I’m new to this site. My dad has been hospitalized for 35 days due to covid. He’s been on a ventilator for three weeks today and was trached six days ago. He’s been off all pain meds and sedation and his oxygen requirement has held steady at 70% for the last three weeks.
He’s not responding to basic commands since being off meds and he opens his eyes sporadically and moves his head from side to side. The doctors are not optimistic about recovery and are saying he will likely need, at a minimum, An oxygen tank the, the rest of his life. His bp and heart rate get a little labeled and they use pressors infrequently but have had to use them as of late.
I am curious as to what everyone’s experiences are with covid and this kind of recovery. My dad is 77 with emphysema, as he used to be a smoker but hasn’t in years. Was fine before this all happened. We didn’t even know he had emphysema to the extent they are saying. My family is contemplating terminating life support because we don’t want to put my dead through hell for the next six months. He would not want to be on a ventilator for the rest of his life nor would he want to be a burden to us.
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Shyder234
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Tracheostomy is thought to provide several advantages over intubation because it cuts down chances of infection, it is more comfortable for the patient, it accelerates weaning from mechanical ventilation - so your Dad might move onto CPAP & PEEP. A trachy, I’ve always seen as a way forward & positive.
There aren’t necessarily permanent either. I don’t have one although I was ventilated (in some way) for around 80 days.Many of us have had pretty poor prognoses from medical staff & yet we are still here & happy.
‘Burden’ is a very subjective description - I hope you get more clarity from this site as to the best way forward.
Thank you so much. The doctors keep asking us what my dad would want and if he would want to go through this long arduous recovery. I’m just not sure what the recovery looks like in light of all that is unknown about the disease. I’m not worried so much about the trach and the peg tube, as I have the same information as you regarding issues of comfort.
But I know my dad wants to be able to go to the bathroom on his own and be independent. I don’t think he would care if he was able to have a somewhat normal quality of life. But he wouldn’t want to be on a vent the rest of his life or wheelchair and housebound the rest of his life. For six months, it would be no problem. But we just don’t know.
Honestly, I don’t want to ever take him off but I don’t want to be selfish about it. The doctors are very grim in the face of all they don’t know. So it is just very hard to do.
Some members of our support group are yours Dad’s age & they have certainly found the arduous journey back from critical care worth it. Yes it is really hard work but worth every second.
My critical illness has impacted massively on my family & it continues to do so for all sorts of reasons - I have done everything in my power not to be a burden on them although they are restricted in how they live their lives because I fall under the bracket of being super vulnerable to Covid - so ‘we’ have to shield.
As I said before, I hope others respond to give you others perspective 😊 @FamilyHistorian
The Doctors will always give you the worst case scenario, many of the members on here have had the worst outcome read out to them , but have managed to go on and have fulfilling lives . My husband is learning to walk again after Covid, we knew we would have a long bumpy road ahead of us , we have.
He was initially unable to go to the toilet without me supporting him, he is now able to go alone. He still needs my support for a bath/shower, we know this won't be forever .
My husband doesn't like his loss of independence , but each week he can see he is getting a bit of his life back .
I wanted to get carers as I knew it would be hard work, the social workers asked my husband and not me, he didn't want them, the first 4 weeks were really hard work , but once we got into a routine things became easier .
Hang in there - it gets easier & easier as your husband’s strength comes back. It took us about 8 weeks to overcome the worst - gradually I have improved ever since.
Thanks Sepsur, we have had confirmed he has critical nerve damage to his lower limbs, also his heart ejection fraction has deteriorated since leaving hospital . It's his birthday today, a day we never thought we would see, so are very thankful .
I had serious neuropathy of hands & feet. Whilst I still have weakness in my hands -ie I can’t takes lids off certain things etc etc, the obvious nerve damage has repaired - apparently it takes nerves 1mm a day to repair. My feet took longer than hands ( maybe 2yrs) - atleast I can fully feel them now, no tingling or numbness.
I also lost muscle from every part of my body - over time it has strengthened & improved.
Remember your heart is a muscle - I left ICU with a resting heart of 130 - normally ( now) it is 53-6. It was rebuild as have the muscles controlling my eyesight & eyes - I would find my eyes for so tired too.
