Sharing my husband's story (and mine!) - am I a terrible person?!

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Hello,

I’m Imogen and I’m new here even though my husband suffered a severe stroke after undergoing massive 12 hour heart surgery (which actually went well!) at the beginning of April. He’s in a level 1/2a rehab facility 90 mins drive from me and I’d love to hear from others who are also dealing with the fall-out.

I’m trying to hold a full-time job (we’re both in our early 50s) whilst sorting his out - he was self-employed, so I had to do his tax return & accounts, plus of course, remove him from the register (he was a driving instructor, that ain’t ever happening again!)

I’m just exhausted with the non-stop round of admin of house and mortgage, insurances, car stuff, selling things, all his medical appointments (which still come to me despite him being in a hospital!) dealing with local councils trying to get a blue badge (an uphill struggle!) doing his washing, sooo much DIY, buying modifications for the car, house, looking into home rehab etc etc.

I’m also wondering how my husband seems to be getting worse, so having to advocate for him and trying to work out how on earth he can come home in 2 months when he’s still in a wheelchair with paralysis on his dominant side, severe apraxia and aphasia, plus actually recovering from a major heart op which left him in ICU for 2 weeks, which everyone seems to have forgotten about.

Am I a terrible wife for actually being really worried about him coming home and kind of not looking forward to it? It’s been just me for these past few months and I know life will be turned upside down - I’d love to hear how others coped when their loved ones came home as I’m struggling somewhat with how it’s all going to pan out!

Sorry, it feels like a Friday downer, but I wanted to reach out to the community and become involved as I’ve NO IDEA what’s going to happen in a few weeks time and I’m dreading it!

Maybe I need to enjoy this time before the real work starts (who’s remotely joining me in a glass of wine later?!!)

Cheers all, and take care
Imogen

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It’s hard on both, Imogen, but remember you’re in this together.

Two tears ago, (I meant years!) when I was in rehab I asked my wife to consider divorcing me lest I drag her down. She answered, no chance, and that if our roles were reversed, I would do likewise. It’s time to be strong. With you he has a far better chance. You need to enjoy every minute of every day, now and in the future.

Good luck, well done so far, ciao, Roland

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Awww, bless you Roland - I hope you’re BOTH doing strong! :pray: :muscle:

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Hi @Imogen

Sorry to hear your very sad tale. Now you are here You are very welcome and you should know you are not the first on this road and many of the travellers ahead of you have documented their stories in their posts on this forum.

By searching with the magnifying glass above you will find them and be able to read progress over many months. You’re also not the first to have doubts about your feelings about the future relationship - for that I suggest ‘be strong’ let time be a healer

another thing to say is that We all start out scared of the unknown and in the vast majority of cases by small steps we come to understand our new normal and become first #StrokeWarriors and then #StrokeThrivers (both of the survivor and all those around them)

You might find these three or four minutes of video useful click the blue text

Also the thread we collaborated to write

You should start looking for support groups for you and talking to your GP, social services, The stroke association stroke helpline and looking at the map on Map of local support groups | Stroke Association for support groups.

They will help you deal with emotional, financial, administrative, practical day today, house adaptations, DVLA and all the myriad other administriva weighing you down :frowning:

I’ll definitely join you in a rasing a class later but mine may contain alcohol-free beer (if I’m lucky my wife will let me have the remaining quarter of a bottle of red from last night!)

I’ll have a hunt round for some of the threads that contain other people’s stories - because my ability to navigate here is probably more practised than yours - out by using the magnifying glass above to search “my husband/ my wife/ my partner/ my mother/ mum had a stroke” You should find to give you extra clues about useful searches and then plenty of reading of other people’s experiences

Caio
Simon

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Thanks for the super helpful reply! Yes, I suspect it’s a behemoth of a site - I’ll make sure to have a good old read and meet you all remotely on your journeys.
Chin chin!
:pray: :superhero:

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You might also want to join us then on a Thursday afternoon details here

Weekly Zoom Online ‘cafe’ (also Carers)

Caio
Simon

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@Imogen Hi & welcome to the community. That’s a lot that you are trying to deal with all on your own. Do you have anyone that can help? Even if the help is with something like housework so that it frees up time for you to do other stuff.

It probably doesn’t seem like it right now but it will get better. Perhaps prioritise things that really can’t wait & leave other things a bit longer.

