Partners stroke

My partner suffered stroke, would like to talk :(

Hi Cherry Blossom and Welcome. Sorry to hear about your partner's stroke. Whatever is on your mind, we are all here to help.  Let us know how things are with both of you.

He is my soulmate and we are due to marry in September of this year.  Recently lost all 4 of our parents :( We will do this, communication is hard and mobility needs working on, but he is an extremely determined character  :)

You have certainly had a tough time. Losing family or friends is hard enough to deal with and on top of a stroke, more so.  I lost my Mum-in-law and my brother within 18months of each other - both to the same cancer.  When you have a stroke, this is also a stage of grieving, for the person you used to be, and it takes a long while to accept the 'new' you and let go of your grief.  Amongst grief, there is also anger, bitterness (why me?), fear and feeling of hopelessness.  But you will find all these things will turn into determination and a strength to succeed.

You don't mention your ages but the younger and fitter you are when stroke happens, they say the better the recovery is.  I hope you are getting some help with physio etc. Covid is, dare I say it, coming to a close so everything should start to reopen again to get appointments for your him. 

I'm 50 and my partner is 57 x

Hi. I'm 56 and had a stroke when i was 51. I was in hospital for four months and have worked hard on my recovery since then. Still do. The brain has amazing capacity to repair itself. Neuroplasticity is the term you need to research. At first I slept a lot because, I think, my brain needed it. Now i need to get my mobility sorted and my dominant left hand. Recovery is possible but you have to work at it and it takes a long ime. That's what I find.

Thank you for the lovely feedback, Gary is 57, stroke out of the blue, he is very determined though, but sleeps a lot, day 12 xx

My husband suffered a stroke in 2017, aged 60.  He had no risk factors other than he'd had mitral valve heart surgery 2 weeks prior to having the stroke.  

Recovery is a long road, there's no way to let you down gently!! It's also a rocky road, (not the yummy cake variety), it's hard slog. There's no road map, but the people of this site truly saved the day for me - I learnt so much and just couldn't have managed without their knowledge and experience.  So ... it's very early days for you and Gary, but luckily you will have lots of stroke survivors to help you along the way. Getting sleep and rest is vital, and pretty much takes up hours of the day in the initial stages, so don't worry, it's the brain's defence mechanism.  Whilst he's resting his brain can begin it's massive task of re-wiring and re-booting!!  Embrace the sleep!  

Don't want to overwhelm you, so just keep posting and asking for support.  Gary will make progress, he just needs to be patient and kind to himself in these early days.  

Make sure you take care of yourself too, it's very tiring for you and the worry and anxiety takes it toll.  Better days are ahead, we are all cheering you on, and someone will always be here to help.  Take care, stay strong xx

 

That's extremely kind of you, thank you.  He has a wedding to go to on the 20th September (ours) so he says he is determined to do it.  I work in cardiology, so know all about your husband's surgery.  Hope he is doing well. xx

That's a lovely target to aim for - lots of time to get strong, we'll all be very excited for you ??

My husband has recovered well from the heart surgery, (at Papworth), but the stroke was the most devastating thing to happen to him. Neither of us had a clue about stroke, so we just thought he would gradually get better!!  Stroke is a brain injury, so life is never exactly the same again.  Although the brain does an amazing job, it can't return to pre-stroke life.  So be prepared for - sensory overload, fatigue, changes in tastes, emotional fall-out ?.  I'm sorry to give you a list of negatives, Gary may not encounter all of these, but he will certainly experience some of them, and think of a few of his own!!  I just think it's better that you are prepared for some of the gremlins you might meet along the way.  Try to read some of the stories from stroke survivors, they will reassure and comfort you, and help you to realise that you will come out the other side.  I kept (and still keep), a daily diary, it began as food log when my husband wasn't eating and the dietician suggested I kept a record of what he was eating, (half a digestive biscuit and a brazil nut!!).  I knew he would never keep a record, so took it upon myself to record daily events, no matter how small or repetitive, tears, tantrums and triumphs, they're all in the diary!!  It only takes a few minutes, I just keep a folder on my laptop - it's a lovely reminder of how far he's come.  It's settled a few heated arguments too ??!!

My husband returned to work for 3 years after stroke, running his own company, he was at reduced capacity, but battled through.  He now drives, goes for walks, learned to use a chain saw and recently bought himself a puppy, which he's been yearning for since he lost his previous dog.  Once Covid restrictions have eased, we plan to take holidays, and to resume a normal life.  So just hang in there, you still have plenty to look forward to.  You will always find support, and encouragement here ?

Take good care xx 

Hi.

My husband also suffered a stroke, back in December. We are now in the process of putting together a care plan to get him home. I'm feeling very overwhelemed and worried. If anyone has any tips on what to ask during this process or what we are entitled to, please share. 

 

Thanks 

Hi there. Getting support is difficult at a time of Covid and health authorities vary in their provision. My stroke was five years ago, but before I was allowed home I had to come on a home visit with my occupational therapist to determine what aids I would need around the house. Age UK put in hand grips at the top and bottom of the stairs and a seat in the upstairs shower. I was also lent a walking frame and a commode because I had to sleep downstairs for the first three weeks of being home.

