My husband had his second stroke on May 1st and he cannot walk and has aphasia and dysphagia. He is in a SNF waiting to get into a better rehab facility. On Thursday he managed to write in his notebook to me that we needed to talk about “the funeral” - and my heart sank. But I wrote down all his wishes regarding church, grave and music. Then I tried to lighten the mood a little by saying that he wasn’t going to die anytime soon, upon which he started sobbing and said that he hoped so. He has never expressed this to me before and it was really harrowing (he is my only family). I had to take a Valium when I got home. But yesterday was a much better day. His SLT is on vacation and she has entrusted me with swallowing exercises and training. Earlier this week my husband only managed two tea spoons of thickened water before coughing, but yesterday he managed six tea spoons and no coughing! Very happy about that and hoping for more progress as he hates his NG tube with a venegance. Thank you to anyone who is reading this.
Ah, Anna I am so sorry to hear your husband has had a second stroke and I wish him well.
It is sad to read about his request for you to make a note of his funeral wishes and I hope you both find the strength to fight on and move forward. It is a frightening experience having a stroke and it strips us of everything we own, our dignity, our freedom and choice as well as normal movement and functionality. I understand that the difficulties he is now experiencing is dragging him down. I couldn’t swallow for weeks after my stroke and wondered if I’d ever be able to drink a glass of water again. Your mind goes into overdrive and thoughts tend to take over. Some negative and some positive. He is being practical but he must also find a positive route to take to aid recovery. I too have told my husband and sons what I want when the time comes and if a DNR may be required. All difficult and sad conversations to have but a necessity in some respects. All that said, I sincerely hope you can both ride through this tough period and he will see there can be life in the future. Maybe not as he was but its a life and you will both adapt to the new ways. The thoughts of another stroke often linger in my mind, but we must all try to remain positive. He got through the first stroke and I hope he can find a way to get through this down period he is having. With your love, support and encouragement I hope he will come to terms with the bad times at the moment and look forward to a better outlook and future. Wishing you both all the best for the future and his recovery. Take care of yourself too, that is an important part for both of you.
I am sorry to hear about your husband. My wife had a stroke on the 29th April and was on life support for 9 days, told she wouldn’t talk again, be unlikely to use her right side etc, but she is walking and talking, albeit she has moderate expressive aphasia and her right arm is very difficult to use.
One of the first things she asked me on waking up was ‘How long am I going to live?’, which is a heartbreaking question to be asked, but all I could tell her was that she had plenty of years ahead of her (She’s 63), and that we still had plenty of things to do together and so we needn’t dwell on the bad stuff.
It is tough, but it’s the mind being practical and trying to sort out details now that you hopefully will not need for many years to come, but in a strange way, its your husband trying to be helpful, even if its a subject you’d rather not dwell upon.
I hope he will continue to improve. Karen had issues with swallowing, and she had a tracheostomy and a feeding tube, but now that’s all gone and she is eating normal food again, even if her appetite is very different from before she went into hospital. I must admit though, that her fondness for a cornetto is undiminished!
I wish both you and your husband the very best going forward.
@Sue22, thank you so much for your kind words of encouragement and hope! I wish you all the best as well. Being a carer is tough, I have been on full or gradual sick leave since before Christmas. I visit my husband every day for four to five hours, trying to keep “his head above water” and his mind occupied with positive thoughts. He cries a lot, I believe it’s called pseudobulbar affect, and that is harrowing as well. But I have hope for the future and this forum is a big help.
@2Weevils, thank you so much for your kind words! I have been reading about yours and Karen’s struggle here and I sincerelywish you both all the best. It’s good to hear that Karen’s appetite has returned and that she’s able to eat normally again. The doctors are not always right. After his first stroke my husband was told he would never walk again, but he did. I think my husband is disappointed that the swallowing hasn’t returned after more than two months now, as it only took him five weeks the last time around. He’s also devastated about the aphasia, but happy that he is able to write, as he is a writer. It is great that we who are carers also can use this forum for support and help (I’m sorry for any errors or funny sentences, as English is not my first language!) Anna C
I am also a writer, Karen is the dreamer… I think. We all know that strokes are very individual things and recovery varies wildly in both scope and timescale, but I am sure that with your support and encouragement, your husband will get there eventually.