I would add that you aren’t a bad person for wanting a break from it all & worrying about him being at home. I’d say it’s the exact opposite as you want him to be safe. It’s vital that you have some time out for you too. Perhaps you could video call him rather than visit as often…90 minutes is a long way.

Could you get the dr to sign you off work for a bit? It’s not unusual for that to happen. If you continue at that pace you’ll be poorly & have no choice anyway.

It isn’t unusual for people to be discharged home who are wheelchair bound & paralysed on one side. You need to make sure the appropriate aids / adjustments ate in place first though. Speak to an OT / physio at the rehab place & also your local council adult social services.

It won’t be easy having him home & you’ll have to adjust to a new routine but you will work it out. Take any help you are offered even if that is just a friend or neighbour sitting with him whilst you pop out for a coffee.

Good luck & hope everything gets easier gor you soon.

Ann x

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[edit - found maybe better links Although about mum not partner]
So as not to overwhelm you because there are many threads here but here are two

If you use the magnifying glass and in the search field type an at sign @ and then the beginning of either of the above threads authors screen name the software will autocomplete and it will search for posts by those people so you can read more of their stories - If you need help with the navigation reach out :slight_smile:

Also have a look at
40 things

Caio
Simon

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Hi Ann,

Thank you for your words of support and advice. I have good pals near by, but there’s a limit! :smile:
I DO feel obliged to visit as I collect his washing (and then return it the next day) so that’s my weekend’s always sorted :rofl:
I weirdly enjoy my job, and I now really need to keep it as we’ve gone down to just my income, they’re being really good, but I’ll see what level of care he needs when he comes home as I have to commute - all the fun of the working life!
Have a wonderful weekend
x

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Hi Imogen,

There is a limit but you often find that people are more willing to help than we think. I am 2 1/2 years post stroke & I still have help from friends & family. I buy them flowers now & again to say thank you but that’s my conscience rather than anything they expect.

I understand the work thing but a couple of weeks out might be just the tonic you need. When he gets home you should be able to apply for PIP for your husband & that will help finances a bit. There may be other things he can claim too but it will depend on many things. CAB website has a calculator you can use to see what you might be entitled to. New style ESA for example isn’t means tested but NI contributions based.

Could someone else take his washing back occasionally. Gives you a break & he gets to see other people too.

All just ideas. I’m sure it’ll work out ok. Things usually do.

Have a good weekend too.

Ann x

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Hi Imogen and a big welcome to this forum. Sorry to hear of your husband’s stroke and the struggles you are facing. Firstly I would just like to say your are definitely not a terrible wife. You are just trying to keep everything ticking over whilst you deal with the trauma of your husband’s stroke. I am speaking as a stroke survivor but I know how worried my husband was when I finally got a discharge date after spending 12 weeks in a rehab unit.

I remember doing a home visit with a PT and OT, who went through the house and advised us of any adaptions that thought would useful and then our council came round and made the necessary changes (grab rails in the shower room and handrail on the stairs).

I’m not sure who was more nervous about me coming home, my husband or me !!.

My husband often says he wished he known then what he knows now, and he could have seen how well we have adapted and how much we have progressed. I am 7years post stroke following a hemorrhagic stroke which paralysed my left side and although I still use a wheelchair on occasions, we are still enjoying life and travelling abroad and socialising regularly with family and friends. It hasn’t been easy but things do improve and you learn to adapt. You are in this together and you will have times when things get tough but be good to each other and take good care of yourself.

I wish you both well and hope things get easier soon.

Regards Sue

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Hi @Imogen - I’m replying not as a stroke survivor (which I am) but as the partner to someone who has been ill for the last two years.
My partner of 40 years has required a fair bit of looking after over the past two years; he had a carotid endarterectomy in 2022, then started with cardiac problems, culminating in a double heart bypass a few weeks ago. Our situation isn’t as challenging as I imagine yours is, but it’s been bloody hard work (am I allowed to say that?).
I completely understand what you said about being worried about him coming home. I was terrified bringing my partner home from his latest hospital stay. What if something went wrong and I couldn’t get help quickly enough? How would I manage to support him properly? And yes I admit, what about my life and the things I normally do?
I also understand your concerns about your relationship. Ours changed when I had my stroke and subsequently retired. It’s changing again now because of his illness and retirement. If I’m truthful I am still concerned about it all but we’ve weathered rough patches before and I believe we will come through it.
As @Mrs5K said, things normally work out and they are doing for us. I’m sure they will for you too. You’re stronger than you think and expressing (very understandable) reservations doesn’t detract from that.
Very best wishes.

