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Some input for someone who just got into this

lemonbalm

Registered User
May 21, 2018
1,733
0
I’m very sorry to hear this. A slim chance is a chance at least.

Are you able to see him?

Please don’t beat yourself up or heap blame on your own shoulders. It does not belong there.

Thinking of you.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
I can see him, yes, if we make a request to the manager.
I am not sure we want to see him like this. We want to remember him like he was.
 

lemonbalm

Registered User
May 21, 2018
1,733
0
Your dad is in good hands and they will be doing everything possible. I am sorry that you are going through this and very much hope that you have encouraging news soon.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Just when I was reading this, his doctor called me. Not the ones from the hospital, his doctor which he went often and her opinion is caused by the delay of the operation. Staying in the hospital for over a week affected him emotional and lead to this.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Thank you. We are going to see him today at 18:00.

No change in his condition, just that he is awake. Gathering all the strength I can.

My boss is going to do a therapy session with mum tomorrow. Helping her cope. In her early days, she lived in Nepal with monks and stuff. Hope it will do mum well.
 

lemonbalm

Registered User
May 21, 2018
1,733
0
Whatever happens, I am sure you will be glad that you went to visit. I do so hope that your dad is recovering. Will be thinking of you.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Last night I made a request for a visit and mum was allowed to see him. Just mum, because of COVID regulations.
He is awake now, still breathing through machines, but very lucid. They communicated. Mum said he looks good, except for the wires, tubes, etc, he looks healthy.

Just one hour before the visit, we contacted the hospital where he was in July, with the same problem, water on the lungs. The current doctors needed the results from his last tests. They came back, negative. Negative means he has no disease, no cancer, no leukemia, no bacteria, no infection, nada. It was checked three times.
I am baffled.

Mum went there are worked on his morale big time, telling him his operation was a success, he is healthy, everything. My OH and I sent him love notes which he read.
He can breathe for just one hour alone.
Tomorrow or the day after tomorrow they will try again.
If in 7 days he will still be connected, they will try to make a neck incision for him to breathe through that.
 

lemonbalm

Registered User
May 21, 2018
1,733
0
I’m glad your Mum got to see him at least. Things sound cautiously hopeful. Keeping everything crossed for you and your Dad.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Really difficult days.
  • They did not disconnect him, instead, they made a CT last Sunday that revealed he had a small blood cloth behind/near his lung.
  • He was moved to the building next door where they made a small incision to remove it.
  • During those two days there he had the phone and we could talk, better said, write.
  • Was moved back on Friday and Saturday he was disconnected and breath on his own. Called Saturday also in the night and he was still breathing alone and finally ate alone.
  • Sunday morning called them and we were informed he was intubated again late at night. Same, couldn't breathe.
  • He is in the same condition, I reckon more agitated now because I think he had hopes he is well after staying almost one air like that.
  • They will make another attempt in the following days, but if it will the same they will make tracheotomy. Last resort, but not 100% convinced it will work
  • Still have no idea what is causing this. Had a chat with them without mum and they told me they suspect the hospital and doctors he went to before April ****** up. He is suffering for ages of ankylosing spondylitis and since February they stopped its treatment because the medicine it was in contradiction with what they gave him for pericarditis. It makes someone sense because the respiratory problems came later on. So the ankylosing spondylitis in pushing the lungs so bad it can't use them.
I am trying my very best to keep a good face on the surface, took mum in with us, but I am close to a breakdown. I have no idea how can I pull this through. I was ok-ish until Saturday morning, got my hopes up, and then when I've heard he was again intubated I nearly lost it.
I can't eat right for 3 weeks now, lost 6 pounds, I really feel horrible.

Ah, and things with grandma are a bit worst, but manageable.
 

lemonbalm

Registered User
May 21, 2018
1,733
0
I'm sorry to hear that your Dad is not doing well @JohnGroban . I hope that the next attempt is successful.

It is difficult to eat when things are so stressful. Just eat what you can, when you can.

Thinking of you and sending more virtual strength.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Thank you, @lemonbalm for your kind words.

At least the chances are a bit in our favour, small ones, but better. But if he does the tracheotomy he will not be able to talk anymore. And might be forever.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
Sadly, things are not good with my dad.
He is still connected to the machines, the tracheotomy seems that is not working (did it on Monday).

After the surgery I went to see him, this time just me and this time the first time for myself to see him live. The moment I went in my heart fell into millions of pieces. He has 40-45 kg. just bones. While his face was full of joy, I was dying inside. I cannot describe the pain I felt, I don't think anyone invented the words for such pain.
I could read on his lips: I love you.

The doctor said he doesn't know what will be next. If he will not breathe alone, he will stay like this until something else will happen: infections, kidney failures, etc and he will eventually die.

There are small good things like him being able to eat alone and solid food, or that he is optimistic, but that is about it.
That visit killed me. I cannot understand how all of this domino of bad luck happened.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,382
0
Kent
It`s so sad to read this @JohnGroban. It`s terrifying to hear how quickly some people with dementia can go downhill following an incident or episode which we all feel we would recover from.

Please try to look after yourself and your mum.
 

JohnGroban

Registered User
Oct 28, 2020
219
0
It`s so sad to read this @JohnGroban. It`s terrifying to hear how quickly some people with dementia can go downhill following an incident or episode which we all feel we would recover from.

Please try to look after yourself and your mum.
Thank you, Grannie G.
But grandma is the one with dementia, dad being like this is the aftermath of the tragedy, pain and scare of seeing grandma ill.
 

lemonbalm

Registered User
May 21, 2018
1,733
0
Sadly, things are not good with my dad.
He is still connected to the machines, the tracheotomy seems that is not working (did it on Monday).

After the surgery I went to see him, this time just me and this time the first time for myself to see him live. The moment I went in my heart fell into millions of pieces. He has 40-45 kg. just bones. While his face was full of joy, I was dying inside. I cannot describe the pain I felt, I don't think anyone invented the words for such pain.
I could read on his lips: I love you.

The doctor said he doesn't know what will be next. If he will not breathe alone, he will stay like this until something else will happen: infections, kidney failures, etc and he will eventually die.

There are small good things like him being able to eat alone and solid food, or that he is optimistic, but that is about it.
That visit killed me. I cannot understand how all of this domino of bad luck happened.

I’m sorry to hear that your Dad is still so poorly. It is very hard to see someone we love in such a state. The only thing I can think to say is to keep on hoping for the best and do it fiercely.

Will be thinking of you and hoping that you have encouraging news soon 🫂
 

JohnGroban

Registered User
Oct 28, 2020
219
0
I’m sorry to hear that your Dad is still so poorly. It is very hard to see someone we love in such a state. The only thing I can think to say is to keep on hoping for the best and do it fiercely.

Will be thinking of you and hoping that you have encouraging news soon 🫂

Thank you, Lemon.
I swear It could have been easier to know he has something bad that is causing this, not a mix of stupidity, bad luck and most of all, fear.
When his tests come back good, but he is dying under our eyes because of something he shouldn't, it really makes you think of how unfair all of this is and how every day is a nightmare because you can't get used to it because you don't know what is next.

And, of course, I think of what grandma said so many times (not knowing dad is ill): take care of him, that woman wants to harm him. Odd stuff.