I have my moments @AnnaC
both the downs and the ups swing around and about,
but we all have this forum and we have one another,
there is much to be grateful for.
Hi @annaC Great to read an update on your husband and whilst things are probably far from where you want them to be it does sound like progress is being made. 2 teaspoons to 6 teaspoons and no coughing is great progress. Hopefully,
this week will see him increase it more.
Talking about funerals is hard but it is a practical thing that we should all do. Having a stroke does make you realise you’re not invincible after all and that’s probably why he wants to get it sorted. It is always good to know your
loved ones wishes so you can do things how they would want it to be. After all it is the last thing we can do for them. I am sure he has many years to go yet and might even change his mind about what he wants in that time.
Hope it isn’t too long till he gets into the rehab facility he needs.
You’re doing a great job with him. Keep going but look after yourself too. He needs you as much as you need him.
@Mrs5K, thank you so much for your kind and encouraging words! You are right regarding the funeral arrangements, of course, and I just hope knowing that I now know what he wants brings him a little peace of mind. I think they will apply for a place for him at the proper rehab place (where he spent three months this spring and learnt to walk again) in a few weeks’ time and hopefully there will be a vacancy then.
Hello AnnaC,
I too was told I would never walk again (why are some doctors such poor motivators?) but after a huge amount of physio, over 5 years, I am now mobile once again (albeit with stick) and after my feeding tubes were removed, I soon learned to speak again, although that took a while longer than swallowing.
Best of luck to your husband and yourself and by the way as a proof reader and editor, the few tiniest errors you made are not worthy of mention and I have seen some howlers from contributors whose first language was English, so congratulations to you on your English language skills.
Regards,
Bob Isle.
@bob.isle, thank you so much for your compassion! And congratulations on your impressive progress, very well done indeed. Thank you also for your kind comment on my English language skills Although I have studied British literature and have an MA in linguistics and work as a literary translator from English into Norwegian, I still have to think long and hard when composing a comment here. I am sure my English isn’t always a 100 % idiomatic, but hopefully I am making myself understood all the same
Your communication skills in the English language are more than adequate.
Most English people refrain from thinking long and hard when they compose a written piece and it frequently shows.
I’d like to add something more that I hope is useful.
As someone who has had a stroke I went through those strange emotional phases a year or two ago.
I would get tearful sometimes, it did not seem to upset my wife, she just let me go through it.
Oddly it was far from unpleasant and gave me a feeling of relief as if something was settled.
It was quire cathartic, but in many ways defied explanation. I would say there was no problem about what happened. This might not be the same experience that your husband is going through I wouldn’t pretend to know that.
At the other end of the emotional scale, there were occasionally also bouts of laughter that did not really have any relevance.
Overall that is all very much in the past. However before stroke I was a much more guarded individual and would frequently keep my opinions to myself.
These days I am far more ‘up front’ and will speak out what I think and feel.
This doesn’t suit everyone but I’m not sure careful self control is necessarily a good thing either.
Stroke puts you and those around you through all this but if it’s any consolation everyone somehow adjusts to the ‘new landscape’. At least it seems that way to me.
As always my effort to convey a few words turns out to be what looks like the beginnings of book.
I haven’t forgotten you Anna and still remember you and your husband in my prayers. That’s great that he is managing more swallows. Seems like his throat muscles must be getting stronger. The more he can do, maybe the more he’ll be able to do, You’re doing the right thing I think, by being up front about things, but still never give up hope or trying to get better.
@Bobbi, thank you for your kind and wise words! I do hope we will adjust to this new situation in time. But this second stroke seems so cruel since he was doing so well when it occurred, having just learnt to walk again.
@axnr911, thank you so much for keeping us in your prayers. There truly are many wonderful people on this forum. I will continue with the swallowing training, fingers crossed!
So sorry to hear the news. Glad that he is with the family and recovering. I was in a similar situation during my first stroke 4y ago. Take care my friend.
