Husband has had a Stroke

Hi.

I'm new to this forum and posting online, having never done it before. My husband and father to our two young children had a stroke and major PE 15 months ago (doesn't seem possible that it can be that long ago!). He had so many complications, craniotomy, cardiac arrest, dialysis. It's frankly amazing that he survived it all and he so very nearly didn't.

He's still not able to live at home though due to his care needs and is in a rehab unit 30 miles away from us. He has hemiplegia on the left side and also has severe right leg weakness, a result of his PE. He's partially sighted with complete loss of left periferal vision and severe left neglect. He is really strong mentally though to the point where everyone thinks mentally he hasn't been affected. But he has, I can see the differences.

We are about to build an extension to get him home and want to get a WAV to give us mobility and more independence. But I'm so worried about what life will be like and what will he actually be able to do. His vision/neglect is so bad he can't read or use a computer at the moment. His passion was cars, but his license has been revoked and he'll never drive again as optometrists don't expect his vision to improve now.

I'm finding everything so hard, nothing is straight forward and there seem to be problems at every turn. Feels like two steps forward, one step back all the time. Like can I find a WAV to take 58" head room (he's tall and long limbed) and fit the family/equipment in without bankrupting us. (It didn't pay us to work hard and save for our children's future as just means now we're not eligible for any help and have to fund everything ourselves).

I have to also help the children through it, our 10 year old was really close to his dad and is struggling. Lots of anger directed at me. Then there's secondary school decisions this month and am really feeling the weight of having to do everything alone and essentially losing my partner, despite the fact that he didn't die.

Sorry it's not a very upbeat first post. Couldn't seem to stop once I started typing!

Hi HuntD, What a devastating experience you have all been through. There are other people on this site who have been in a similar situation and will be better able to advise you. I m 73 and suffered my stroke 18 months ago. At first I couldn't walk, use my left hand or focus on anything. I longed to be home, just surrounded by the people and things I loved, so coming home was a great boost to my mood and ability to recover. You say he is strong mentally and that is good. To achieve any degree of recovery needs grit and determination. Although the prognosis does not look good, improvement can take years. Just being home and being able to look into the garden was a blessing to me at first. After 18 months I can do more, but never forget the first months of being in that strange world of stroke recovery.

Now regarding your ten year old..I am a retired teacher and many years ago, I taught a teenage girl whose dad became terminally ill with a brain tumour and told his family in order to prepare them. Immediately, she developed anger issues and began to neglect her A level studies. When I talked to her I asked her what her dad would want her to do and she said he would want her to study hard and be a success. Her behaviour improved from then on. So it might be worth referring to Dad in any chats with him so that he still sees Dad as part of his life.

Do come on this forum whenever you need help and support. My thoughts are with you.

Dear D
So sorry to hear of your husbands terrible stroke. You have both done rather well to reach this stage, when you are already considering options. You must be two strong willed people.
On the subject of his mental side, I do suffer from endless assumptions that I am getting back to how I was. I am not. I never will, its an impossibility. I have often talked about "new Colin" and this is exactly what is happening, I am a new and different person. To emphasise this, I am a Chartered accountant, retired, with specialization in personal tax, pensions etc and so I was a good bet for voluntary work. I have struggled to find how to fit in to society and I certainly cant do any accountants type work. I now make the tea. Nothing wrong with that and I am so pleased I can do something useful. But the change in me is huge. So I am certain you are right about hubby. His physical side will improve, as his brain gets control on more and more of his functions, but his mental or cognitive side will not return to previous. Might be better than before, but it will be different.
From what I have seen, I would want to be very wary of moving back home. For hubby, going home might be an association with getting better or getting back to "normal" and that's not going to happen. Personally, I have given many considerations to moving from home in to a care home. I still need peace, quiet, and little pressure. I watch my wife get more and more angry, fractious and more and more run down. And I do not have a fraction of the disabilities your hubby is struggling through. I can manage unaided for a few days. Main problem is that it takes a week to do what I used to do in one day. I am lucky that I can do so much.
If you both want him home then your strength of feelings will no doubt carry you through, but otherwise he is probably better off in the nursing home.
I insist my wife has at least two hours every day to herself. Plus a few days every month. This works, but as soon as family arrive then it falls apart. So please be careful what you take on. I am sure it is very hard to take the children 30 miles to visit Dad. But you then get a break. If he is home then its 24/7.

This site is great. So much help, so many tips. One function is for letting off steam. If we mention that we are letting off steam then that's great. Hope it helped a bit.

If you want to ask anything, we are here for you. I had a small and very straight forward stroke, so I can see some things more clearly. Others have their own set of issues and can contribute their experiences. No two strokes are the same.
Best wishes
Colin

Have you investigated what benefits you can claim?
PIP is non-means tested and is a gateway to other benefits including Motability who can helpwith a WAV.ESA is a means tested out-of-work benefit.There are several websites which can helpwith benefit entitlement or go to CAB or a Disability Rights group.
When your husband comes home make sure you get support so that you have some time to yourself.

Thank you so much for your messages and taking the time to reply. It was really helpful to read the different perspectives and how other people have felt. It made me consider things I wouldn't have thought of.

I didn't realise how good it would feel to hear from other stroke survivors. Family and friends are all very supportive but they don't 'get it' in the same way.

I will certainly try your tip John with my son. Thank you.

(It didn't pay us to work hard and save for our children's future as just means now we're not eligible for any help and have to fund everything ourselves).

This is the most frustrating situation to be in.....having just enough saved for a rainy day etc,but too much so that you are above the miserable threshold that disqualifies you from any reasonable assistance.
I know the feeling........

Really sorry to hear this HuntD.. it is really hard I know, especially with having young children.My dad had a severe stroke end of May and went through rehab. However, there was not much progress. We just have to keep faith and be positive. Fingers crossed that they make progress and we can start living our lives again soon. Recovery can be very slow. Frustrating for us but also frustrating for them!

I am hoping that people do not consider me being 'iffy' by asking if they could possibly not post capitols such as WAV, PE etc without saying what they actually stand for as I do not understand - they may be something that I can relate to or not. Sorry.

Hi peecee,

Not 'iffy' at all. WAV is wheelchair accessible vehicle and PE is pulmonary embolism.

Hi HuntD, my partner suffered a stroke 6 weeks ago. He is 46. We have young children too. 1 of our sons has autism with severe anxiety. My partner was his carer and took him to and from school whilst I worked full time in the days and my partner worked in the evenings. At the moment I can't get my son to go to school and i am trying to home school him, visit my partner and look after our youngest son who is 9. It is crap.im a bit lost. My partner is making improvements slowly so trying to reassure the children that he is getting better. I really feel for you, I have no real helpful advice to give you but wanted to send you love. Hope you are looking after yourself whilst looking after yourself ( chuckling at myself as i wrote that.)

Pages

Category

Share

Charity information

Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR.

Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805), Isle of Man (No 945) Jersey (NPO 369).