Post ICU post covid post coma homecoming - ICUsteps

ICUsteps

5,914 members1,988 posts

Post ICU post covid post coma homecoming

Lauralou412 profile image

Hi everyone.

My husband has been discharged today from 50 days in ICU of which he was in a coma for 17 days. He has been described as one of the ‘best discharges’ of his consultants career. He is going into a step down ward for a few days, a regular ward for a few days then all being well- home! I imagine that will be in 7-10 days time

My husband suffered some complications in ICU and is still battling his delirium. He also has PTSD. For those that have had similar experiences or, for the other halves; what can I do to prepare for him coming home? Cleaning wise, have bought lots of dettol/ anti bac products. From a mental or ability or any other point of view, what do I not know or how/ what do I need to prepare for? I know the docs will help before he is discharged but the info online is very very limited and I like to prepare everything!

TIA. This group has been fabulous for our family by the way.

18 Replies

Hi Laurallou

That’s really good news. This my perspective of your questions (I was the patient and I am 6’3 sedated and ventilated for nearly 2 months so very weak when I came home)

On the practical side ask OT to do a survey of your home (we live in a bungalow) I needed for the bathroom a shower chair, a perching chair and a toilet frame (not just the seat) it also has arm rests essential for getting up. All these on free loan. In addition I had a grab handle fitted in the shower (I have RA) this is provided and fitted FOC. Additional you may need a height adjuster for an easy chair but OT will advise.

On a personal basis I needed help showering etc. This was exhausting.

You need to get the balance of caring right. By this I mean no doubt you will be on edge and almost act as his shadow be careful that it doesn’t overwhelm him.

Make sure that you get all support you can from the hospital when I came out because of covid there was none available. Don’t be afraid of “mental” issues.

I was very emotional and the slightest thing set me off.

I set myself targets the first was to be able to boil a kettle and make a pot of tea - safely the second was to get out of my chair without using my hands I did these with the support of zoom chair exercises provided by ICUStepsChester

Above all you must care for your self

This is great, thank you. When were you discharged familyhistorian? You seem to have gone through so much. Mental aspect, I feel I am prepared for (as much as I can be) but the overwhelming and being overprotective I have read about. What can you advise on a balance there? Any tips?

Another concern was our sofa, it’s too low and too deep. I have ordered a new one which will suit his needs more but it will be the end of may before it arrives so any tips in the meantime? I will definitely get OH on the case.

Thank you again.

You haven’t said how old your husband is. Not only is he man but also attitudes are effected by age (I’m not being rude as I am a 72 year old man)

I forgot pee bottle but I already had one. I was up 5 or 6 times a night and although I had the catheter out for over 3 weeks. More often than not, I was desperate.

As to the sofa as a temporary measure may be a frame rather than blocks but ask OT.

The technical term is my balance is crap! As I said we live in a bungalow.

Don’t forget this about me so things may be very different for your husband.

When I first came home I used my sticks indoors wouldn’t catch me with a zimmer (wouldn’t catch me anyway😂)

As daft as it sounds I plan moving around so I know where and what I can grab. If I’m turning I tend to turn in small steps. When I do zoom exercises and I’m standing I hold on to a chair.

I fell over twice, fortunately I didn’t hurt myself much but I had to get up myself. Crawled to something I could climb up it was so difficult because of my lack of strength. Don’t help unless asked to do so he may be very hurtful but doesn’t mean it and will be upset afterwards. I was very determined but others had to accept that if I wanted help I would ask. This also about being “the man of the house”

I’ve got neuropathy in my legs which apart from the discomfort means that the sense of feeling isn’t too good. I prefer bare feet at home but that is a bit risky as you don’t know that you have hurt your feet until you see blood. I wear slipper socks or a pair of M&S slippers that have a pull over flap.

When I came home having already lost a tremendous amount of weight I lost a further stone so he might like some pants and a pair of trousers that fit but don’t go mad as I have put a fair bit of weight back on in 9 months. But don’t just go off and buy do let him choose. I have gone mad with colour.....

