a lot that people don’t see…they assume we get all the help under the sun and the truth is we don’t get one poxy little thing. It makes me so frustrated xx
So I’m going to take the approach of talking points for you and Wayne. I am in a similar situation as yours I have been with my husband for over 30 years I have been with him since I was 14 years old so he has been with me on this journey for decades. We have two children now teenagersI used to volunteer in their classrooms take to and from school sports did the bills did the cooking and the cleaning do the shopping do everything you can think of. & work part time. I was not diagnosed until aug 2017 however I know I had this disease since I was probably 12 or 13. It was a horrible relapse that finally led to diagnosis and has left me with the full-time job of dealing with this disease. My husband has taken over everything else plus working full-time. My children also do a lot. As the sick party I feel extremely guilty at times which then leads to me feeling useless because my husband is doing everything I used to do and I know how tough and wearing that is.
One of the things I need to remind my husband frequently is that he needs to let me do things for myself and either fail or succeed he often will just do it because he knows it’s easier for him to do it but really that’s not what I want and it’s probably not what Wayne wants either. The other issue we frequently discuss is sometimes my husband will either think I want to do something I don’t want to do or the opposite he will think I don’t want to do something that I actually do want to do. It’s really about communication and keeping those lines open I think in relationships there can be a lot of assumptions made by either party. This has been four years we seem to be having the same discussions over and over because it is a tough situation for a couple to be in. We both mourn the couple we used to be.
When it comes to other people let them talk-it is your relationship. I frequently get the oh he’s so nice I wish my husband did that for me. 🙄
I feel confident in saying Wayne knows what you do for him and why & he appreciates it. You don’t owe anyone an explanation.
My last words of advice is sometimes we need our partners just to be with us in the suck and let it suck 🧡
People suck, walk a mile in someone else’s shoes. Recently I complained about caring for my husband who has Parkinson’s you make me feel like crap and better all at once. I am that person who does all the decisions, chores and manage his illness and my MS. I’m pissed he doesn’t do more for himself while he can. I’m afraid if I do more he will do less just because he has me. You sound like an incredible person, partner, spouse and caregiver, who needs to realize that no one should judge you. Maybe they - people with their opinions - could offer to help and see how he is to understand why you do what you do. Stay strong I need to go work on being better about my husband.
i had a friend who used to say that most people were 'idjits.'😀 she had a point. for the longest time my mum was my dad's carer as he suffered with parkinson's... but it got to the point where she was physically hurting herself when lifting him and always exhausted b/c he'd fall out of the bed and she was worried he'd hurt himself while he slept.
so they talked about it and he went to a VA nursing home. his siblings that never came to visit him (including his sister the nurse who would come to his city and not see him, smh) would call my mum and berate her for 'dumping him in that place.' and she'd get upset, but i couldn't have cared less! those people were not around when he fell and we couldn't lift him (i'm in limboland, but i've had gait and weakness issues for years), they weren't there when he got urinary infections and couldn't even speak.
yet they felt entitled to judge.
f them. and f the people judging you. like any other couple, what goes on in your relationship is no one's business but yours and your partner's. i can't with people. as if they don't have their own messes to tend...
when i started reading your post, i thought you were going to talk about being fed up with him b/c being ill all day every day for years is exhausting for us and it's painful, too b/c our loved ones watch us suffer. i despise 'dr.' phil, but one thing he said that made sense was that an illness affects the whole family. and until they are in your shoes, they need to back off.
or as rupaul would say, 'unless they're paying your bills, pay those b* no mind'😆
Please don't let others distract you from What you are doing. What they think doesn't matter. If you two are happy with what you are doing then that's all that matters. It would be nice to hear what a great job you are doing but you probably don't do it for the compliments. When people call you bossy then is the time to invite them to walk in your shoes. And you can remind them of you didn't do what you do he would be bed ridden & the MS would take over. Prayers for you both!🙏🙏🙏
I know I didn’t see this thread when it was posted but I saw it today…today I needed your words and those of others on this thread.
I have been feeling lazy and useless and looking to get answers. My husband in one breath says “medicine takes time” and in another “they throw pills at you hoping one sticks.” I agree with him but I also know he’s been doing everything lately cause I cannot. I don’t want to be this way but I’m hopeful it’s temporary and a blip in life. Could I eat better -yes, could I workout more- yes (just not today) and do what I can - yes just not everyday.
I know I’m lucky for my family as others just do the “oh that sucks for you”, “oh that sucks for him”, “oh that sucks for your family” or the fake “that’s horrible…” when they have no idea what it’s like, how it impacts all of you and what measure you take to have a good life with MS. MS taking last place behind all that matters. The problem MS is that person that screams the loudest and everyone wants to shut it up but it’s here to stay.
It’s learning to deal with the annoying screaming daily and still live one’s best life and those of their families/partners and friends (the kind that are worth keeping).
I am used to fixing things for everyone but I can’t fix me and I don’t need pity- I need support and love and that’s what I feel you do and have given Wayne. So go you with your bad self and don’t let those outsiders get you down. As you are living the best life with those you love and no one can understand what they don't know - they can empathize but unless they relate like really relate it’s hard for them to judge or critique as frankly they don’t know. They are showing they wouldn’t handle being in your shoes or Wayne’s. They are the people you hear about that can’t handle their loved ones being sick or themselves- cause they are weak and you are strong!!
You needed the vent, you needed to feel like you weren’t alone or crazy 😝 you’ve come to the right circus 🎪 cause we get it! Every day is a new show with new acts some more entertaining than others 😁😂
Hope that made sense and my short note is many of us relate to you and your spouse. ❤️ You both sound like you are doing the best you can!
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