HI,Posted previously about my Dad, he's making small slow improvements, very tired and says he's in agony (his hips and bottom mainly).
We can understand him now, but he gets so tired, and he's still so weak (can barely move). Still on Dialysis and tube fed, begging for a drink as his mouth feels horrid, he's in tears and so low , he's starting to loose his mind a little I fear.
What's the one thing you would suggest visitors bring in? That could help /motivate him? (As people keep asking me)...
And finally for those previously in ICU, what's the one thing you would tell yourself now if you could?.
Xxx
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Preciousfamily
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Some music that your dad enjoys, or someone read him a book. Maybe some lipbalm...lips always get sore in hospital. Some of the wash stuff your dad would choose to make him feel a bit better about himself.
I don't know of any of these ideas are helpful but keep hanging in there! Slow but steady improvements are steps in the right direction! Make sure you look after you too.
Yes! I came here to say this. Music would have helped me I am sure. The one thing I'd tell myself back then is to just relax and go with it and everything will be alright.
Music and/or audio books can be helpful. But you would need to manage a device for him. I wanted to listen to music, but was too weak to pick up a phone or tablet, put on earbuds or headphones, or even just push a button to turn it on. I couldn't even manage the swipe or password logins due to lack of coordination and vision problems, though I couldn't remember anyway. I ended up just laying there staring at the walls and ceiling trying to occupy my mind for hours and hours, days and nights, and yes, it is maddening.
We need people around us, interacting when we have the strength. As madonbrew suggested, I think reading to him is a great idea. The ICU is just as hard on the mind as it is the body.
What would I tell myself now? To tell my wife to find this forum and read what other ICU patients had been through. No one has any idea how difficult it is. It seems easy to have everything done for you, and physically, it is, but mentally and emotionally it feels like torture.
I convinced my physicians to let me go home early instead of being sent for another 2-3 weeks in a physical therapy/rehab facility because I didn't think I could take the loneliness mentally. They wouldn't let me out until I could at least get up and walk across the room, so it still took a while, but going home was a huge mental and emotional boost, and that helps physical recovery too.
Maybe just a little portable radio set to his favourite station with headphones that a nurse can easily turn on and off - I spend the month I was in ICU and awake watching whatever TV the nurses put on for me. It was something at least.
So sorry that your dad is having a rotten time. The thing that I loved the most was when I had more than one visitor and just getting to listen to them chat and share stories. It took the pressure off me trying to talk (I was stuck with a very breathy whisper for ages) and it was just nice to hear some normality. I loved having solo visitors too, but when it was my husband AND my sister in the ward it was the best. I was fortunate enough to have a relatively quick recovery and was granted phone access after a couple of days (after the crazy drugs has worn off), so getting messages from friends and family that couldn’t visit meant a lot. Also watching shows and films on an iPad… think I completed all of modern family 😅 and rewatched all the Harry Potter films too! Shows are a great way to kill time when it isn’t visiting hours. Have a chat with the nurses and see if that’s something they could help with?
If I could tell myself one thing now… it’s ok to take your time- it’s not a race to get back to normal. REST!!
I hope things get better for your dad super speedily!!
the team took me outside twice which was a massive boost for my morale - my dog came one time.
Just having visitors was important even if they didn’t talk ( sometimes it took too much energy to reply. I was desperate for a drink, wash my hair, brush my teeth, AND leave
I also found it hard to settle to anything. I spent a lot of time staring out the window.
I would talk (when I could) to people - that was the main thing that kept me going, so I loved visitors.
I loved bright, colourful cards that could go up on the walls. I loved those cards, they cheered me up so much in a sterile hospital room. My sister in law made me fabric flowers to sit beside the bed - loved those too.
Good call about lip balm and nice hand cream. The skin was constantly falling off my hands and feet. Normal not medical shower gel. My own or new pyjamas. Cosy socks.
It was good finally to be able to watch things on an ipad. A very nice family member put lots of apps on an ipad and gave me that. I started watching Shetland but that was a bit grim for me and then ended up watching lots of Clarksons Farm.
When I was in the last month of the hospital stay, we found out that my husband could take me outside in a wheelchair. We did that every lunchtime, found a wee sunny bit to sit in. I think that helped me more than anything, getting fresh air and sun and I felt more myself.
The one thing I could tell myself - well I knew I would eventually get better and get out of hospital. I don't know how but I just knew I would. I learned to accept the now and not think of the future at all. I discouraged anyone from asking me - what will you do when you get out. Living in the present and accepting it but knowing that this too will pass.
photos to remind him what's at home. Photos of his family and pets he may have. Give him a reminder and reason to keep going. Remind him that you miss him and need him home
Friendly talking, nothing to chatty or complicated.... photos of pets, garden, what ever was important to them.
Audio books... not sure.... I imagine for some, they would be very soothing, and a gentle background. For me I think it would have possibly added fuel to the fire of my delirium.
I really think this is very much down to the individual.
What I would have appreciated would have just irritated many people.
Also the circumstances at the time (middle of covid lockdown, a home a very long way from hospital) meant that apart from one visit to say goodbye to me ,as with many patients I had been more or less not expected to survive , I had no visitors at all during my time in ICU. I certainly had a horrendous few weeks but as bad as it was, as time has gone on. I wonder if my family had a worse time than me in terms if feeling helpless. I was experiencing it and with the help of medical staff coping as best as I could, but I sort if knew what was happening and during conscious times knew that however uncomfortable I was the only priority was survival.
What you will be experiencing is probably a daily report rather than ongoing experience and a sense of helplessness after seeing your dad in a frightening and worrying state. I had a list of things that had happened to me, many of which I was either unaware at the time or have simply gone from my memory.
On the receiving end I was definitely’somewhere else’ . I had was myself and what was happening in my head. Fortunately sleep or at least unconsciousness broke up the tedium,but even this was invaded by strange dreams,so you end up not knowing what us real what isn’t and what is a misinterpretation of experiences which you only have a few senses to interpret.
Somewhere very strange ,sometimes really frightening really uncomfortable but in a place where I made no attempt to hold on to any sense of normal life cycles. I was not doing anything,going anywhere,there were no meals to break the day up,and I never had any visitors and everything was a permanent semi darkness with the same sounds going on w4 hours a day. So I worked out with the little mental capacity that Remained, a way if accepting things as they were but has a sense that they could improve.
You are powerless and desperate to do something over which you have no power and only gave partial awareness if what us happening. So please don’t forget to be kind to yourselves as well as concerned four your dad.
I echo all of what’s been said above. It’s so boring in hospital, so anything to distract or entertain him. Audiobooks (but he may need help to manage it), photos, visitors and trips outdoors top my list. Maybe a kindle if he’s up to reading. Much lighter than a book and font size adjustable to make it easier to read.
It might depend on the ward/ room he is in but my husband printed off some large print photos of us and my little girl. He also put all my cards up on the wall so I could see them. Finally, he got a little message from everyone who got in touch with him to find out how I was doing and wrote them on to little heart shaped post-it notes and them put them on the wall as well for me. People could read one or 2 to me when they came in and was good when I was able to move enough to get near them to read myself.
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