This is great, thank you!My husband is 65 going on 19. He is very driven to get well and mobile again. I am very conscious of not over helping but don’t want to leave him and be too ‘harsh’ either. I am sure I will learn to balance through trial and experience.

He is also the ‘man of the house’ and ‘head of the family’ so I think it will be a major shift for him to start but also a great driver for him to work towards.

Urine bottle on order and some diabetic socks. I’ll get some slipper socks too as he has mule slippers currently and he wasn’t taken with his valentines gift of memory total slippers! 🙈

Thank you so much for all of this great information.

One of those soft physio cushions, a toilet seat raiser thingy - so you can perch 6ins higher, a shower chair.

Be prepared for someone utterly exhausted, bad sleep patterns, forgetfulness, hair loss, dizziness both mentally & physically.

Wow, that's wonderful news you will have him home soon . OT /PT will provide the majority of the equipment you should need.When my husband came home his mobility was a huge issue, I purchased some urine bottles, which he used until he was more mobile .

Additionally as he had lost so much weight he was struggling to sleep on his side as his knees had no protection, I bought a cushion which sits between his knees, which was a godsend for him.

Vaseline and hand cream were essential , his skin was so dry and had dreadfully chapped lips. His ankles and feet were swollen, he was unable to wear his slippers or normal socks, so I purchased some diabetic socks and slippers in the next size up .

I can send you links if you wish to the products I bought?

xx

Hi Ferham,

That is great information, thank you for this. This information, you just don’t know until the time is here. Would you mind sending the links please?

I do hope that your husband is recovering well and life is returning to some form of normal for you both xx

Ferham profile image
Ferham in reply to Lauralou412

I have sent them over to you privately

I was going to say everything that everyone else has said so I won't repeat it all.

Our OT came and did a survey and we got lots of useful equipment (my husband had had a much longer stay so a hospital bed etc was needed).

One piece of advice that I got from the ICU Steps Chester relatives group was to not do everything for him. I think this bit of advice has really helped my husband to keep pushing himself and he is making small improvements every day. Obviously he knows I will help him if he needs it but he certainly pushes himself a lot more than if I were to do everything for him 🙂

Such an exciting (but exhausting) time to finally have your husband home with you. I hope you don't have to wait too much longer xx

I'm so pleased for you Lauralou412. My husband and I were going through the rehab & homecoming stage this time last year. He's a similar age as your husband too. I echo what that the others have said, and also add that you can't insure against all trips & falls. We can do things to help with equipment, keeping pathways through the house clear, and getting in routines that make daily living more predictable, but in the end our loved ones have to find their own edge as to what is safe for them. I have come to accept that there are times when dignity and autonomy are the top priorities in someone's mind, rather than absolute safety. It's not always easy, but the sense of deep wellbeing I got from just having him home got me through. I wish you all well in the coming weeks and months.

Hi BabyRhino,

Thanks for sending your experience through, I hope that you are both settled into a more normal life now.

Did you get a private physio to help speed up your husbands recovery at home?

We had some NHS physio at home, but not as much as we would have done if it hadn't been for lockdown. However, we we're fortunate because I have some experience of working in rehab. We lived all on one level for several months and gradually he gained enough strength to do a couple of steps. Eventually we were able to move the bed back upstairs, and going up and down became part of his physiotherapy.

I does take some time to adjust from being in ICU to being in the tranquillity of home. Being constantly monitored it hospital, you can feel venerable when you get home after such a long time, every slight thing can feel like a medical setback. I had a blood pressure monitor and a Oximeter at home, they are pretty inexpensive now. I use them a lot when I got home to check blood pressure and heart rate and oxygen levels, its a "actual check on how things are" if he becomes worried how things are going, the machine doesn't lie. Don't worry about what may seem as an over reliance of checking initially you eventually get bored being within the normal limits. A digital thermometer is also a good idea. I wish you and your husband the very best and keep active and positive.

