This is my first post. I hope it’s in the right place.
My ex husband had an ischaemic stroke which converted to a haemorrhagic stroke. He then had a craniotomy. This was 6 weeks ago
His sister who he is not particularly close to, took over as nok and I only found all of the above out 8 hours before he had the craniotomy. She asked did I know what his wishes were before the craniotomy and I advised I did and she chose to ignore them anyway.
It’s has been 6 weeks and my ex husband is paralysed on the right hand side, cannot follow commands, cannot speak, is incontinent, is hardly eating and wasting away. He is in there but does not understand. He Will have 4 moods in an hour with the tears being the hardest for me as I feel for him so much. I have no clue what or how he is feeling
Since all of this happened I have used all of my leave at work to be there for him. To let Drs, therapists and nurses know who he is and what he likes and dislikes. Bring anything they need for him. Support him and let him know I am there. His sister and mother will visit for one hour every Sunday and that is it. They made the decision that has left him like this and then have just left him. I feel so sad thinking of him just laying there 24 hours a day and I am literally killing myself physically, mentally and financially to be there for him as much as I can. My life as I know it has been non existent for the last 6 weeks and I am struggling.
Can anyone offer advice on how I keep going or if anyone has been through what he has and have made some sort of recovery let me know
I want to be there for him as I cannot switch off to any of it but it is affecting my mental health a lot anger for his family and extended family who do not bother and sadness for seeing him in a portion he would never want to be in.
Hi, you certainly are going through a tough time. Family and friends can deal with the shock of a stroke in different ways. I have experienced this first hand while in recovery, try not to judge others harshly for their reaction and give your ex all the support you can manage.
If you are his only support he is going to need you at your best version everyday. It’s now about his recovery and supporting him on the way to improvements in his life. They maybe small improvements or even a sudden improvement you don’t expect. There maybe no improvement at all, 6weeks is very early in recovery, for quite some time.
Please look after yourself first of all, that way you can support him properly. You can’t change what has happened but you can maybe help change the outcome.
Thank you for your response. I didn’t mean to come across as judgemental. I think it’s more exhaustion and frustration.
While no one else is visiting I feel like I can’t leave him alone lying there with no visitors. I am exhausted. I don’t know how to switch off and not go.
I also work full time and to be honest for the last 6 weeks I don’t know if I’m coming or going.
I don’t know what to do for the best. If I don’t go I worry and then I do go and get home exhausted.
@Boyce73 hi & welcome to the community. So sorry to hear of your ex-husbands stroke & the position you now find yourself in. You are doing amazing. Please remember that.
You can’t continue as you are though especially as this could be long term. Right now perhaps you need to take some time out of work to rest up yourself. Perhaps there is a compromise to be had in relation to visiting and maybe go every other day or even every 3rd day.
Your ex will need plenty of rest at this stage too as his brain will be trying to do it’s repair work. Visitors can be exhausting although very welcome at the same time.
I don’t know how well you know his family but are you able to talk to them? Let them know how exhausted you are & maybe have some sort of rota for visiting. Some people find they can’t cope with visiting people in your ex’s position.
Remember if you’re exhausted you can’t help him at all. At this stage the drs & nurses will be doing all they can for him and now might be the time to let that happen & ease back yourself. There will be plenty to do later.
Thank you so much for your kind words. They are really appreciated.
I do speak with his family however they don’t have the time to visit is their answer. I don’t want to be bitter and maybe they have their reasons, but I know time is not one of them.
I am going to try and go less, it’s learning to switch off that is the hard part for me.
The shock of stroke can rattle everyone when it strikes, but people soon recover from the shock and return to their daily lives. Some people may feel there is little they can do, and so leave it to the doctors and nurses until they figure out a way to contribute.
I had a stroke during lockdown and could have no visitors. To be fair, at this time, medical staff care and rest may be enough. I know that I was so foggy and in my own troubled world that I don’t think friends or family visiting would have changed any of that. It’s warming and loving of course, but it doesn’t have to be too frequent, there’s a lot to process. The next big step is being discharged, and that will be the transitional phase from patient to out-patient, perhaps the most challenging. So, maybe reserve your finances and energy for that phase. Ask a nurse to set up a brief video chat if possible, if you want to check in.
Unfortunately my ex husband has had severe damage to his middle and left side of his brain. The consultant thinks he will be left with permanent physical disability, will probably not speak again and will need 24 hour care.
He will go from the hospital to rehab and then to a home with 24 hour care.
