Husband giving up!!

[Popsicle1]

Hi all, my husband is on week 8 of ventilator,3 of which are on trachy. Ventilation.He has a lot of muscle wastage and can barely move atm.He is fully off sedation and was doing well but has now started refusing physio and even the doctor wanting to examine him!! He mouthed to me the other day that he's had enough and didnt want to do it any more and wanted to go home!! It's heartbreaking ,I 've tried tough love but to no avail,I really am at a loss as to what to do!! I won't let him give up but how can I help him not to? I m so sad right now for him and for me.

[FamilyHistorian]

I had my trachy for over 2 months I think it might have been nearer 10 weeks. Have they tried giving him a voice box. It might help if he could communicate. Initially it woud only be for short periods of time.

Just another thought does he like dogs. Some hospitals have a dog visitor. One came to see me in ICU and again once I was in the ward. Really bucked me up and just for 20 minutes.

May be its the delerium that's speaking and he won't have any idea about that or what he is saying. Its difficult for the relatives as it is not obvious that he he delirious because he can speak (mouth) as if it is normal. I accused the staff of not caring for me so you really need to get the doctors perspective of this.

[Popsicle1 in reply to FamilyHistorian]

Hi,Thanks for replying.He tried the speaking valve last week but has refused it since He loves dogs but no dogs allowed in our critical care unfortunately.

He got really cross with me because I wouldn't take him out of the hospital!! I totally understand the boredom and effort he has to make to just do the small amounts of physio he's been doing but since Friday he's just given up!! I spoke to one of the doctors today about how down he is. I will have to look up the delirium and research it some more.I just hope he doesn't keep refusing treatment ,they are going to start vent breaks again so hope he just complies! He was such a strong person before covid hit him,always on the go at work (Eergency care/NHS).such a big strong man and I hate to see him so despondent,feels like I m losing him again,I feel like I did when we were at the beginning of this dreadful virus and he was sedated and intubated.The fear of losing him is back all over again.

[FamilyHistorian in reply to Popsicle1]

It’s not clear is just you he has told or do the doctors agree. The more I have thought about this the more (as in my case) it sounds like the delirium is speaking.

[Popsicle1 in reply to FamilyHistorian]

He has just told me and doesn't say anything about "having had enough" if the nurse or doctor is there.I told the doctor today about how he's been feeling.Not sure what they're going to do.She kept saying he was probably just tired and to see what tmoro brings!

[Copse77 in reply to Popsicle1]

I saw this when my brother was critically ill and gradually awakening after being in an induced coma. It is extremely exhausting for the patient and as another person said ICU is very bright artificial environment so it’s difficult for people to sleep or rest. Familiar things may bring some comfort like hearing your voice on the phone or listening to the radio or music he likes. Family photos.

[Grant_za in reply to Popsicle1]

Don't give up, and don't let your husband.

My mother was in isolation for 4 months thanks to a surgical infection.

She stopped cooperating with doctors (even her favorites), or she would pretend to be asleep.

Soon enough she stopped eating, and then started refusing treatment.

I need to add here, she was never under heavy sedation, ventilation or secondary life support - delirium was not at play.

In my mother's case, severe depression had set in - given her very recent hospital care history, it was no surprise.

Being in isolation or icu is not a great experience for any patient.

I had a psychiatrist see her, who then together with her medical team figured out what to give my mother.

All that was required was a mild anti anxiety sedative to "smooth out the bumps in the road" with a side effect of increased appetite - it was a double win.

Within days her mood had changed from depressed to "neutral", but also started nibbling on meals.

Your husband may be suffering delirium, clinical depression - or maybe even both.

Patients get very little sleep in an icu environment.

There is constant activity, patient alarms sounding, being turned etc etc - it never ends.

Sleep deprivation within a hospital environment is very real, but often overlooked.

[DonnaJ26]

Hi, my sister has been ventilated since the 9th of January, she has had down days too, we have taken an iPad to her so she can watch sky go. We video call every day, and now take it in turns so she sees a different face. She hasn’t really tolerated the speaking valve, but you can ask for a thing called a voice aid, it give them a voice which has definitely helped my sister. I have attached a picture below of the voice aid. Xx

Voice aid

[Dabofoppo]

This happened to me its very tiring and you do end up fed up with it and just want to give up what worked for me was my girlfriend gave me my phone and showed me photos from being on holiday ( I love to travel) and it kind of rallied me up. If it is delirium then the doctors may get an adults with incapacity form in place and give him treatment anyway.

My advice would be try showing him things he used to enjoy maybe get a close friend or colleague to give him a visit/zoom call try and give him a bit of motivation maybe tell him how things are starting to look like theyr opening back up etc.

[LeopardGecko]

My husband went through a similar phase and it was heartbreaking. We did find out a bit later that he didn't completely understand what had gone on and how much of a recovery he could make e.g. he thought he would never be able to speak again and this really scared him. So I'm not sure if it is worth going through a few things with him (not in too much detail) to let him know that they are temporary and things will get back to 'normal' when he is better. My husband had short term memory loss so I did repeat these things every so often incase he had forgotten.

Other things that I (and the hospital) tried:

Putting him near a window so he had something else to look at (even if it was just the sky) and also a sense of day and night.

Music that he likes playing in the background (I sent in a radio but the nurses also accessed music on their computers)

I sent a tablet in with Netflix, Disney+, iPlayer etc so he had a choice of things to watch. I also sent in a list of programmes that he might like so the staff could encourage him and suggest things to him (sometimes he was too down to want anything playing)

I asked family and friends to record short video messages which I saved onto a shared drive along with photos and videos of our son so he could access these on the tablet (he still enjoys watching these now after being home for 6 weeks)

I asked a few members of family and friends to write to him. I think he quite enjoyed receiving a letter talking about the outside world

I also Skyped everyday (when visiting wasn't allowed) and tried to remind him of how things will improve and gently encourage the physio etc.

