My husband had a stroke last March (over 12 months now), I know recovery is long but how do I encourage him to explore outside the house, his mobility is ok, he doesn’t drive though anymore so relies on me (I work full time in a pressured environment). Therefore I am limited to what we can get to during the day. I have suggested local groups but the response I get is “I don’t want to be sitting in a room with old farts complaining about their lot”. The negativity is starting to get me down.
I do tell him that we should be looking for things to be grateful / thankful for, for instance his stroke occurred right in front of me over dinner whilst we were out, therefore help was quick. The consultant subsequently told him that if it had occurred overnight or with no-one present he would not have survived, therefore I consider that we were lucky, but he cant see that.
Anything, anyone can suggest I would love to hear and will try to get him involved. We live on the Wirral between Chester and Liverpool. Thanks everyone x
Hi @BettyOwen, I’m sorry to hear about your husband’s stroke. It sounds like he is really struggling and I’m sure that can’t be easy for you.
Thanks @Loshy for bringing me in. There are a couple of things I can suggest in terms of online groups, but do keep in mind that you are just as welcome to join these as your husband.
Online Activities - A great way to do social stuff online over Zoom. Some sessions are focused on life after stroke and others are just focused on life, having a laugh, etc.
Here for you - A weekly phone call with someone who has had a similar experience to you. Your husband may take some comfort in speaking with another stroke survivor. You may find it helpful to speak with another carer who understands how your husband’s negativity is affecting you.
Online support groups - In addition to local support groups, there are some support groups that are exclusively online. This may be a way for your husband (or yourself) to dip your toe into support groups without feeling “stuck in a room.” A lot of these are tied to regions but will mostly meet up online.
Hopefully this helps. If you do have any questions, you can always get in touch with us or give our Helpline a call on 0303 3033 100. They are an amazing team who can help you find information or point you in the direction of support.
@BettyOwen welcome to the forum. Sorry your husband had a stroke & that you’re having difficulty getting your husband to engage.
Do you think he is afraid to go out in case he has another stroke? If so, he may benefit from a consultation with his GP who can go through it all with him.
I was a bit nervous about going outside initially but tried just going into the garden & sitting watching the world go by. Slowly, i then started to venture a little bit further.
@TRFCANDY53 I believe knows of a support group on the Wirral. Hopefully I’ve got that right. Your husband would probably be surprised by the age range at these groups. I imagine a lot of them are quite positive too. Many people on here attend stroke support groups.
The Stroke Association also do some online activities. Things like quizzes, genealogy sessions, chats etc. I join these & enjoy them.
He could also look at other groups…maybe not stroke related. Something that interests him.
Perhaps he has a friend who might take him for coffee or lunch? I can’t get out without someone taking me but i have a friend who takes me for coffee occasionally.
Hope you manage to find something to encourage him.
Hi Betty - very sorry to hear about your husbands stroke, im Wirral based too and am still receiving fantastic ongoing support from the neurophysios at Clatterbridge.
Was your husband at Clatterbridge Rehab Centre?
Whilst i was in hospital last summer i received some info for the local stroke association team who are based in West Kirby.
My contact there is a lovely lady called
Liz Eddowes and her number is 0151 625 3996.
They have organised a 12 week programme of help and informatio and support being held at Kylemore Community Centre on Kylemore Drive in Pensby. Free to attend dnd looks very comprehensive and useful. Lizcan give you more details when you and your husband can join in.
They run them in spring and autumn.
Hope this helps
Andy
My stroke was May 2022, aged 53 nd im still recovering.
Would your husband consider public transport (if it’s accessible to him). I find the bus and train not only a good way to travel around they are a way of meeting people, keeping “supervised” by someone other than your loved ones, and a good topic of conversation. I am lucky though as I do have access to concessionary travel
Hi @BettyOwen, sorry to hear about your husband’s stroke. I hope you can convince him to have a bit of a read through some of the post on here. I initially read posts for a few months before deciding I had a lot in common with these people.
We are not all old farts, I’m 57 (so a mature but not old fart). Many of us are of working age and some of us are back working. Regardless of age, there are lots of funny, clever, companionate and friendly people who understand what he (& you as his carer) are going through. If he could be encouraged to read through and engage with the forum and the stroke association in general he may well come to the same conclusion as me…that it is an absolute life saver!!! It could well do wonders for his recovery and mental health like it did for me and other on here.
If he doesn’t try, he’ll never know but I think you’ve done the right thing by having a look (& no I’m not being paid by th SA to big them up, it’s what I genuinely believe).
Good luck and I wish you and your husband all the best.
