Hi all, my husband has now been in ICU for 9 weeks. He has been fully awake for about 7 weeks but is still on the ventilator and has lost a lot of muscle. He is feeling really fed up and it is often hard for me and staff to motivate him to push himself with physio and weaning off the ventilator.
I'm just wondering if anyone has any ideas or suggestions which I could try or suggest to the staff to try to keep him motivated and help him to move forward with his recovery.
It’s really difficult to appreciate the level of fatigue that you suffered and how hard it is to motivate - maybe your husband needs to believe he will leave ICU.
I was taken outside to feel the fresh air on my face & see my granddaughter & my dog. They had to do a whole crash team & stuff - it reminded me of all the things I fought so hard to survive for & that simple things were worth living and fighting for.
Thank you. We have managed to arrange 3 trips outside where he has been able to see our young son and I know that he has really looked forward to these. I'm hoping they can continue for as long as possible but with winter approaching it is unlikely.
I was wondering about discussing some short term and medium term goals with staff so that he has something to work towards. Do you think this would help?
Yes - my physio did exactly that.
We drew up a plan. My first goal was to sit up, stand up, walk etc etc. A plan was so important
Thank you. It's really helpful to hear from someone who has been through this. I will certainly suggest this 🙂
Weekly & daily goals - most importantly is the notion that I would & could get home.
Thank you so much. I will definitely be suggesting and encouraging this 🙂
Hi LeopardGecko
Motivation is really difficult and we all have our own way to deal with it. May be your husband needs to see the example of others. I am 72 and was ventilated / sedated for 6-8 weeks. I had a trachy. So I lost all my muscle, couldn’t speak talk swallow or walk and had to relearn these things. I am right handed but was really weak down my right side.
Physio was really difficult, just sitting up was nigh on impossible. Little steps such as sitting, turning and hanging my feet over the edge of the bed was the first major achievement. Actually getting out of bed was fearful, painful and seemed impossible but was achieved with help. I am 6’ 3” and the biggest help for me was a bit of apparatus called a pulpit. It had adjustable height as I stood and also acted as a walker.
I also needed to be in charge of my own physio. Once the physio realised I wasn’t avoiding what he wanted me to do he was happy to explain and then let me control what I did.
I’m not too sure about targets but recognising my own achievements was important and emotional. I left hospital mid March and found support with ICUStepsChester in June and they organised chair exercises. My first achievements once leaving hospital were being able to lift a boiling kettle and making a pot of tea. Next came getting out of my chair without using my hands. I worked my way up from using small tins of peas as weights, through soup cans to bottles of water. My wife was so proud of me that she bought me some weights and now I am using 1 kg weights which is hard so it takes time but is possible.
Make sure that things are made safe at home. OT will help but in the bathroom I have a shower chair, perching seat and a toilet seat all give me independence.
Memory was also a problem every day they asked a series of questions including where I was. I could never answer the questions and this got me really down so in the end I used to practice the answers before the doctor came round and eventually got them right. I passed but if I was asked again I wouldn’t know but it didn’t matter as I passed.
I also had a picture wall with family photos including pets.
Don’t forget if something hurtful is said it’s not meant!!!!!!
Thank you so much for your reply and for sharing your experience. I've tried having pictures up but he doesn't seem keen on that but maybe I just need to find the right time to suggest it again. He does get frustrated with poor memory so it is reassuring to hear that it is a common thing to ICU. The Physio team have started involving him a bit more in a weekly plan which I think is helping but I think he worries about the exercises being too hard.
I will certainly share some experiences with him to see that he isn't in this boat alone. Thank you
I found my photo wall very comforting, I know some hospitals aren’t keen because of potential cross infection in this era of Covid.
The physio is really hard but you have to push yourself beyond what is comfortable - that is the ticket home.
He certainly isn’t the first to struggle - wishing him all the strength he can muster.
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