My 88 year old Dad fell down the stairs 2 weeks ago. Because of blood thinners our immediate concern was the bleeding. He lost so much blood I was told he might not make it. The hospital put him on a ventilator because they feared he would swell up and not be able to breath. Many transfusions later he stabilized. We were told he fractured his spine and jaw and would need surgery. We agreed to that and to the ventilator being left in place until after the surgery. This happened on a Thursday. He was alert and moving everything when he went in. I expected surgery would be ASAP but it was the weekend and apparently they don’t work on the weekend so I expected Monday that turned out to be a Holiday. They don’t work on holidays. That’s 5 days on the ventilator already. On the 3rd day They totally sedated him his arms and hands swelled up unbelievable they told me that’s normal due to the trauma.
Tuesday he was scheduled as an add on @ 4:30. At 4:15 the surgeon came up and told me some of the equipment in the Operating room was contaminated and they didn’t have 2nd set available. They rescheduled him for Thursday. Respirator is in for a week now.
830 the night before surgery the surgeon calls and tells me they can’t handle this and tell me he should be moved to a level 1 trauma center. I had asked them after the first few days if he should be moved they assured me they could handle it.
So Thursday night we moved this poor sedated but aware shattered man to another hospital.
The sedation again was stopped.
They tell me he’s unresponsive because he won’t squeeze their hand when told to.
His hands are sooo swollen no one would be able to make a fist.
I have told everyone a million and ten times he’s profoundly deaf without his cochlear implant device hooked up. He also needs to read lips - can’t do that with a mask on.
They keep trying to talk to him and when he doesn’t respond they want to pull the plug. What is wrong with these people don’t they understand what DEAF MEANS.
I go to him he locks eyes with me, I calm him I put his hearing aid on pull down my mask and tell him what’s going on. The panic in his eyes settle down they see he’s responsive and still in there.
We now focus on removing the breathing tube. They shut it off and he can breathe on his own. But his lungs fill with water every time. ENT scopes him and find his vocal chords are not closing which allows water into his lungs. Again The doctor suggests I I pull the plug. I opt for the tracheostomy.
In the mean time his swollen arms are now oozing water soaking his bedding. They finally decide to check it out and the problem is blood clots. They give him heparin and the next day the swelling is significantly down and he’s able to move his arms and legs again. He squeezed my hand yesterday.
My major frustration is that I feel all along they want to write him off because he’s 88.
They tell me all the time like I’m not aware of that. They delay and postpone his treatment for ridiculous reasons. We are now at the hospital for more than 2 weeks.
He had fought off the infections They tell me he has no nerve damage in the back. They tell me the vocal chords should be able to recover. His vitals are perfect, no brain damage no other health problems. He was living a happy life with his wife of 70 years. The problem is he’s 88
So I have to make his choices for him.
I am not trying to keep him alive HE IS ALIVE!! The delays, equipment malfunctions and the hospital mentality are killing him ..
He is scheduled for a very long spinal stabilization surgery on Tuesday- He might not survive it, but I think he would rather die trying...

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Put a BIG sign above his bed saying DEAF. This is not age discrimination, this is a Disabilities discrimination.

I go thru this every time my 73 yr old DH is in a hospital. The info does not seem to get from one shift to the other. Or even nurse to nurse aide to aide. You need to talk to the doctors and the DON. Say it over and over. HE IS DEAF. HE CANNOT HEAR YOU WHEN U SPEAK. TAKE THE MASK DOWN, HE CAN READ LIPS!!!! I have told one of the nurses in a doctors office to put a piece of paper in my husbands folder and make it the first thing the doctor sees "THIS PATIENT IS DEAF". Because he was always looking down and my DH couldn't see his mouth.

My DH does hear a little with a hearing aide used in his right ear. But you need to be on his right side because he is completely deaf on the left. So where do the doctor or nurse stand. I go with my husband so I keep telling them to switch sides.