When I  got home I had six weeks home visits from the Community Stroke Team who taught me to get up and down stairs, how to cope in the kitchen and a daily exercise regime for my weak arm, hand and leg. After that I was referred back to my stroke hospital for a weekly physiotherapy session which lasted a year. The Stroke Association also sent out an adviser to help with benefit claims etc., my hospital also arranged an appointment with an eye specialist and a neuropsychologist. These appointments took a year to happen. The wait is probably much longer now.

Please be aware that your husband will be very emotional in the first few months of being home...grateful to be there, but angry, confused and frightened. His sleep patterns may also have altered. When I came home, I thought I was going to die and I could be quite angry with my partner at time. Bit by bit, little by little, I improved and can do more than I did on first arriving home, but not as much as I could in my life before stroke.

You might also want to make contact with any support group for carers in your area, even if only for short term support. It can be very lonely caring for a survivor in their first few months home and also very wearing. I wish you all the best.

Dear emma,

its a massive step along the recovery path, getting to go home. Well done to both of you.

in my opinion, its really up to the stroke survivor to lead his recovery. It is impossible for you to lead him. 
 

a key issue is to ensure he can transfer unaided. 
 

you also need to consider your situation. You will not survive if you need to be his carer 24/7. You need breaks. From day one i insisted my wife left the house every day. She loves shopping, so a visit to the local shop, and the town shops and the city shops filled in nicely. You must not be a prisoner. 
 

the rehab team visited my house and organized a perching stool, a shower chair, grab rails, walking stick and no doubt other bits and pieces that i have forgotten about. We share a bedroom immediately next to the the bathroom and a second bedroom two paces away. No stairs. I washed and showered myself. Took all morning to start with, but i could do that without my wife needing to be with me. I could just about make tea, but i dropped the tray first time. Keep me away from carpets !

i had six weeks of daily carers, who included physios etc. they made a big difference. Once the six weeks finished we were on our own. Very scary.

well i think i will resist writing ten thousand workds. Every ss is different. But keep in mind that his limbs etc are not damaged, its just the messaging system that is broken.

best wishes

colin

I'd recommend you get a copy of a book called had a stroke? what now?by Tom Balchin It'll help understand what's happened and what to expect.

My husband had an ITA and 24 hrs later a major stroke, 5 months ago.  He has been home for 8 weeks, and is doing well.  BUT - can anyone tell me if the medical services get involved at all now he is home?  We had brilliant carers for a while - no longer needed - and physios for 6 weeks, now signed off.  But nobody has told us why he had a stroke - there appears to be no follow up, no medical advice, no help.  At times that's OK, yet I am appalled that we are now completely on our own.  Is that usual, normal - is it just Covid - how do I find out what caused the stroke, and how to prevent another?  

Shorty'

I think it is probably just Covid. It is usual to get a discharge paper  stating the cause of the stroke and its impact. When I finished my six weeks home physio I got a summary of my progress. Support varies from health authority to health authority, but when my home support finished I was referred back to my rehab hospital for an hour's physio a week. That lasted for nine months. I then joined a weekly exercise class at our local Life After Stroke Centre (but these are not everywhere)

A copy of your husband's discharge notes should have been sent to your gp. Your gp should also know of any local support available, buty, as I said, these may not be operating because of the pandemic. Some local gyms offer support for stroke survivors, but these can be expensive. Alas, once we are fit enough to go home, we survivors can be forgotten. It might be worth giving the Stroke Association helpline a ring and ask ther or advice.

Hi Shorty, John has shared  his experience with you, and no doubt you will receive other replies.  

Personally, we have been very disappointed by the lack of support for stroke survivors, once the inital 'package' comes to an end.  My husband would not have seen a stroke consultant if I hadn't phoned and badgered until I secured an appointment. His medication has never been reviewed ??.  You may be fortunate and find that your local health authority offers support, but I suspect you will have to keep pushing to get noticed, (that seems to be your experience at the moment).  Your husband is lucky to have you to fight his corner, and sadly many people are struggling to navigate this on their own.  

Stay strong and continue to seek support, sadly, those who shout loudest tend to be noticed.  It's not a nice thing to say, but I think many NHS departments are so stretched that they can't deliver the care they would want to.  Very best of luck, don't give up, ask for what you need - (top tip:  sometimes I phoned the stroke team and sobbed until someone took notice of me!!)

Stay strong , Nic xx

I had a bilateral cereballar infarction, seven months ago. They ran as many tests as they could and still no cause. Sometimes they don't or can't find one. They then treat for symptoms only. 

Thanks Nic.  I am not surprised by what you say - it is true in a lot of life surely!  I appreciate you replying to me, and reinforcing a message I am getting from good friends and my own family, about staying strong and looking out for myself as well as my husband. x

Sorry to hear about your own stroke - and your experience.  Not entirely sure it helps to know what caused the stroke, but it does feel a bit like navigating fog.  Cheers x