Hi I’m very new to this but I’m 39 and my husband is 53, 6 weeks ago he had a stroke leading to him not been able to move his right side so he isn’t walking, I’m finding all of this extremely difficult right now I’m trying to keep our house hold together as well as look after my husband, any support will be very much appreciated x
Dear Donna
So sorry to hear of your husbands stroke. It is a very difficult time for you. It would be helpful if you had a stroke co ordinator to guide you. The stroke association do have these peole, but not for every area. Give them a ring. Another source of information is any local stroke groups. Your GP surgery should have the contact details. No need for the GP, the staff should be able to guide you.
Best wishes.
Colin
hi Donna
is your husband still in hospital?
I can only give you my experience as a survivor. my wife held it all together and still does 3 years on.
I was 57 and in full time employment. does your husband have a job? my wife liaised with my employer to ensure that I had sick pay. and with the mortgage company to ensure that we could take a break in payments
I had left sided paralysis and could not walk. physio therapy in hospital got me up and walking with some aid after four weeks. I still don't walk well and need a stick. from the carers point of view it is very hard you are both going through a crisis, but you will come through.. he will have to do the work the physio and OTs prescribe. this will be hard. the OT in the hospital was very supportive for us. and once I was discharged helped set things up at home so I could return home. finally I would say just be there for him. he may not be able to give anything back at this very early stage but your love and encouragement will be a lifeline. if you can get referred to your local rehabilitation team that will help you. the hospital should do that for you but if not your GP will be the access point. go to see them ASAP and talk about what has happened.
for yourself. be there for him. thats your job. it will be the hardest thing you have ever had to do and you won't see much progress very soon. it is always incredibly slow and youll have to find reserves of patience. mdig deep. believe me when I say he just needs you to be there for him. whatever he says of however difficult he may seem at this time. I can't be thankful enough for the fact that my wife stuck through it with me. I know others were not so fortunate.. don't give up. things will change, and you will both come through it. I t is a mountain to climb for sure but the fact you have found the energy to reach out here is a Great sign. good for you and welcome to the club you never wanted to join! People here have been through it and can talk you through each painful step. keep reminding yourself that he survived a major threat. things will change. have courage.
tell us how it goes. we wish you both well.
best wishes
Tony
Hi Donna. Tony and Colin have given you sound advice. Six weeks is very early on in the recovery process. Support varies from area to area, but I had six weeks’ support at home from our Community Stroke Team. When I left hospital I could stand and walk a few steps, but it was a long time before I could walk even a modest distance. Like Tony, I walk with a stick. I make sure I have a short walk every morning and I go to three exercises classes a week. I am three years on now, but progress is slow.
Survivors like yourself suffer in your own way as you see someone change in an instant from the person he was to someone new and vulnerable. I am lucky that my partner gave me ‘tough love’ and made me do things. In return I made sure he had time away from me to recharge his batteries. He also joined a local Carers group and, in the short term, found it both supportive and helpful. We both take the ups with the downs and each day at a time. All the best!
Tony, thankyou so much for your kind support, unfortunately for us he is self employed landscaper so we are not getting any sick pay we have claimed for ESA but only get £115 between us weekly between us weekly and then we are getting child tax credit, he has been out of hospital for 4 weeks now and had no physio come and see him we are in a waiting list, both social services and my GP have rang our physio just to be told theirs a waiting list, I find this very frustrating and disappointing, my husband gets angry with me and says I’ve said things I haven’t said he told our step son at the weekend that I am evil ? this is far the hardest thing I’ve ever been thro and this is why I’ve had to turn to a group so I can get a better understanding of all of this xx
Dear Donna,
Unfortunately, I can't help you a lot, because I am new to caring for someone with a stroke too, my husband had one 4 weeks ago. Please take care of yourself, and take one day at a time. Just knowing you are there will mean a lot to your husband.
Thankyou colin, I’m feeling extremely exhausted and my husband is extremely frustrated, from reading the comments so far I feel like I’m not getting the right help and support for my husband as he was discharged 4 weeks ago now and we haven’t seen anyone as of yet ?
Thankyou for your kind words I’m glad I have joined this group x
Oh really? Sorry to hear this, I know we will get thro this but sometimes it doesn’t feel that way, looking after my 5 children as well as my husband as become over whelming, hope your ok to it’s good to talk to ppl that are in the same situation x
Thankyou to you all for your kind words, we have 5 children to so it’s had a massive inpact on us all and after reading some of the commoners I’m feeling maybe I’m doing something wrong as since my husband was discharged from hospital 4 weeks ago we haven’t had anyone come to see him, no GP no physio no OT Etc maybe I need to use my voice abit more, we don’t even have a shower room downstairs so I’m having to strip wash my husband every morning, we just don’t have the facilities in place, we have a standing aid and a commode and a bed I had to buy for in our living room, it’s all been so difficult x
Hi Donna, I am the wife of a stroke survivor - and 100% agree with Tony, it's a tough journey for the partners too, but nothing like the experience of a stroke, so you just have to dig in and pace yourself. This is a marathon, and you have to stay tough for a long time! My husband told me how much he needed me when he was in hospital, he wasn't able to tell me at the time, but he said it really helped just to know I was there. I don't think I missed a day, even if sometimes I could only spend an hour or so with him, but it's the familiar face that's so reassuring when everything else is in turmoil.
