Struggling

My partner of 30 years had a stroke 5 months ago. He had fantastic care in the accute hospital and then the rehab hospital for about ten weeks. SInce the end of July we have been at home with a carer coming in every morning to get him showered. Other than that I do everything. Apart from feeling tired I am really worried about our relationship. We have been together for 30 years (even though he is only 48 now) and been very happy.
What is really upsetting me at the moment is that he has started to call me “mum” - not every time, and he usually corrects himself after. I don’t want to be his mum, I want to be his partner.
His speech has been severely affected and he does struggle with finding words. He is slowly improving and he is determined to go back to work, but I am not so optimistic now. I just want our life back the way it was before but I know that can’t be.
Should I correct him? I feel guilty because when he did it tonight, I told him how it upset me. Most of the time I am able to keep cheerful but this has really got to me.

Hi Jon, Five months is very early on, but,importantly, he is a survivor. My stroke was 19months ago and,initially, I could not stand or use my arm and hand. At the time, my partner and I had been together 37 years. I remember him saying that we had nothing to look forward to, but this has not been the case. Age UK fitted a seat in the shower and I was taught how to get in and out of it so,unlike your partner, I can shower myself.

I was determined to work hard at improving and now walk with a stick, cook, bake and can do a little ironing. I do still have post stroke fatigue, but still go to exercise classes. Quite early on, I insisted firstly, that my partner have time away from me and,secondly, that we go away on a short break. The break was tiring for me, but proved we could have a good quality of life together. Since then we have had more short breaks and on each one I can do a little more and walk a little further. So, I think I am saying that things can and do get better.

We have now been together 39 years and our relationship is probably stronger. When the stroke happened, I was quite sad at his distress and worry. That has eased with time and our relationship is almost no different than before the stroke. Might his calling you ‘mum’ be somewhat Ironic? I found it very hard to have my partner as a carer and eventually talked through my concerns. I still get ‘checked on’, but am now treated normally and not as a patient.

At this time, your partner needs to be encouraged o do what he can, so you may need to show a bit of ‘tough love’. In the early months I tended to sit and feel sorry for myself,until the day I got told off for not putting the washing up away. After that I set to , to do what I could, even if I dropped things.

All I can say is ‘stick with it’. Maybe joining a carers group will help? That is something else I got my partner to do in the early days. It really helped him unload his thoughts and feelings in a safe setting. More than this I cannot say. Stroke is hard on the survivor and the partner, whatever the relationship. I wish you both all the luck in the world.

Hi Jon,

Sorry to hear about your partners stroke, I am no expert on strokes, my mum had one three weeks ago and she is the first person in our family to have one so I have had to do a lot of learning but at the beginning of her stroke she was very confused and kept asking me to bring her sister to the hospital ( her sister has been dead for about 10 years ) I asked one of the nurses what I should say to her, the nurse said just try to gently bring her back to the truth, i.e. explain to her that her sister is dead, this in itself was upsetting for both her and me but now three weeks later she has stopped asking for her sister and is much less confused, I believe that confusion is quite common in the early stages of recovery.

Hi Jon, its now 12 months since my Husbands stroke which left him with severe Aphasia and right sided paralysis.It turned our world upside down.I have had support from the fantastic people on this site .I joined a carers support group and also had councilling. My Husband has improved slowely each week.He is no longer dependant on me for showering ect.His speech began to improve at 10 months ,and he is learning to read and write again. We also became Grandparents for the first time ,took a short break away and I am just starting a phased return to work . So there is hope and things will improve, I am beginning to feel like a wife again not just a carer.Keep positive,you will get there too.

Jon, I can confirm John Jeff's words,
It's v v early stages of recovery a few months on in stroke world. You said yourself he is slowly making improvements, this will continue day upon week upon months....even (don't be alarmed at this) years after, improvements continue.
The majority of it is usually within the first 2 years.
As was said earlier, encourage all progress no matter how small.....he must also find his fight and drive from within himself too.
Encourage that, be positive, look after yourself too. Many people in caring roles can forget to care for selves, focussing too much into the cared one.
Encourage any excercise he can manage.
Rest when needed. Keep well nourished, both of you. Alas there's no quick fixes in stroke recovery, he is in a strange new world now. Things do get much better, the downside is, it's ever so slow.
Better times are coming, I promise.
Vinnie.
Ps.
Sharon, fantastic to hear about your husbands continued recovery. More and more will come.

