Where to start, it’s so devastating.
My wife had a stroke 2 months ago, totally unexpected, she was the active one, always on the go, walking the dog and doing her part time job.
She is paralysed down her right hand side, very little speech, she knows what she wants to say but the words don’t come out the way she wants and she gets frustrated.
The physio has her walking a bit with assistance and hoping there is more to come but I understand it might take a long time.
This may sound selfish but I miss her the way she was, I’ve always counted on her as my rock and partner, we had a very active sex life but I fear most of that will be gone.
I’m staying strong for my wife, the physio, speech therapist and nursing staff have all been great, but due to covid I can’t visit her.
She calls me but most of the calls she is crying, I know her condition means little conversation or interaction and it must be really hard for her, it also hard for me to listen to her crying and I just want to go and get her, bring her home and cuddle her until she feels safe again.
At the moment I’m really struggling and lonely, it’s hard to see how its going to get any easier.
Hello Peter
Welcome to our forum, I am so sorry to hear your news, you must be absolutely devastated and understandably you are feeling lonely and struggling in coming to terms with your wife’s recent stroke. I’m not sure if you have heard about our Care for a Cuppa chats Peter? During lockdown we set up some weekly online zoom sessions for members so that carers can come together, talk, share experiences, tips and advice. There’s no pressure to share anything you’re not comfortable with, many carers who have joined the sessions have said how much they’ve benefitted by having a safe go to place to chat with others in similar situations. We would love you to come along if you would like to, we run the session for an hour each Monday afternoon at 3pm. Please have a look at the link, this will give you more information and a link to the registration Online meetups | Carers UK
We also run weekly Share and Learn sessions, information can be found on this link
Share and Learn | Carers UK
The share and learn are sessions that are a series of fun online sessions, we’ve had guest speakers, yoga sessions, dance classes, first aid, and many others. Please have a look at the above link for more information.
with all good wishes
Ingrid
It must be awful not being able to visit or hold your wife close, for both of you.
My husband and I were also very close, we even ran a business together based at home. As long as we were together, we felt we could tackle anything, and we did, from shipping steam engines round the world in our twenties, to turning a semi derelict cottage without even a flush toilet into a cosy family home.
I’ve had some serious operations, when I was in hospital all I wanted was to be home again with him, and have a hug, knowing that he was there in bed next to me. I’m sure your wife will be feeling the same too. You are both going through a grieving process for what you may have lost.
When will you be able to see her in hospital?
Hi Folks, thank you for the replies.
After contacting the chief of nursing at the hospital I have been allowed to go up at the weekends and take my wife out for an hour or so, nowhere far, just in the hospital, so I take her up lunch and we spend some time together.
This has been a blessing I never thought I would get and I was very close to bringing her home once or twice but I understand that the threrapists are doing as much as they can to get her some mobility back.
I’m a bit concerned and scared about her getting home, I want this more than anything in the world and I think I will cope pretty well with any challanges but what if I can’t?
I’ve been through a range of emotions since it happened, could I have done anything to prevent it, was the last year with covid and worrying about paying bills to blame, what’s our life going to be like now.
I’m doing all the things she would be doing if at home, washing, ironing, shopping, house cleaning, finances, walking the dog (which was never my thing), getting adaptations to the house to make it easier for both of us, but I’m tired and not sleeping very well.
I wonder if doing all these things had contributed to her stroke and am I next, worrying times as who would look after her if anything happens to me?
Sorry for the long rant, I’m sure things will be fine, she’s getting out a week on Thursday, I can’t wait.
Peter, I’m a great fan of lists.
Write down all your concerns, and then list them in order of priority. I used to say on paper but shuffling lists is so much easier on a computer.
Before discharge, your wife should have a visit to your home with a therapist, to see what she needs to make life possible at home, things like grab rails are provided free, to ensure a safe discharge.
Your wife will also be entitled to 6 weeks FREE Reablement Care which the hospital should arrange.
I’m sure I have thought of everything but probably not, all this is all very new and worrying to me.
The occupational therapist has been to the house.
Initially they wanted a bed downstairs but I know my wife would hate this idea, her experience with beds in the living room come from when her dad died and my mum died, so I don’t want her feeling thats whats happening to her, so I suggested upstairs as she would have access to the toilet and shower.
We also have a spare room that could get used as a siting room if needed but I want her to be able to be part of everything, she is after all my partner and I’m not bringing her home to be a prisoner upstairs.
My main concern is the stairs, she would have to be carried up and down, something I think I can manage as she is only about 7.5 stone due to rapid weight loss over the last 6 month.
Also finances is a huge worry, been gradually wearing down any savings we had, which was not a lot due to not being able to earn over the last year due to the covid outbreak.
We will be alright over the first couple of months, then my income will be cut drastically.
So if I had to list my concerns it would be the stairs and finances.