You might want to google "Letter from your Brain" it's an emotional read, but an insight into the post stroke journey. Even 17 months post stroke I still read it from time to time, just to remind myself of what is going on.
I don't want to sound unkind, but being there for my husband sometimes felt like a thankless task, and if anyone was going to get grumbled at, it would be me! I understand that you sometimes hurt the ones you love, and I think it was the fear, frustration and trauma which made him this way, as it was completely unlike him. It was very tough, and I felt quite lonely, but I realise now, he was just trying to survive, to keep life and limb together, and that took up 99.5% of his time! This balance will change, and only time is the healer. Hang in there, keep posting, and don't give up xxx
Hi Donna, you sound as though you've really got your hands very full, however, if you or one of your children could start to keep a little diary of things that your husband has achieved, you will be surprised at how his journey progresses. I started to keep a food diary, because my husband wasn't eating, and it just morphed into a daily log. It was very repetitive at first, but when I looked back I noticed changes, and it was really helpful as a means of demonstrating progress to my husband when he felt that he was going nowhere!
xx
Hi thankyou,it’s been so good reading these comments, I’ve also felt so alone, I’m feeling right now “ it’s your husband you get on with it “ which I’m happy to do I wouldn’t have it any other way but I do find it all so hard so reading thro ppls experiences is helping to understand more. Thankyou x
Hello Donna and welcome to the Forum.
I live in Durham and I was warned that the Community physio and OT had a huge waiting list. After two weeks I managed to get their number from the Stroke Association link person and told them I was concerned I might be giving my husband the wrong information/exercises etc. I also had taken him to our local Bannatyne (we’re members). The OT squeezed us into her list for a preliminary visit and persuaded the physio do the same. We’d planned a holiday and hadn’t wanted to cancel it. They were obviously concerned ? They must have thought, ‘who is this mad woman taking her husband away 5 weeks after his Stroke, lol!’
Anyway, we got approval to go away but the weather wasn’t good in Portugal that week! Sod’s law. We were then able to slot into their system and I drove him to physio appointments. The OT visited at home. Getting personal contact with them made all the difference, especially when I’d paid out £60 to a private physio one off visit, ☹️
I’ve been very fortunate that John made an amazing recovery so that he was mobile and discharged within six days. However, the Stroke has robbed him of a lot of independence. He can’t drive, has issues with time, plus other things. It is very frustrating for us, the people who love and care for them. Like others have said, being there is very, very important. John is still anxious when I go out on my own and is looking out for me returning. He has needed lots of reassurance and encouragement.
I didn’t use this Forum until November, 20 months after John had his Stroke and wish I’d joined much earlier. I did keep a diary though and constantly reminded him how far he’d come. I know that’s one of the important things others on here advise. Perhaps if you can jot down notes from the beginning and show him how he’s made progress enough to be discharged ,,,could be a starting point? Another special advice is Colin’s ‘smile ‘ recipe? I’m sure he’ll tell you.
well, I might have overtaken Nic in the longest post competition? Hope not! She looks very fierce when her hair is wild, lol!
Take care and look after yourself, too. Join the gang ??
Veronica ? and John
Hi Donna, this site was a huge help and support for me after my husband's stroke. I learned so much, and got a real insight into what he was going through, and suggestions about ways to help. It's also really useful to know that we're all experiencing similar things, it offers some 'normality' to the situation. Whatever you're going through, you suddenly realise that lots of others have been there and come through the bad times, it's reassuring to know that support is always there.
xx
Haha, crazy hair lady! It's actually good to laugh in the face of adversity. My husband has just suffered a very severe gastric episode, he is currently in hospital and having all toilet issues closely monitored. There is an assessment tool called the Bristol Stool Chart - yes really!! Every bathroom in the ward has this (laminated) chart on display to help patients assess their 'output'. So we decided to have some fun with this ... he's modelled some gestures, and facial expressions to accompany the levels on the chart, I'm very tempted to print them and place them onto one of the charts ... just before he leaves. I think this more than meets Colin's instruction to smile!! ?
Oh Nic , that’s so funny and we both laughed. There has been a famine of laughter here this week,,, me being grumpy, and you have broken the spell!
Hope your husband gets better soon. It’s such a worry when more things happen. Our chiropractor has a chart in her loo, too! She is into very healthy everything! ?? It’s right by the seat so if you glance sideways,,,,lol! I’ll have to see if it’s the bristle oops, lol, Bristol one. Take care. Hope school is being caring, too?
?? V&J
Dear Donna
You guys deserve and need a bit of support so do try your local stroke group and medical center for some guidance.
The overall support of stroke survivors is hopeless. We are the cinderella illness and only another SS has any idea what he is going through. My local stroke group, a voluntary group, has one day a week for carers. I have been a couple of times to the sessions for SS and it was like being wrapped in a warm blanket. People who understood and had access to assistance.
There is so much to learn, we need help.
In the meantime this forum usually has some ideas for helping.
Colin
I managed to get social services to come out on Thursday to do an assessment for my husband and also a carers assessment for myself so fingers crossed I might get the help I need, I have looked at a couple of stroke support groups and will be looking to go, thankyou for you help x
Well done, the ball is rolling.
Do try the stroke groups. Usually very enlightening and helpful.