COVID x STROKE : Can anyone help ? ...my dad is in... - ICUsteps

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COVID x STROKE

L271958
L271958

Can anyone help ? ...my dad is in ICU recovering from Covid and a major stroke brought on by it. He is awake but is on a ventilator alternating with CPAP via a tracheostomy. He can’t speak because of the tracheostomy and has no movement at all in his right side.

We obviously haven’t even able to visit him because if Covid and he is now refusing FaceTime visits. I don’t know if anyone who’s been in his situation can help us try and understand what he might be feeling or help us with things to say or not say to him. It’s so hard 😞

21 Replies
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I would suggest that your Dad is probably very disorientated & confused - it’s a very confusing time as a patient - try not to worry - hopefully he will be back to his self soon. I found not being able to adequately communicate really frustrating

L271958
L271958 in reply to Sepsur

Thank you! It helps to understand a little x

Hi Bigyellow , could maybe help you here. Her husband was very poorly and suffered a stroke, he is home now and getting stronger week by week. Hopefully she will respond ,x

L271958
L271958 in reply to Ferham

Thank you so much x

My husband became really fed up and frustrated when he couldn't communicate with his tracheostomy.

I tried to keep the conversation positive and tried to avoid asking him questions, especially ones that needed longish answers, as my lip reading is awful!

I found it helpful to ask friends and family to send me video messages which I played over Skype to him. This took the pressure off of me having to keep up conversation and also allowed him to hear from more people. I also showed him videos and pictures of our little boy.

I hope that you find something that works for you and I'm sure lots of other people will be able to offer advice and ideas.

L271958
L271958 in reply to LeopardGecko

Thankyou for your reply , at the moment we are trying everything, photos , videos , messages from friends, but we will keep trying what ever it takes , I hope your husband is doing well and thankyou once again for replying xxx

LeopardGecko
LeopardGecko in reply to L271958

You're welcome. My husband is slowly improving and got rid of his tracheostomy last Friday which has given him a big boost.

I hope your dad makes good progress and you manage to find something that works. I found it best to ask my husband which message etc he would like to be shown. I realised I hadn't been giving him any choice or control over the situation and there were some friends that he just didn't want to hear from on some days! 🙂

L271958
L271958 in reply to LeopardGecko

So happy that your husband is improving, and I also think that once my dad as the trache out it could help him to communicate with us better and thankyou for the reply , all what you have said helps me understand things more , take care xxx

Hi.I was on a ventilator with covid. I did not have a trachie. Like your dad, I was obviously isolated from my family. I had lost weight and had various tubs in my neck etc. I would not have wanted any facetime calls as I felt that my appearance and weight loss would have stressed them out more. As a dad, you want to protect your family. Also its worth saying the drugs we were on contributed, as they affect your ability to make clear decisions. Also I had limited energy for engagement with anyone. Sometimes just sitting there was hard enough.

I cannot guess what your da is feeling, but this was my experience. It sounds like he is on the right track. Keep in contact, in the style he likes and best wishes to you and your family, Pete

L271958
L271958 in reply to PeterJu

Thankyou so much for your reply , could explain a lot what my dad is feeling , hope you are well xxx

PeterJu
PeterJu in reply to L271958

6 months out and it is still a slow road, but recovering. Pls feel free to private message me if I can be of any further help. cheers, Pete

L271958
L271958 in reply to PeterJu

Thankyou so much ❤️

Hi L27

This is all about getting the balance right between respecting your dad’s wishes and making the right decisions- and they will be wrong 😑

I was sedated / ventilated for nearly 2 months with a trachy. My family say that they communicated with me while I was under but I have no recollection of that. Once I came round they attached a voice box to my trachy. This was great but frustrating because it was for only a short period of time at a time and so it was even worse. Writing notes was ridiculous because no one could understand my very clear writing with my left hand with words spelt backwards in a foreign language!

My family prepared a picture wall with all of them, 12 grandchildren and 2 grand dogs and 2 grand cats and the staff were briefed to ask questions that was quite difficult to do.