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Hi Imogen
Sorry to hear what you are going though, tough times indeed.
My husband had a major stroke last October which left him with no movement on his dominant side, severe aphasia and a dose of dyspraxia.
He left hospital after 12 weeks and I was so happy to get him home but then you start thinking of all the things you will need to get sorted.
I was fortunate to be able to work from home for 3 months after he came home.
Trying to look after someone that literally can’t do anything; can’t move and can’t speak , along with a full time job, with house issues and car issues to deal with (this was his domain). Having to make all of the decisions can be so mentally draining too. It was the darkest winter I have ever faced. Its great to have a good network of friends and family but when you shut that door you are on your own!
Many issues happened along the way BUT today I can say that he now can walk short distances with a quad stick and can make himself understood. I have returned to work and life is getting easier. Still a long journey ahead of us but i can see how much he has improved and we will keep pushing to get our lives back again.
Keep the faith, it will come good!.
Take care
Jan

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Hi @Imogen and welcome to the forum and sorry for your need to join us. And personally, I’d say that makes you a good wife :wink: It’s natural to be concerned…for you both! It’s the fear of the unknown and so we do tend to catastrophise as a result. And I’ll bet your husband will lay in his hospital bed with all the same worries and fears. Heck, I can remember having similar fears 24 years ago at the thought of leaving hospital and coming home with our first new born baby. Its natural, its human nature, so don’t ever feel bad about it. But having aphasia and apraxia makes it so much harder for your husband though, as he can’t ask the multitude of questions he may have. Don’t look at the whole mountain, just look at the path right in front of you. One day at a time.

It’ll take a few weeks but you will soon settle in to a new kind of norm. And hopefully he will come home with a package of care support for you to fall back on while you do settle in.

In the mean time don’t be afraid to take some time out for yourself, and don’t feel guilty to take a day off from hospital visits if you need that break. You need to look after you too :wink:

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Thank you so much everyone for your words - all great advice! His slightly tiresome cousin visited him and took him to the pub (unauthorised!) and gave him some beer as she thought low alcohol would be “OK” (he’s on strict no-alcohol due to his medication cocktail which she did know) - he’s now on monitoring as he started having “episodes” - hey ho, more stuff to deal with!

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If he likes his beer there is a thread where we have been sharing decent low and no alcohol beers.

There are some very good alcohol free

See Low and no alcohol worth considering?

Caio
Simon

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Cheers Simon - just added to that chat - Erdinger beer and Freeglider for the gins! This forum is AMAZING - sooo many pathways, thanks for the guidance.

Imogen

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It’s the community that at makes it

:slight_smile:

They give time & care without reward :slight_smile: or recognition

Caio
Simon

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Hello @Imogen, and welcome to this safe place and fabulous community.

You’ve already had lots of good suggestions. The only thing I would like to add is that the best thing you can do is to ask for help from anywhere and everywhere.

For example, your local Citizen’s Advice Bureau can help you chase your blue badge, and while you’re talking to them, tell them everything about your situation and ask what other help you are entitled to - you might be surprised what they can do, or point you towards.

Ask for help with respite care. If you’re worried about well-meaning family and friends mistakenly sabotaging your husband’s care, then search for professional respite care. You are entitled to a break yourself.

Ask for help for short spells too - friends or neighbours who will sit with your husband for an hour or so while you get well-deserved break to do your own stuff, whether that is shopping, taking part in a regular activity, meeting friends or whatever.

Ask for help even if you don’t know what help to ask for. I asked here and in other groups for suggestions for “anything I might not have thought of” and got all sorts of useful suggestions that I hadn’t even considered.

I’ll join you for a drink, and also being alcohol-free I have spent time researching “grown up soft drinks”. My current favourites are Aromatic tonic water (FeverTree), and Rasperry flavoured Kombucha :smiley:

Best wishes to you, and good luck.
Madeleine

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@Imogen welcome to the group, sorry you have had cause to join this ever growing group. when you next visit your husband, ask what care package they will be supplying on his discharge. speak with your gp for help as well, mine have been fantastic since my stroke 4.5 years ago. also get InTouch with your local councils social care team, they can offer home physio, bathrooms adaptions and help with financials. hope this helps. good luck, keep popping back and always ask questions, we are a friendly group and in most part can give you answers.

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