Mark
I can only speak from my own experience. Im with him on not eanting to sot in a room with a bunch of old farts complaining. I felt much the same in the early days. I am 7 years post stroke and still here thankfully. The first couple of years are hard. I was still in a job, which collapsed under unpleasant circumstances. I am not a very gregarious person but I need contact outside my family just for my (and their) sanity. Things that have made a difference:
A small electric wheelchair I bought last year. Really helps even though I still don’t go out alone.
Companion tickets for theatre and concerts. Most venues have access schemes that give discounts on tickets for companions I often get free companion tickets.
The main thing is to get to do stuff you actually want to do
I did try a local stroke support group but I hated it and didn’t go again. It works for some people but didn’t for me. I meet up periodically with friends who take me for lunch or coffee. I never had a big circle of friends but I do have a few good mates who I can do that with. It can be quite exhausting but I never regret it.
The key thing is doing what you like to do, so if you like a beer, there’s almost always someone who will be up for it. I like theatre, art, music and suchlike and getting out to shows or exhibitions has been a lifesaver. It can take meticulous organization. I can do more of that now than I could in the early days, but it is still both daunting and tiring.
As his main carer with heavy work responsibilities you’ve got to look after yourself as well. What did you do together before the stroke? Are there versions of previous activities you could try. Youll have to be inventive.
I don’t know what his main impairments are mine sre mobility cognitively I don’t have any real issues so can’t really comment on that. What floats yer boat? Do that
You still have a life to live
Have a great time
TONY
I’m with @Anthony.Nickson on that, the only way to reach him is to find interests that grab him. My sister was suggesting bowling, golf, tennis even:face_with_spiral_eyes: all things I had absolutely no interest in. So I found my own, in the gym, a strength & class, a hiking group.
And an aphasia social group who are mixed age group who anything but sit and grumble. Not all stroke groups are about therapies or counselling or whatever. Last month we had an insightful talk on the prison service from a member of the imb (Independent Monitoring Boards), next week we are going on a day out to play tourist around Liverpool, we’ve been to Manchester museum, the theatre, etc, etc, etc. Not all these groups are about grumbling about our conditions or anything like that. Two guys were rugby players in their younger days, so we’ve had lots of hilarious anecdotes from their heydays.
The picture I’m trying to paint is that the beauty of such groups are, in a way, an escapism from all things stroke. You can just be yourself without having to explain or apologies or even reminded on your condition. It’s a beautiful break away from all that and you get to enjoy all sorts of activities and interests, try new things, all with people like ourselves without half the logistics behind doing them. You make friends with mutual interests to meet up with outside of the group.
And this comes from a woman who is a shy introvert in real life and I’m loving it, you really don’t know what you are missing out on…unless you have already tried them. Oh and transport is not necessarily a problem, if needed and trips out are most likely by minibus/coach. Definitely worth a look into…where there’s a will there’s a way
I wish I had one of those nearby. Don’t even have the grumbling kind. There are none near me. However, the group of people here give me escape from my own grumbling. I love you all because you are humans, but love you more for sharing your time and knowledge with me and others here.
Hello @BettyOwen are you socialising and seeing your friends or has life come to a grinding halt for you? Lead and he may follow. I had a stroke feb 23 i was 59 at the time and it comes as quite a shock and shakes you to your core, its scary and that feeling of being out of control of your own body knocks your confidence. Life is now unpredictable. Life is different now. Takes some getting used to. But the forgotten heroes in all this are the people like yourself who have to stand by and watch and keep trying to encourage us and cajole us to join in with life again. Don’t give up because some day your lovely husband will get the courage to follow you. Book a nice beauty treatment or whatever makes you feel like you felt before this event happened in both your lives. My very best wishes to you both
I truly feel for you and your husband. My husband has been looking after me since my first stroke 2 years ago and he also has an engineering business that he has worked around for me. We also have a pub and he works in the pub every weekend doing the stocking up and being dj every Friday and Saturday night. And on his day off he does the house shopping for us and his mom who is quite poorly. Try and focus on the good things you both have it helped me to cope with this situation. Sending you love and light and healing from Mother Nature. ( sorry I’m a witch) I hope you feel better soon.
