Me, Again!: I'm really struggling, feeling really... - Headway

Headway

7,956 members10,427 posts

Me, Again!

123Bereft
123Bereft

I'm really struggling, feeling really emotional and really wanting some reassurance, but I know that maybe no one can tell me what I'd love to hear.

My beloved partner, who has had pretty much everything go wrong, is now post his last surgery 15 weeks (13th July) he spent 10 days in an induced coma and has only been on the neuro ward since earlier this week.

His neurologist has said he has extensive left side damage and in his opinion will never make a reasonable recovery. My partner sits well, he has started to take sips of thickened fluid, he has good movement in his left arm and leg only and he has a small trach because he has excessive chest secretions.

My main worry is that he has no speech and appears to not understand anything, he also appears not to recognise me. When I visit, he will stare at nothing for ages and when I try hovering over him to catch his gaze he merely glances at me and then looks away again. He was also really tactile pre admission but now doesn't really want to hold my hand and these things are breaking my heart.

And so, I ask, again, has anyone on here had experience of someone like this making a reasonable recovery, I do know its early days yet but I yearn for some reassurance that my constant hope, which is constantly dashed by the hospital constantly saying 'no change' is not wasted.

I dropped off a healthy man for surgery he chose and I cannot accept the outcome.

Take care everyone, sending you all love and best wishes xx

20 Replies
oldestnewest

What was the surgery for?

123Bereft
123Bereft in reply to Headshrink

He went in on 30th June for aneurysm clipping, had a stroke during, then went back into surgery 11th July for clots and bleeds & again 12th July, more clots more bleeds and 2 more aneurysms. Also during this third surgery he had a large section of his skull removed. Right up to the last surgery he was doing ok and responding well.

Headshrink
Headshrink in reply to 123Bereft

I see. Ok it is really early days, i think its hard to predict what might happen at this stage, hold strong and try your best to love and support him, . All the best

123Bereft
123Bereft in reply to Headshrink

I love him fiercely, with all my heart. Thank you.

I'm sorry to know there hasn't been any great improvement in your partner's condition yet. It is still early days. I hope things can improve. Sending you strength and lots of good wishes.

Thank you for your kind wishes.

I don't recall usernames but over the years I've seen reports here on Headway of reconnection with reality, after months of poor or no response.

Years ago, my own cousin suffered a serious brain injury from an RTA and was comatose for 5 months before eventually returning home to her husband and young daughter. Her father visited her every day and, whilst some of us had given up hope, he never lost his.

Hang in there m'dear ; we're rooting for you and your man...

Cat x

123Bereft
123Bereft in reply to cat3

Thank you Cat, you always give positivity.

From few months ago, and this post there does to be movement. Sitting up now thats great, swallowing although thick formula again massive improvement, his speech be working progress though with trach im afraid. Hes glancing at you, may sit on angle so he can stare at you, so no eye contact for 5-10mins with no words. Speech and language involvement try and get in contact with them so your both on the same page, so you know where they are on assessment.

My husband thought I was staff and got aggressive when i said i was his wife helping him with a stucking on sponge stick for dry mouth, luckily restraints, mitts prevented him physically hurting me, despite grabbing my clothing. Dont be discouraged by this his brain totally relearning, discovering. I sang to him, kept talking about the crazy world. Go with your heart, keep showing love to your man,hes only at the start of rehabilitation its a long long road, always stay positive when with him, never cry in front of him. Use this forum to get it off your chest

That's something I really struggle with, not crying, my heart is broken more every time I see him. Thank you for your words of encouragement, I really do appreciate them.

I cry every day, its only human, dont be so hard on yourself, its very natural with these uncertain emotions no one should have to experience. Just stay positive , keep your hope and hold on to it, it will help x

Sadly we cannot predict your husbands outcome, we can only give you hope through our own stories of recovery. My wife suffered an acute subdural haemotomma, double skull fracture and a double SAH in December 2018. Underwent surgery for a decompressive crainotomy to treat the bleed and susequently spent almost 4 weeks in an induced coma during which time she also had scepsis. I like many others was told she would have long term damage. When she woke, she had complete right side paralysis, little recognition and was far removed from the person she was pre-accident. Yes my heart broke every time i saw her but for one minute i never gave uo hope because i knew the strength of the woman.