Thank you for your response.
Peter
Did the occupational therapist not talk about a stair lift?? You shouldn’t carry her. Or one of those house lifts? Such things can be funded. Alternatively, had thou got a garage that can be converted? I sleep in the garage now, my son converted it for me, it’s lovely.
My mum had a stroke 9 years ago. Right side paralysed and speech impairment . If you need advice please let me know. I wish you and your wife the best. One advice please ask for help .
Hello Peter,
Welcome to the forum. My husband had a stroke last July. There were no physical effects from the stroke and he was only kept in hospital for 4 days, but he has aphasia now, so I can sympathise with you about the speech problems. It is like a time of bereavement for both you and her, but at the same time you’re kept busy trying to sort out all the practical issues. Things can get overwhelming, but I find that if I deal with just one thing at a time instead of looking at everything I need to do it’s not so bad and I can pat myself on the back for getting that one thing done. That’s lovely that you can take her out - I hope it’s not too long before she’s back home with you again.
Every good wish for the days that lie ahead.
Gilli
Hi Folks,
Haven’t been on for a while, been looking after my wife who got home on 33nd April, I was so delighted just to have her back and thought I could handle anything life threw at us.
Can I just say that I would love to take part in “Care for a cuppa” chats and be able to speak to people in a similar situation but my PC is in the living room and my wife would be present,I just couldn;t be totallly honest if she was there, I don’t want her to know i’m not coping that well with certain things,
Here’s an update, my wife can walk about 100 yards with the aid of a walking stick but still needs someone to be there as a fall can happen any time.
I try to find little things for her to do, mostly to make her feel useful, although I could do them quicker myself but it’s all about making her feel like she’s getting back to normal.
Her speech isn’t progressing except for repeating words now and then, she has speech therapy twice a week and we work on her speech every day at home.
I think I’ve managed to get into a routine and coping except for the intimate side of things, just a cuddle or a kiss was enough to start with, I was glad just to have her back but I do miss the sex life we had.
It’s easy to ask for help for everything that she needs and have friends who have offered to come and spend time with her but where do I get help.
I’ve even convince myself that I wouldn’t be cheating on her if I had sex with someone else.
It’s eating away at me every day.
Sorry to rant on and on
Hi People.
One year on and been trying to get to grips with everything but it’s hard.
I’ve given up on the intimate side of things except giving her a kiss and cuddle, feel more like a full time live in carer than a husband and partner now.
My wifes condition hasn’t improved much in the last five or six months, still not much speech, no movement in her right arm but she can make it up and down the stairs for the toilet.
Recently she has not wanted to go out of the house, she used to go shopping with me using her wheelchair, then we tried her walking round the supermarket holding onto the trolley, she did it but was a bit tired afterwards, its a long walk up and down all those isles but I was really proud of her determination.
I keep telling myself she doesn’t want to go shopping any more due to the bad weather but I also think she doesn’t want to be a burden.
I’m still under pressure a bit but I’m going to find others who are local to me and in a similar position to talk to, see how they cope with it all.
A big thank you to everyone on here, i’ve not had much time to visit but the replies have been a lot of help.
Peter
My Dad had a massive stroke at the age of 52. It took almost all of his speech, the use of his right hand, and his right leg was weakened considerably. He had to relearn almost everything. That’s a massively daunting task for anyone, and your wife has the same problem. Mum cared for him but also missed the intimacy. I don’t think they were ever able to come to terms with that.
As it’s a year now since the stroke, I would think your wife is struggling with the reality that what she has now may not improve. She is quite probably depressed: she’s been through a hell of a lot and she knows that you’re also having to deal with a very different life. She probably feels guilty, even though she knows it’s no more her fault than it is anyone else’s.
One thing that can help speech is to try singing. Some stroke patients learn to speak again by “singing” what they want to say, but it’s probably best to get her singing a favourite song. My Dad hit upon this completely by accident as when he first had the stroke he was so confused he would sing Un Bel Di from Madame Butterfly. Soprano part, he was a tenor. But it got his vocal cords going, and he eventually developed some speech. It certainly isn’t a cure all but it can help a bit.
Did your wife wear makeup before the stroke? Because chances are she struggles with that now or doesn’t use it at all. If she was careful of her appearance, especially when going out (even shopping), that might be dragging her down a bit too. Is there someone who could perhaps help with that, or come up with a way of doing a more basic makeup job?
Peter,
good to hear back from you.
A great idea to try and meet up with other local carers in your area. In a similar way, it might help your wife to meet up with other stroke victims, see here to find out if their is anything local to you Support in your area | Stroke Association
In addition to Charles’ singing idea - she might find it useful to have a paper based system or electronic "talker’ to help her to communicate. The local community speech therapy service should be able to advise regarding this. There is information here about some of the options Helpful Materials - National Aphasia Association
Melly1