Hi Betty, this is just a chat with memories of Wirral for me . I lived in Parkgate with my second husband for 18 years and I too was a carer . My husband had Dementia . I was not a good carer I must admit . I felt trapped as I know you do now . In 2021 he moved to a nursing home in London where his 3 sons live and I live here now . Tony died aged 98 at Christmas . I am now 80 and suffered a stroke last July . To see me you would have no idea but pressure in my head makes me often think life is not worth living . I am so sorry you are going through this nightmare with your husband . Everyone tells me it will be better in two years as you and your husband are told too I am sure but it is hard to keep faith and to believe this will happen in our daily miserable existence . Parkgate remains in my minds eye most vividly . I had the most beautiful garden with entrance on the front . Do you know the Elephant ? A favourite haunt . tThose endless sky scapes and different coloured grasses on the marsh . I sincerely hope your husband does return to his old self and the life you loved will return one day . The Carer needs as much caring for as the patient . Don’t I know it . Good luck
Hi Betty,
Sorry to hear about your husband’s stroke. It will be a difficult time for you both but hopefully things will ease a little and your husband will want to start going out and meeting people again, but sometimes it’s going to the person who had the stroke that will decide when that will be and what they will like to do.
It can be very embarrassing when you start going out amongst people again and the stares etc and he will know that it is pressure for you too. He obviously is positive because he is already saying he doesn’t want to be stuck in group with people moaning about their lot, so you’ve got to think that is a positive feeling and make sure he keeps it;-)
You might need to have a break yourself too, not just going to work, but going out on your own or with friends as life has now changed and you’ve both got to get accustomed to it and be able to live a happy life, but in a different kind of way.
Come back here anytime, as I’m sure you will have plenty of support and suggestions here. Take care of yourselves, Bert.
HI - I can completely empathise with your situation (though from the other side) . I had a TIA during christmas lunch 2021 - and only survived / had so few post stroke problems because my family were with me (obviously) and got me immediate emergency care which ) I believe saved my life).
Having been a very ‘sporty’ and very independent person before the stroke, I found the post stroke period very challenging. I found one to one counselling very very helpful and made me realise a few things …
as you said ‘It could have been a lot worse’ - I consider myself very lucky to be as well as I am … and alive !!!
My life is very very good ! yes - I can’t run anymore and I’ve put on 12 kg in the last 12 months a s a result, but I have so much to live for. Since my stroke I’ve been on a cruise around the arctic and am now starting a degree in ‘Astronomy and planetary sciences’ with the open university.
It’s Ok to be completely ‘emotionally thrown’ by something like a stroke. For me it has forced me to face up to the inevitability of my own mortality, and to start thinking about ‘what do I want to do with what remains of my life’. In many ways this has been a complete ‘revelation’ to me and i’m now happily spending my kids ‘inheritance’ on things like a cruise to the arctic, a tour around Japan, and hopefully a cruise to French Polynesia.
The latter point was , I think, the hardest for me to deal with - death - it is inevitable but we don’t like to think about it. Just talking (especially to a ‘non emotionally invested’ third party ) has helped me stop fearing the future and also to see what a great life I’ve had so far and how there are great things ahead of me still !
Your husband is probably very scared at the moment ( I know I still am!!) but the only way to deal with fear is to face up to it and say ‘what am I going to do about it’.
All I can say is ‘good luck’ and try , where you can , to be forgiving , your husband ( if he’s anything like me) is probably a horrible combination of really , really scared and also uncomfortable with admitting weakness (men ehhh ???)
@KeithP63 a lot of what you’ve said resonates with me.
Facing up to your own mortality is one of the most difficult things to do. I know I thought I would live forever pre stroke but now know I am fortunate to be here. I also intend to live as well as I can doing things I want. An artic cruise sounds amazing. Think I’ve just added it to my bucket list
@KeithP63 and @Mrs5K What helpful replies! Keith, it is my own fear not of dying, but of spending my children’s very limited inheritance that worries me. By still living I have already spent a bit of it. Bought myself a very comfortable bed, and have been spending on repairs for anything needed in the house…that will be the bulk of their inheritance (my home). Don’t want to leave them with a mess. I don’t particularly want or need to travel as I do that through talking with people around the world who share their cultures. I wouldn’t mind a nice European River Cruise, though. Maybe I should spend the retirement money on that? Probably not…they are very expensive and I will probably need the retirement for groceries. It is a pittance. Glad you are enjoying your travels and your life! I am enjoying my home and my life as well.
@DeAnn i’m sure your kids would prefer that you lived ok now rather than struggle so they can get an inheritance. I know thats what I’ve told my mum.
Years ago i wanted to do a cruise but couldn’t really afford it. I started chucking my loose change in a jar and i eventually got that cruise. So your river cruise may be possible yet you never know.
I am certain you are correct. My youngest would probably survive okay without inheritance, but the older has Traumatic Brain Injury and struggles. She hasn’t worked for 7 years now. She needs help. Even with what I have to leave, it would not truly care for her, just a help. I can do without a river cruise, but love your sweet sentiment.
