What was your mobility like when you were discharged home?

[NICOLETTE2020]

So my Dad has been in hospital 7 weeks, 6 of which have been in ICU after suffering a ruptured aneurysm. He also has a stoma after some of his large bowel died and he later developed pneumonia from ventilator. Now he is on medical ward but not mobile and with alot of muscle wasting. I am worried because when i talked to him last night he mentioned about asking to be discharged within next week. I cannot see how this would be possible. I have offered to stay with him for a while but I have no experience of helping someone with the severe issues he has. He also doesn't seem to want to talk about stoma but will need to learn how to take care of it, empty bag etc.. He still has a catheter in and nurse said that his bladder will be a bit lazy when it does come out so that will be a further issue he will have to cope with.

Has anyone experienced going home with minimal to no mobility? I have heard the odd nurse mention rehab which i assume focuses on mobility. I really do not think he should be going home any time soon so perhaps a rehab facility will be an option in a week or so provided he is a little stronger and is managing stoma and bladder.

[Stayloose]

I fully understand your Dad's need to escape. However, being home is far harder than you expect it to be. Your Dad needs to be able to manage toileting etc on top of general mobility. My husband looked and seemed well when discharged but was really very weak. He had me caring for him and relative youth on his side. I would emphasise with your Dad's need to go home but strongly caution against self discharge. I feel for you.

[AKAICUsurvivor]

I spent 90 days in ICU - when I dropped down to the wards ‘I’ wasn’t ready for it, nor was the ward.

I didn’t want to go to ward before I was off catheter - I knew they often lead to UTIs & I’d had a belly full of hospital caught infections (CMV, VRE, MSSA, EBV). So I insisted on having it removed.

I had nearly total body muscle waste - my heart had shrunk - even the muscles in my eyes had got lazy. When I woke from coma - I couldn’t move - not fingers or toes - in fact I could raise my forearm 3inches and move my neck & lift my knee 3inches. The body, in trauma, needs immense stores of protein, the body easiest source of protein is in the muscle tissue - hence it strips the body of muscle. Coupled with this, the old saying “ if you don’t use it, you lose it”, is so true - all the machines have taken over what the muscles would be doing.

Slowly I learned to sit up with 4-6 nurses helping me - all in full PPE gear because I was so toxic.

By the time I left ICU I could walk on a zimmer with people either side very very short distances 10 paces maybe.

I ended up after 20 days on wards going to rehab for 10 days, by then I could walk the length of the ward, do a flight of stairs and just about get myself on and off the toilet - essential!!!!!

Once I got home I did come on in leaps & bounds but I needed constant care. I could get in the bath but couldn’t get out ( no core muscles). I had frequent vasovagals - which eventually I learned to manage. The remedy is to get on the ground and stick legs in air. Very difficult when you can’t yet kneel or crouch or get up on your own - I needed a push up from lying flat on bed.

If we went out - I needed wheelchair with us too - I could walk some but then get stranded by exhaustion. Within 6 months I was volunteering at a school and within a year I was working. The medical staff said it would take me 3yrs to recover & that I might never be able to work again.

[NICOLETTE2020 in reply to AKAICUsurvivor]

You really were put through it Sepsur. I didn't connect the muscle wasting with organs such as the heart too. As far as I know my Dad has no issues with his. This is a worry though that he will now be in and out of hospital with a constant list of issues.

I spoke to one of the nurses today and they are going to look in to rehab options this week but he does need to be off catheter and be a bit more onboard with his stoma as well as eating more. I do wonder if rehab for someone of my Dad's age is code for overspill ward for the eldery to free up bed in acute ward. He didn't even want to talk to me today because they have put him on antidepressant and now I am worried he thinks I consented to this. He has never been on anything like that and I know he will not be happy about this atall. As far as he is concerned mental illness is for the weak which is ofcourse ridiculous. I wasn't informed by any doctor about this and infact am still waiting to talk to a doctor in that ward (which i requested on Friday) that he has now been in for a week. I must have told the staff a couple of dozen times that he needs to get outside for fresh air. That is the pick me up he needs.It did wonders for his mood on Friday. I shall see what the senior charge nurse says when she phones this morning (mon).

[Grace1976 in reply to AKAICUsurvivor]

I am so happy for you. My sister in-law ran my brother out of life after only 5 weeks and 5 days through terminal extubation. My brother was only 55years old. I know he would have recovered if he was given a chance.

[AKAICUsurvivor in reply to Grace1976]

I’m so sorry to read this. My condolences to you and your family

[Natty1234]

Hi I went home after 10 wks in icu then 2 wks in ward could hardly walk but with help from carers and district nurses i got there had the soda raised and toilet took me a month to be able to walk short distances hope this helps all the best for the future

[NICOLETTE2020]

Well my Dad said on the phone that legally he can go home so I am really worried. I don't think I can cope looking after his current level of care needed. Even when he is on phone he is so out of breath so beats me how he intends on walking out the ward by himself.

[swiss1978]

I was 2 weeks ICU and 2 weeks renal Ward, left hospital in a wheel chair, 18 months later I can walk 3-4 miles per day and mobile enough to now be normal. Movement and pushing yourself to do small amounts of physio early days are key!! Good luck

[NICOLETTE2020]

That's good to hear. I think once he starts basic mobility he will make good progress but not there just yet.

[stevet11753]

After six weeks in critical care I was in no fit state to be sent home. I was stepped down to a rehab ward where it took two to three weeks to get me mobile. Things obviously vary across the NHS but I was not to be discharged until I could walk the ward and up and down a flight of stairs unaided. I also had a stoma bag and I had to satisfy the stoma nurse that I was able to change the bag unaided. I hope you can get things sorted for your dad, it seems he doesn't realise how difficult a position he's in.

[NICOLETTE2020 in reply to stevet11753]

The nurses have taken him to the gym where the physios are trying to get him to weight barebut it's not happening yet and is exhausting him. He was wheeling himself in wheelchair a little so that was progress. Still so out of breath when on phone though. I wonder how long it takes the lungs to recover or is the breathlessness down to his general weakness?My Dad still has catheter in and hasn't mentioned his stoma so no change there yet.