I am 72, I didn’t have Covid but before Christmas (November) as well as having pneumonia I had to have my heart valve replaced I was seriously ill, shall we say, my family were called in, urgently, several times! I was sedated / ventilated for 6-8 weeks, had a tracky, lost a tremendous amount of weight, I had no speech, I had to learn to swallow and to walk. I was very weak. I missed Christmas and my birthday and in fact I have just opened my last Xmas present whiskey chocolate and a small taster bottle.
Whilst I realise daughter father relationship is different I was lucky because my wife visited every day and once I moved out of icu she helped me showering etc etc. Everything I did was difficult and took so long not only that I had drag my friendly drip around with me. I came home mid March. OT visited, despite Covid, apart from the usual things I had shower chair and grab handle. Over a period of time I was able to do more and more myself. My wife constantly listens out in case I make any sort of noise.
Some of us, after icu, have experienced personality changes in my case I don’t necessarily appreciate risk I don’t need close supervision but maybe a wary eye. There are other things as well but we are all individuals.
Everything takes time but now I can boil a kettle and make a pot of tea safely. However I may carry each cup separately. I can also stand from my chair without supporting myself with my hands. All this is down to the support we have received from ICUstepschester a group that I joined at the beginning of June. On zoom we do chair exercises, chair yoga and have 2 support meetings one for relatives and the other more general. We don’t live in the geographical area of Chester. This website and the group are life savers that help moving forward.
My advice to your father is that indignity is just part of the way forward and look forward to the good things in life.
I'm only 56 and my wife was told to prepare for the worst a number of times when I was in ICU ventilated and sedated.
I've been home for 3 months and have progressed from being entirely dependent on my wife's care to becoming almost as independent as I was before Covid.
Please never give up hope! Where there's life there's hope.
We were told many times to prepare for the worse with my dad and he was ventilated for 10 weeks. We were told his lungs were so badly damaged that they didn't think the would cope without permanent oxygen.
He is now home with no oxygen support required at all, he is getting around on crutches and it will be slow but he will gain back independence.
Covid is such a horrible and completely unpredictable disease.
The doctors themselves just don't really know what to expect so if your dad is fighting then keep at it. It might be a long journey but hopefully you will find he starts to improve and the outlook will change.
I’m so devastated to report that he passed away last Sunday. We were able to be with him when we decided to let him go and end his suffering.
My father was my best friend and a truly remarkable man. If you knew him you were blessed, but to have him as a father was beyond a blessing. He put me through school, mentored me and we practiced law together for several years before he retired. We truly had a most unique and loving relationship.
I didn’t want to end support but it became clear that there was severe brain damage and his life would never be the same. And he couldn’t ever get off the ventilator as he had been requiring 80% oxygen and was declining even more the day we let him go. My dad would not have wanted that.
I am devastated. But I feel supremely grateful that god chose me to be his daughter. I don’t know anyone who had a dad like mine and his loss is felt by so many.
I'm so sorry to see your news, Your dad sounded like a wonderful dad and you were very blessed to have such beautiful memories . It's a very hard decision you had to make. In years to when it becomes easier, you know the kindest thing you did was to let him go.
So pleased you got yo say goodbye to him,but am so sorry again for your devastating loss xx
I am very sorry hear this Shyder234! You may have seen on my profile, my father died in Decmember but at that time i did not know it was covid as it was not in the media until Jan and then it all stated making sense! I could not be at my father bedside as i could not bear to watch him die but all credit for you and your family for being there.
I’m so sorry to hear this!! I did not realize your father passed. It is a terrible loss to lose a parent. One that I was hoping not to experience for a long time. I’m so sorry for your loss, as well.
Being at my fathers side was much easier than the six weeks prior when we couldn’t be with him. That was the worst part. Knowing he was alone and scared. That’s the part I can’t think too much about or I go crazy with grief.
You know i thought i was quite strong but when i arrived at the hospital on my last vist and i could see my father was no longer plugged up to the machines and they were letting him die, i had a huge panic attack, something i never really had before. I wish i could have stayed but i could'nt, i guess wanted to remember the way he use to be and could not take the reality that was in front of me.
I don’t think not seeing your dad pass away has anything to do with strength. You saw the reality and you suffered great trauma from it. I absolutely hate all the last memories of my dad and had many people advise against going to watch him pass. It is truly a double edged sword and I have no doubt your dad wouldn’t want you to feel this way.
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