Hello @Boyce73 i had an haemorragic stroke and had a craniectomy followed by a cranioplasty I was in PDOC and unresponsive for 2 months but I’m now fully cognisant. I couldn’t speak not because of brain damage or aphasia but because I was fitted with a tracheostomy for mechanical ventilation I wasn’t given a choice about eating and was fitted with a PEG (percutaneous endoscopy tube to be fed liquid food.id be so happy to answer any questions.i have 3 daughters and i signalled that i wanted to write so they bought me a whiteboard and i began communicating by writing. This helped my brain rewire and heal and this is why I’m now cognisant.the fact that he’s even alive is a miracle ⅓ of haemorrhagic stroke patients die.please feel free to ask any questions I’ll be alerted when you tag my user name (michmm) Mitch all the very best to you both.
This gives me hope. We have tried the writing but so far it’s too tiny to work out.
I see him in there. He hugs with his good arm and will give a kiss. He can laugh and cry as well as have horrendous any moments. This is all understandable.
He has had his ng tube out as he can swallow small soft lumpy food but unfortunately he is not eating enough and I fear that going back in. I know they mentioned a peg before. When the ng is in he won’t eat at all. I imagine it will be very uncomfortable.
Aye, that is kind and supportive of you. @Mich-mm is an invaluable resource for this kind of scenario as she has made astounding progress and is very conscious of the steps she has taken and what it has involved, so I do recommend picking her brain.
My stroke @Boyce73 was 5 years ago may 2021,I spent most of those 5 years in a rehab hospital NOT receiving much rehab,the gains I’ve made have beeen since I left the rehab hospital I now eat normally and can just about hold a conversation when I’m not understood I type on an iPad using the text to speech facility.many around me assume I’m stupid or have cognitive decline.it’s very frustrating and I fight this every single day. I was moved from the rehab hospital to a nursing home.at the nursing home I fell under the care of a NHS community SALT who understood my desire to eat. Organised a barium swallow X-ray which deemed me fit to swallow I already knew everything was intact because at the rehab hospital I’d had a FEES endoscopy swallow exam.even though I hadn’t eaten in 5 years my chew and tongue muscles quickly reappeared.I’d happily answer any other questions you have my haemorrhage was on the right so I had hemiparalysis down my left because the brain is of course wired contralaterly left controls right and vv.
Firstly, hello and welcome to the forum. It’s nice to meet you albeit under difficult circumstances.
I note and I am pleased to see many responses to your original post and I can certainly agree or put it another way not disagree with what has been said.
The more time I spend on this forum, the harder I find to offer advice as I now find myself asking questions to try to fill in missing gaps. The reason for this, is at personally, I find it difficult to comment or the comments are restricted by the amount of information available. I now find that things are rarely as simple as they might first appear and this is because there are so many variables that affect or that contribute to making the full picture.
In your case, I feel I don’t have enough information to work with to offer a definitive response that would address the concerns you have.
I will therefore, ask questions to seek clarification and offer suggestions on things as I see them based on what you have said so far.
To start with, this to me is a complicated case.
Why?
As I see it, we are talking about your ex.
As we are talking about your ex, I would then have to ask how much input you would have into his affairs.
Legally, and I am not an expert, but if he is unable to make his own decisions or express his wishes then I don’t think it will be easy for you to represent him unless he has put in place a lasting power of attorney (LPA) or has a will in place. His next of kin is his family (you say his sister and so I would think she would be the person who the doctors or legal would turn to if they needed to). This may not be something you like, but unfortunately this is how I believe it would work.
This is the tricky one - if he is not understanding then how is he communicating?
On this basis, the LPA or the next of kin would likely be consulted.
The medical team will do their best as is their duty, but who will they consult if they want to know what the patient would like to do?
This will certainly help the doctors and they will likely use it as guidance for sure.
Again, with you being your husbands ex, I don’t know how involved you can be in his on-going care unless he himself as expressed this in an LPA or is able to communicate this now.
If he does not have the mental capacity then the Mental Health act comes into play and this is where you and the family would have to work together to come up with a solution that is best for your ex. Even then, unless there is an LPA, the law will look at it as per the Mental Health Act - this will be communicated to you/family/patient by the doctors.
I am sorry I am muddying the waters and possibly not offering much comfort, but having been through similar though in my opinion less complex situation, I feel things may be difficult for some time yet.
If the consultant is suggesting this, then you and the family are going to have to work hard to get the care you feel your ex deserves.
I am sorry but I don’t want to give you false hope and I really hope that I have misunderstood how much say you have in the future care of your ex.
To finish with, I will restate what I said from the start which is to say I note and I am pleased to see many responses to your original post and I can certainly agree or put it another way not disagree with what has been said.
Anything this possible and I wish you and your ex all the best.
Thank you for your response. To clear things up my ex and I are very good friends and have been for 40 years. Having been married to him we of course discussed our wishes should certain things happen.
He doesn’t have an LPA and I don’t want to be the one to make any decisions anyway.