We are now almost 2 year on, her memory, cognitive and personality are now completely back, apart from the fatigue she has made an amazing recovery, she is now even meds free. Yes its a long journey and heart breaking at times. This is our story and i hope it gives you some comfort.

123Bereft
123Bereft in reply to claretand

Thank you, your message gives me some hope, I need to stop arriving at the hospital with hope that there will be even the smallest of changes in his ability to communicate or recognise. I'm feeling a little stronger today so hopefully I will do better.

I’m sorry that feeling so bad, I have thought of a couple of things that may help.

As you know my husband is talking much better now, but his gaze is not, he doesn’t look at me and sometimes seem to stare past me, but he has recently moved rooms and has a big window, when I commented on the lovely view, he told me he couldn’t see it, his vision is all fuzzy. So maybe your partners vision may have been affected?

And with the hand holding as well, when I get to see him I hold his hand and stroke his arm but he has told me that sometimes it causes pins and needles sensation and shooting pains when I touch him, I think this is possibly from nerve damage.

Also my husband had a board before he was talking so well, that had all letters of the alphabet on it, and he would point to yes or no. It would really tire him but we normally got a couple of responses at a visit.

I don’t know if any of these things will help, but it’s brilliant that your partner is sitting in a chair,that’s all good for his trunk strength,my husband only tolerates about 15 mins before he complains of intense pain in his back and asks to be put back into bed.

Also the thickened liquids is really good, they have attempted to give my husband teaspoons of thickened liquid several times over the last few months and he is just not tolerating it. He just vomits it all up and they have to stop again, he may be peg feed forever.

I know how desperately you want to see your partner,how he was before, I feel exactly the same, I hope we all get there,I really do

Take care x

123Bereft
123Bereft in reply to pozza40

Thank you, these things do help. I will take cards with me that say yes or no and see how it goes. I'll let you know.

I agree with everyone here..Time will tell.Be by his side n love him.

Don't forget about "u" in the process.Alot of people forget that.

Sending u a huge hug🤗

123Bereft
123Bereft in reply to hippolove1

Thank you very much for your kind words.

Hi

My husband was very much as you describe when he had his first stroke. The hospital did not want him to return home and they kept him for six weeks which he absolutely hated. I admit that to begin with I thought he couldn't understand me and the noises he made were difficult to understand until I got used to it. Having had a stroke myself, I can definitely say that one of the most difficult things at first was people treating me like an idiot. I didn't have my stroke until recently so I can recommend the following. To begin with, ask only closed questions, those that just need a yes or no answer. Try to make eye contact and do touch your husband even if he seems to have "changed". It is early days. Over the first six months, my husband began speaking more fluently although he still made loads of jumbled up phrases. I got used to it and tried not to let him know that it was getting to me. He never managed to say my first name again, I don't know why, but he gave me a pet name that he could say and that stuck. I discovered that he wanted to do the same things again that he had done before his stroke, but more simply. I think that it is very early days for you both and want to give you hope because there are chances for him to make significant recoveries. It is so stressful for you but it is absolutely vital that you get plenty of rest and look after yourself. My husband told me that his main worry when he had his first stroke was that he was leaving me to do everything. This made him feel depressed and wanting to be alone, but that was not what he really wanted.

Thank you for your reassurance and helpful tips, so pleased your husband made a good recovery. I'm going to take yes and no cards next time I visit but I've had no response at all from anything I've said, and neither has any on the hospital staff. Still hopeful though.

I took pictures of our little family and us over the years , put information on back like who, where and when for staff to help staff make conversation.

Its overwhelming putting photos together. We still got same photos up, but still with hospital tape on, scrunched up in one room pegged up. Despite the constant display and tough looking at maybe when ready when my mission done best it can be, i will put away.

You may also like...