Thank you all for your replies. I know things will improve and I suppose I will learn to live with it more - I just feel very sad most of the time. He loved reading - always had at least half a dozen books on the go - but now won't touch a book. He played the piano, and now, obviously, can't. The fatigue is as debilitating as everything else for him too. My work are bing very supportive and allowing me to be really flexible which is a massive help.
I am also a bit worried about the care package. The council are in the process of transferring our care to an agency and we will be expected to contribute. I have no idea at all how much it will cost and I worry because all our spare money is going on physio and speech therapy. We don't have much in the way of savings but on paper Damian's income is OK now he's getting a PIP payment, but I will resent cutting back on therapy.
Anyway - today is a new day and will be better than yesterday.

Jon, Just a few more thoughts. Unfortunately, health authorities vary in the support they give to survivors. I live in Worcestershireand had six weeks support from the Community Stroke Team when I first came home. Raised toilet seats, walking frames, stick etc., were also provided by the health authority. I then had nine months of weekly physio at my old hospital. After a long wait I also saw a neuropsychologist to check on my memory (which was okay). Due to cataract problems, as well as the stroke, I virtually stopped reading, but irritated my partner by buying an iPad and posting on Facebook.

I can tell it is hard for you to adjust, but better times will come. I loathe post stroke fatigue. It hit me like a ten ton truck on day two out of hospital. I spent most of that day in bed. I am now down to an hour a day resting, but resent that.

From the survivor’s point of view, life back home is scary. You wonder if there will be another stroke, the house seems full of hazards and you have falls. You have battle for improvements, but they do come. Your partner will improve, but as others have said, this will come slowly.

Finally, you must care for yourself. Do not think on what used to be, focus on what can be. I used to love country walks, but those days are gone. However, I can still walk and that is great. There will be better days ahead.

Dear Jon
Lots of sensible advice from stroke survivors.
So, for the first time ever, I wont say a lot.
Please try to work at the fact that your partner will not be the same person. I hope he has a super and big recovery but he will not be the same. Concentrate on what he can do and not on what he used to do.
And please look after yourself right now. Your partner needs you. He needs you fit and well. Get away for an hour or two every day, then build on that.
Best wishes
Colin

Hi Jon, its an uphill struggle for both of you its 3 years since my husband had his stroke and for the first 2 years he called me doug, john nan mum and sue {we dont know a sue?]we bothed just laughed because he could hear what he had said but his brain is saying another name uncontrolable im affraid i bet he had a little sparkle in his eye when it comes out wrong the more he tries the worse it will get until the next time ,my husband couldnt talk at all for at least 6 months so any words apart from der,der ,der, were great 3 years on and we can talk together slowley but quite clearly ,still not quick enough for a row yet? ,so thats good . so many little things will flag up along your journey like not being able to maybe kiss the top of your head only a big raspberry noise that was a good one or blowing a kiss the sound of a letter p comes for that ,try to go with the flow its very early days for your hubby does he have speech therapy ,if not you tube seems to offer loads of programs or google ,we run a biker band b in france so very busy and i had to take on complete running for the first year or so because bill slept most of the time and we dont have the same help in france so i had to bath and feed bill ,but we are getting to the top of that hill.life has changed but who cares we are on a new adventure dont feel bad about feeling guilty tomorrow you may feel sad the day after happy go with the flow you cant change a thind only help it on its way a big hug and a cheesy grin is on its way to you and your man caz

good for you! you dont want to be called mum and made it clear. you will probably have to tell him a few times til he learns this. that said, i wouldnt take it to heart to much and like everyone has already, it is early days. ditch the guilt associated with asserting yourself. i find the guilt is probably the most exhuasting part of caring, but it is misplaced.

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