In the early days of coming round I did try to use my iPhone but I was so weak that I had difficulty holding it let alone pressing keys. Once I had stepped down to the cardiology ward I did manage to use my iPad.

It all takes time. I missed Christmas and my 72 birthday but I came home mid March recovery is slow but steady.

My mantra is take care of you self😘

Thankyou so much for your reply and I hope your doing well in your recovery , every little bit of information we receive on here helps us to understand things more , and hoping he soon will have the trache removed , fingers crossed 🤞 xxxx

Hi it sounds like your doing all the right things.We laminated photos to put around my husband's bed and send video messages via the iPad.My husband Like your dad Woke up in ITU after over a month on ventilator, a Tracheostomy and a stroke caused by Covid.he reports extreme frustration at not being able to communicate. He describes the weaning process as gruelling.He was often too exhausted to Facetime but we just kept trying.The sister suggested we had 2 protected FT slots morning and evening. This helped as he learned to expect a call at those times.

When he left ITU after 9 weeks to go to rehab he only had use of 1 arm. it took a long time for the stroke side to start moving. 6 months after ITU he has 3 functioning limbs and continues to slowly improve his left leg.The physios now have him walking short distances with his quad stick.As Ferham said it is a long road and the roller coaster continues but the dips are never as big as they were in intensive care.

Wishing you and your family well

Big Yellow X

This reply has just shown on the account we set up today for my husband Richard (Woodenrobot). Sorry for any confusion.

Big Yellow

L271958
L271958 in reply to Woodenrobot

Thank you so much for getting back to me , I really do appreciate your time, it has given me a much better understanding. He has agreed to facetimes the past few days and he blew me a kiss goodbye which was amazing. When we are on FaceTime he is constantly trying to mouth words as he has the trache fitted. Is this something your husband would do ? We are hoping and praying he still has a speech and wondering if the movement of the mouth is a positive. Like your husband my dad was also very fit and healthy it is just so cruel what this virus has done to so many peoples lives :-( I really hope your husband fully recovers he truly deserves it after all the suffering. Thank you once again for getting back to me. Sending lots of love and healing to you, your husband and family xxxx

Yes he often tried to mouth words and it was frustrating for both of us as I couldn't understand. i think it is a definite positive as he is trying to speak.As he gets stronger they will try to deflate the balloon in his trachae that stops the air escaping up. They can only do this for short periods at first but it means the air can pass the vocal chords and he can make sounds. Richard spoke the first time they did this though they were not expecting him to . His voice was strange and robot like at first but it soon improved. With the stroke and the damage from the tube Richard failed swallow tests for the first 7 weeks after the trachae came out so could not eat and drink.He has recovered his swallow. This doesn't happen to everyone. Farham's husband passed first time but just a heads up as we were not expecting it and got very upset about it. It sounds like your dad is making small positive steps. I used to hate it when people used to say stay strong. It made me feel bad for not coping so I will just say try to stay together if you can. XXXX

Ferham
Ferham in reply to Bigyellow

You coped mighty fine to me and are still holding it together xx

L271958
L271958 in reply to Bigyellow

Thankyou so much , it’s so upsetting to see him try to speak but you have given me hope , I know he is getting stronger but at the same time it’s hard because I think he is realising that he can’t do things that he once could , as a family we can’t wait for him to get out of icu and on to a stroke ward , I thankyou once again for your reply you have brought great comfort at these hard times , take care xxx

My dad is also on the ICU he is fighting so many things! He has COVID pneumonia, sepsis, low white blood cell count and platelets, 5 days later he had a Sever stroke on his right side of the brain which mean it paralyzed his left side. I’m so so so devastated, He was on the bicap for 2 weeks but then 2 days ago he had to be intubated, I’m so scared 😓 But I have a lot of faith dad my dad will be home with us again! He is a strong man and I know he is fighting! I definitely understand how you are feeling. Especially since you can’t see your love one! How long has your dad been on the hospital? My prayers for your dad and your family!🙏🏻✨ Faith faith faith! The lord is big! He has the last word remember that✨ No Matter what the doctors say! I can definitely feel how your feeling as a daughter I will give my life for my dad I will take his position 😞 stay strong! 💪🏻

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