Desperate Times: Today is day 207 since my beloved... - Headway

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Desperate Times

123Bereft
123Bereft

Today is day 207 since my beloved partner's first surgery (and me being without him) and I just need some encouragement. I have thought for a long time that he is unable to understand anything, he has aphasia and no right side movement following his stroke, now his rehab place are saying the same, he has been there two and a half months. How do you work with someone who has no understanding? I'm sure I am repeating myself. I feel like this means my soul mate, who is only 48, will never come back to me, mentally or physically. I'm still tearful every day. Everyone has said the road is very long and the steps are tiny but he isn't making any progress at the moment and no visits and very distressing facetimes are not helping either of us.

22 Replies

Just an idea, I know nothing. Have been looking into hemispheral issues, the working brain and the being brain. Most people's working brain is the left hemisphere, loss of function here leads to loss of right side movement. there may be some kind of connection here. If the right hemisphere is working then world perception and function is different. Has anyone discussed these kinds of things with you. It may be an idea to get a wider view. The book 'my stroke of insight' written by Jill Bolte Taylor describes a left hemisphere stroke, she is a neuroscientist and had a stroke and could describe what was happening to her and her brain. It would depend on where the bleed took place and the extent of the bleed and what areas of the brain were affected. She fully recovered her functions after 8 years.

My experience is PCS and I know nothing of stroke except a few shared symptoms. I found and many other people find that no one really understands the actual issues and approach these things in a general rather than specific way. It may be worth informing yourself a little wider to try and see a different view point to the situation.

I read your post and I feel for you. The above is just a few ideas.

123Bereft
123Bereft in reply to pinkvision

I have this book and I've read it. Thank you for your reply and thoughts. Feeling really low right now.

pinkvision
pinkvision in reply to 123Bereft

Read the post below yours, it's quite inspirational.

123Bereft
123Bereft in reply to pinkvision

Who is it by?

cat3
cat3 in reply to 123Bereft

Please read ored13's posting titled 'Quietly Hopeful' (immediately beneath your own). Like Pinkvision I find it inspiring .......hope you do too. Hang in there m'love,,,, x

123Bereft
123Bereft in reply to cat3

I'm nearly 7 months in, my partner is fed through a tube, pees through a catheter and wears an adult diaper, he can hold his head up and sit in a chair for a while, he doesn't know what simple objects are, like a comb or a ball or even a cup. I'm finding it very difficult to be inspired. I'm trying to be positive but I'm battling now with depression. There's nothing in my present that gives me hope for the future. Sorry for the miserable post, it's how I feel.

cat3
cat3 in reply to 123Bereft

Have you talked with your GP ? This is probably the most difficult time in your life and perhaps medication or counselling (or both) would lift your mood and reduce the stress, if only until lockdown eases.

The fact you can't see your man in person is a dreadful torment on top of everything else, so please use all available help to protect your mental health. x

123Bereft
123Bereft in reply to cat3

I have an appt with a counsellor on Friday, I agree with you cat, but no amount of pills or counselling is going to change my situation x

cat3
cat3 in reply to 123Bereft

No, absolutely not ! ......but (& I'll keep this brief) after a long history of depression SSRIs kept me going despite domestic violence, divorce, meningitis, breast cancer and close bereavements ; without them I fear I would've folded and given up.

They helped me cope SO much better to the point of rebuilding a life for myself & my kids and coping mostly alone with the fallout from the haemorrhage. It may sound histrionic but they really have saved my life.

Some situations are out of our hands, but boosting our Serotonin, the 'feelgood' hormone, can make a massive difference to our state of mind, ability to cope, appetite and sleep. Thinking of you m'love... Cat x

123Bereft
123Bereft in reply to cat3

Thank you x

crashclown
crashclown in reply to 123Bereft

I know its not much ,but I'm sending u a hug.We r all here for u.😊💜

There’s also a ted x presentation of it

It’s fascinating

My wife was 637 days in hospital

Time and faith in your partners strength

Please take care of yourself too

The impact not seeing loved one, will sadly have impact on rehabilitation. The physical aspects is too soon to state, may be that BI rehabilitation unit not the right provision; were there other options.

The cognitive side please dont despair yet either, my husband didnt know colours or objects/items that our toddler played with.

Your mental and emotionally wellbeing im glad your seeking support, but you are right no magic wand will take away the sorrow at this time, no distraction techniques will help with everything whirling in your head, its just a matter of what support can ease to help managing. But going back to your first posts, then few months later there is progression, yes its small, but its stepping in the right direction.

Please dont let this early stage cloud the positive steps your partner is making. It is a long hard tormental journey. But please take care of yourself, he needs you to be strong have his back, and he will let you know in his own way when that time comes, it will come with in his own best ability.

I agree with Cat3, read Ored13 post x

Thank you so much for your reply, it's nice to know people here can empathise with me because we've all been through tough times, or we wouldn't be here in the first place.

I have read ored13's post, and I'm very happy for her, her husband has made fantastic progress in a few weeks, if anything I'm envious.

Take care x

I've had a stroke,many tia's,4? concussions to date.I had rt side paralysis n etc.The docs said i wouldnt walk and id be in a wheelchair,plus other stuff.Well I only have paralysis rt knee down .I use my canadian crutch,which is black and cool as heck,lol Gotta look good if ya got stuff goin on lol.All the things they said I'd never do,I've done.Have hope n patience,as the brain works in mysterious ways even docs cant explain.Sending a hug ur way🤗

I have no advice I’m afraid, just want to send you a massive hug. My husband had a massive bleed on the brain in August. He was in hospital for two weeks, and being unable to see him nearly broke me. Two weeks! That’s nothing compared to what you are suffering. I do understand wanting to keep covid out of the hospitals, of course I do, but the lack of human contact is desperate for patients and their families. I wasn’t helped by the hospital staff, who refused to contact me and twice shouted at me for showing concern! I really hope your partner’s nurses and doctors are kinder. I hope you can get some support for yourself. And miracles do happen, so I will pray for you and your partner that things will improve. 🤗🤗🤗

I've had this, all through Covid we've been told by the media how wonderful nurses are, this hasn't always been my experience. Thank you for taking the time to reply and for your kind words.

Hi there

My husband was attacked in Dec 2019. Due to the extent of damage to brain during attack and also 2 bleeds he now suffers from Asphasia also amongst other health issues! I totally understand how you feel and there are days where I feel, although my husband is here, he is not the same person that I knew and loved! I am so grateful he is alive as it was touch and go for awhile after the attack. My husband is only 52 and and only say 3 words, one a swear word😞 that is the extent of his vocabulary and we have been told by specialists this is all he will ever be able to achieve. I often wonder what kind of future he will have without conversation and sometimes feel sad as he absolutely loved meeting people and spoke to anybody and everybody. I hope your husband has a good recovery and hopefully with some rehab you both can get to live a happy life together xxx

123Bereft
123Bereft in reply to Juniorbhoy

The latter part of your reply really touched me, my partner was just like this, walking along the street he would talk to everyone. I hope that too, all the best to you, things do sound tough x

My husband has aphasia. things can be hard at times but our relationship is still amazing. He’s hilarious sweet and loving and just had his moments of not understanding. Sadly he had a brain aneurysm and then a motorcycle accident on top of it which made it a lot worse but I love him just as much.

Is your hubby able to learn sign?

Thank you for your encouraging message, I hope my partner is able to be like yours, at the moment he still isn't really 'there' but I hope one day he will come back to me x

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