Hi. So I was in icu with delirium and ptsd was subsequently diagnosed. My experience of delirium was only in the step down wards. Causes include the effect of drugs but also the inability to get a decent sleep. I do not want to scare you, but most of us had it and maybe steel yourself for more delirium to come.

Here is my list for things you can do for coming home.

1 go to Icusteps website and download their “intensive care-a guide for patients & families”. Some good tips on what to expect are there. Other good info too !

2. I have a 17 year old daughter. I asked my wife to explain to her that my reactions to stuff might change and that occasionally I might get upset.

3. Muscle wastage will make him weak everywhere. People range from not getting up to stairs to more capable. Try and work out where he is on the scale and plan sleeping/ loo access. accordingly

4. Taste buds were shot for me and I could only deal with bland food initially

5. Because of my muscle weakness, I was worried I wouldnt make it to the loo in time at night. We bought those male tena inconto pants for nightime. Pleased to say I never needed them but gave re-assurance

Most importantly, look after yourself. Recognise the trauma you have been through. You are likely to be on high-alert for a while yet.

I would be very happy to have a chat with you, if you wanted. If yes, please let me know and I will private message you my mobile number

Best wishes to you all, Pete

Lauralou412 profile image
Lauralou412 in reply to PeterJu

Hi Pete,

Thank you so much for this. When did you leave icu? I hope that this is all now in the past for you. ICU steps are great, have got lots of info from there. I did order a urinal but will get some pads too- I think keeping the dignity is a high priority.

I must admit, I am anxious to almost just ‘get on with it’ and see what we are up against. We cannot visit him, I haven’t seen him for 2 months now and short of the occasional FaceTime, I have no idea of what kind of person will be leaving the hospital versus the person who was admitted. Preparing for this is of utmost importance to me so I can give him everything he needs.

We are fortunate to have everything he needs on one floor. Our sofa will be too low and whilst I’ve ordered another, it won’t arrive until may/ June so thinking of getting a lazy boy style chair for the time being or something of the sort.

I hope for you, things are now easier and that you got the support that you needed for the ptsd.

Laura

PeterJu profile image
PeterJu in reply to Lauralou412

hi Laura. I was first wave of covid and left hospital 18th April. I am now getting good support in terms of physio, psych and occupational health, although I had no support for about the first 6 months. GP's seem to be a mixed bag ranging from useless and unhelpful (mine) through to really supportive. If you get the latter, hang onto them! The recovery takes a long time, so you should expect this . It is also very personal and subjectively from what I have seen, does not seem to directly link to age or how tough it was in hospital.

Your partner is very lucky to have you. I am probably going too far here, but try not to worry too much or expect too much of yourself. Nature takes its own time to recover and doesn't care about our human-made timescales. The best thing I ever do is accept this, try not to worry about the past or the future and just do the best I can in that day. best wishes, Pete

Hi Laura, I am following this closely as my husband is coming home today or tomorrow after spending 7 and a half weeks in ICU and another 10 days in a rehab ward with Covid. Me and my 2 sons are excited but also anxious like you as we don't know what to expect. He is coming home with oxygen as he still needs a tiny amount when he walks but I've had good support from a respiratory nurse so hopefully that will be ok. He is eating well and already given me a long food order! I've only been told he will need a frame initially so have not got anything else for him but obviously will if he needs extra support. He can't wait to come home! I'll let you know how it goes. All the best with your husband too x

Hi Keen runner,

How exciting for you! It’s like waiting for Christmas with anxiety thrown in. I got a few bits that were recommended on here; bed socks as slippers are too tight, aveeno moisturiser, lip balm and a portable urinal. I got them all from Amazon on next day delivery.

If you get a minute, I would love to hear how you guys get on. I’m sure many people on here would like to follow your story too.

I hope it all goes well and smoothly and have a lovely time being reunited with your husband. I’ll be thinking of you x

You may also like...