It’s been frustrating as up until this very point I have been the one liaising with the drs, nurses and therapists. I am the one who has to update his family
I’ve had a full and frank conversation with his consultant and we are both only interested in his best interests. the consultant takes my thoughts on what I know seriously.
All I care about is him and come to support him. The drs stressed from the very beginning how important emotional support is for him from family and friends. Hence my visiting as much as I can.
@Boyce73 i should have told you that a doctor told my daughters that I’d probably spend the rest of my life starring at the ceiling.well that doctor can f*** off because I’m fully cognisant and in private physio sessions have taken a few steps.i still have the PEG in place but no longer use it as I’m eating normally.it is dehumanising making me feel like a device that needs charging.so if you can avoid it,do.theres a lady on here that recently posted that her husband pulled his PEG out and I can understand why.as I said i wasn’t given a choice.i do recognise that to some degree it kept me alive but i suffered IBS and acid reflux because i wasn’t eating and lost about 100lbs that’s normal PEG fed people loose about 20lbs a day.
I disagree the language centres are in the frontal lobe and in any case read up about neuroplasticity the amazing abilityof the brain to heal itself by re-routing neuronal pathways.yes I am determined and it’s the love and encouragement of my daughters that has got me to where I am today.a hug holding my hand.Etc, is what rewired my brain.
From all you have said, I can now categorically state that based on what I have seen, have learned and in my opinion there is absolutely no reason why your ex cannot make a great recovery. That is the easy part
How this will be achieved is the not so easy part and what happens next will be down to a battle of wills. With you to encourage and support your ex and with you to advocate for him, he will be well on the road the road to recovery.
He will need
Help - form you, his family, other friends and the healthcare professionals. But from what you have said, I feel you will mostly be doing the leading and that will take a lot of time and effort
Willpower and desire to recover. Strength to carry on when things don’t appear to work. This will be down to your ex and partly down to you to keep him strong
Various resources including healthcare professional access and support e.g. from physiotherapists, occupational therapists, Speech and Language therapists etc.
Specialist equipment/aids
Time - this is very important to understand. There are no time limits or specific dates when things can or will be achieved i.e. things will happen when they happen and these will be determined by outside factors. Don’t get obsessed with things not happening after a week or month or a year. Keep doing what have to do and things will happen when they are ready to happen. Time and effort - key factors.
Rest and recuperation - very important. Make sure plenty of rest and recuperation is built into the care schedule. The brian and body will require plenty of rest and in fact it is during the rest period when a lot of recovery will takes place. So your ex may want to sleep a lot - this should be taken as a good sign and should be encouraged.
A pasitive frame of mind - you and your ex-will hear much, some from experts, some from survivors including many on this forum. Most will be encouraging, but occasionally it may not. Stay positive, know your (your ex’s) potential and allow yourself time to breathe. This is not a race and there are no limits.
Overcoming barriers – many barriers will pop-up. You will have to learn to navigate them or overcome them. It can be done and has been done - there are many on this forum who are doing this or have done it. You can tap into their knowledge and experiences to help guide you - but guidance is all it will be. It may work for you, or it may not. You will have to find what works for you.
There is more, but this is enought o get you going.
Think again - this is not all you can care about. First and foremost, you have to care about yourself. If you fail to care for yourself then you will not be able to care and support your ex. Your health and wellbeing has to take at least equal if not more care and attention than that given to your ex.
I don’t want to give you false hope, but I believe from what you have said, you have what it takes to help your ex as he recovers from stroke.
Welcome to the community, I’m sorry to hear about ex husbands stroke. It sounds like you’re going to be a great help for his recovery. I hope you’ll find this space helpful as you navigate through these first difficult months. There is a wealth of knowledge here for you to tap into.
We also have our Stroke Support Helpline:0303 3033 100. They can help with what should be happening and point you in the right direction with things that may come up over time. Do reach out to them if you’re struggling too as they can just listen if you need someone to talk to.
As others have said, it’s so important to look after yourself throughout this too. It’s easy to focus so much on the other person and neglect yourself so please do make time for yourself too.
If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Your knowledge of who your ex-husband is and what he would want is relevant and important. You are not just a bystander. If you have not already, you might consider asking to speak to the consultant in charge or the hospital’s Patient Advice and Liaison Service (PALS). You can explain that you have information about his previously expressed wishes that you believe is not being considered. This is not about fighting his sister; it is about ensuring his voice is heard through you.
You cannot control his recovery. But you can control how you advocate for him, and you can control how you protect yourself while doing it. The best thing you can do for him is to stay well enough to be there, and that means accepting that you need help, too. Eat well, nourish, sleep, stay well, stay strong and accept all help that comes your way.