We were also lucky to have a few outside visits which really made the world of difference. My husband had something to look forward to, it was a good change of scenery and he got to see our son as well. You could maybe enquire to see if there is a hospital dog that could join you on the outside visit (unless you have your own).

Everything in critical care is so hard for them and I know my husband felt like he had an impossible mountain to climb. He was also given antidepressants (not sure if this has been discussed for your husband or whether this is even appropriate for him) but I'm not sure if they really made a difference. I just tried to point out the small positive steps he had made to remind him of how far he had come e.g. when he first wiggled a finger to wave goodbye on a Skype call to being able to wave with a whole hand 🙂

[Tobyntess in reply to LeopardGecko]

I’m sorry to just jump in here. What caused him to be where he is now. I have been sick since oct of last year, now saying I have pots but they don’t know why or what caused it. I’m showing I have some sort of infection in which I am running low grade fever at night. Heart rate sometimes reaching 206 and I can’t breathe. I have lost 44 pounds and from size 12 pants to 4. It’s like I’m wasting away. No appetite major fatigue stomach pains, kidney pains, liver has lesions also but been to tons of doctors all of and nobody can seem to help me. Before I got sick I worked 60 hours a week as a travel CNA to boom I’m this sick amd in tachycardia most of the day. All I’m getting is I’m showing some kind of infection they can’t find and I have now developed pots due to it. But I showed blood clots in my pelvic veins and they are blowing it off saying they are common. I’m so lost I need relief and to feel better again. Anybody going through this? Also after standing a while I start shaking and heart rate soars up. I used to have seizures and when I stand two fast I start shaking like I used to before I went into a seizure

[LeopardGecko in reply to Tobyntess]

My husband had severe stomach pains which turned out to be Necrotising Pancreatitis. He was put into an induced coma and onto a ventilator as there was too much fluid in his abdomen for his lungs to work properly.

I would suggest you seek medical advice but you mention that you have already. Can you get a second opinion?

[NSMOD]

My family printed lots of photos of us and the nurses put them up on the wall. They followed me from ICU and then into the other wards. I am still in hospital now but every time I wake I see my family, every time I get down I use the photos to remind me that lots of people want me back. The best part is that many staff who come in ask about them and that reminds me that a lot of dedication and skill has gone into my care so far. Do I get fed up yep but this really helped me.

[Lauralou412]

Hello,

Oh it’s so heartbreaking for you to hear this. My husband went through similar, he has only been out of ICU 2 weeks today. It does sound a lot like he is delirious to me. They do tend to ‘slip in and out’ of delirium so sometimes they seem to make perfect sense or are able to follow up up on the delirium story even if they can’t follow real life.

My husband told me what kept him going were the family pictures around him and I took drawings from his granddaughters too. I tried the iPad with films etc but he wasn’t interested, just too poorly. FaceTime too but it became a bit like a broken record if getting him out of here same as your husband. He even told the icu team that we could set up a ventilator at home and not to worry! I do think because there is so much time, it’s easy to focus on one thing and it’s home because that where they want to be the most.

Stay strong and supportive and relay to the doctors what he is telling you so that they are aware.

He will get through this, he has come too far now. Also, if he hasn’t already, the speech valve is great if he is able and I made an abc chart so he can point out letters and words to help communicate- helps with the frustration of not being able to speak if that’s an issue too.

I hope he works through this. All the best to you both.

[Sepsur]

I can understand - I got to a point where I was so exhausted & peed off with being prodded & poked - everything they did hurt me. I lost faith that I would get out of there - kept picking up infections.

Maybe send him ‘survivor’ stories on you tube links?

youtube.com/watch?v=_N2ZWZs...(Not working as expected?) - not trying to self promote - its just the only one I have

[Livinglifeachday]

Hi, Mom mother has been hospitalized for over 7 months due to covid. She just recently got off the ventilator but still on hiflo oxygen. Due to her being sedated for 30 days when she was very sick from covid, she had extreme muscle waste (myopathy).

There was a point where she started refusing PT/OT and therapists decided to discharge her from their care. I was trying to figure out why she was refusing to get help. She was very depressed and did not want to do anything. After speaking with her doctors, they put her on anti depressive meds and that started to help her. She later told me that the reason she was refusing therapy or any help was because she felt so weak and thought she would never be able to walk again. I did have to give her some thought love, and that seemed to help a little as well. After many many months, she is now more motivated than ever (although she does have days where she feels defeated). She is still weak but now she is able to stand with the help of the walker.

It also helped that we talked to my mom about everything she had gone through at her sickest, how strong she has been, and how fortunate she is that she overcame the virus. This has made her think differently and have a different perspective on life. She knows she has been given a second opportunity of life and is determined to do her part to get better and stronger.

[Sepsur in reply to Livinglifeachday]

Hear hear

[Ferham]

Hi, I have just read this with a heavy heart, lots of brilliant suggestions here for you . It does sound like he is depressed , again quite common in ITU admissions . I hope you have had a much brighter day and things are improving.

[LoriB5]

Speaking as one who lived it, he also could be afraid and that's one way it's showing. I was in an induced coma for 54 days. When I (unexpectedly!) woke, it was terrifying. I couldn't speak, I couldn't move, couldn't think straight. I had no idea what happened and had to be eased into it slowly.

Also, recovering was the hardest thing I've ever done. EVER. That can be soul crushing and very difficult to get through emotionally and physically. The work needed to recover was intense. and it can be very depressing. Perhaps this may also be a part of what he may be thinking. ..? Just a thought. Good luck to you and I hope all turns out well.

[FamilyHistorian]

How is your husband doing