It really is a shame that our Deaf need to go thru this. And I am serious about the sign. Put "Deaf, please remove mask to talk, can read lips" Seems extreme I know. But staff is not informed even when in his record.
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GardenArtist Oct 2020
JoAnn, excellent points about deafness, and the still unfortunate discrimination today.     In a medical setting, that's just soooo wrong!
Good insights and advice from those who've already posted.     I'm thinking there are a few other issues here:

1.    Is this hospital a for profit, or nonprofit?   I just searched and found some hospitals in the Centerport, NY area, including Mt. Sinai Hospital.   If your father is experiencing this kind of treatment at a Sinai hospital, I'd be very surprised.

2.   Hospital size, beds, staff, etc. all can factor into a plan of care, but I'm sure no one is going to address this very frankly with you.     And as you probably know, there's an upsurge of new COVID 19 cases.  Those ICU beds may in the opinion of the staff be needed for COVID patients (including younger ones, whether or not they've been practicing safe distance and masking methods.)

3.   Beds may be scarce; I think triaging comes into play in your father's situation, just as it does in (military) field hospitals.    Sometimes the lead doctors make the dominant decisions.  

What you can do:  

A.   Continue your path of inquiry and representation for your father, but step it up by taking notes, extensive notes, and asking questions.   I did that, extensively as well, and eventually the good medical people understood my position and why I did it, as when I returned, I often had more questions (if my medical friends couldn't answer them first) and proposed options to discuss.

But I could tell some of the nurses were concerned, as I overheard one telling another, in a worried sort of tone:  "she's taking NOTES!"    Next time I saw one, or it might have been a doctor, I said that I take extensive notes so I can go home and research the issues, returning with a better understanding of the issues so I wouldn't have to ask them to explain.

B.    This raises your participation level enough that concern might develop as to their apparent short term negative assessment.     And it also puts you more in a position of participating as opposed to just having accept or question.

C.    Document and question the delays; a hospital that doesn't do surgeries on the weekend sounds suspicious to me, but then I'm not a medical practitioner.   And I'm used to large chain hospitals, some of which are religiously owned, others were nonprofits.    

That changed when business (?) people acquired the hospitals; actually, the whole mission changed then.  Staff were laid off, remaining staff may have felt overworked and sloughed off, care declined, and who knows how many patients  may have experienced something like you have?

(I am relieved thought that they've trached him; the ENT specialist for my father's long hospitalization told me that normally they won't keep a patient on a ventilator for more than a week b/c of potential repercussions, and that was the reason for traching Dad. )

D.   Another aspect about which you might inquire is the presence of long term care hospitals, such as Select Specialty.   That is where Dad spent a few months b/c he was unable to  speak when he was initially trached, unless the speech pathologist (or therapist - I don't remember which) was present and made some adjustments (I never figured out what those were, but it had something to do with positioning of an access in the trach tube).    He went through extensive speech therapy before he could eat and  speak again.  

E.  I also made up charts by which Dad could point to express his needs.   He couldn't drink or eat, but he need to have stims to moisten his lips.   That was on his chart, as well situations like being too cold, too warm, wondering when I would be there, etc. 

Being incommunicado is a tremendously negative experience, so one of the foci was how to create a situation by which he could communicate w/o speaking.   So I brought in a spiral bound notebook, tied a pen to it, and left it so he could also write out questions when I wasn't there.

RQ, I think you're a strong, dedicated and caring person, and I hope my experiences can offer insights to help you and your father.
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RQ, I spent my life as a nurse, so you will have a hard time convincing me ever that "they don't care; they only see an old man sitting in the bed". I WILL tell you that I see, I witness now, and I am told by young RNs that the mechanization of everything has robbed them of seeing their patients in the human way we used to, that their eyes are always on the machinery and have had patients say to them "Hey! There's a person here!" It is interesting for discussion. I still remember patients BY NAME with tremendous love, and their families as well. Even Stella, who used to take whacks at me with her cane. I wish you the best staff ever created.
I will tell you also that NO ONE can care as much as you can. If family is able to be there, once out of an intensive care situation, ask for cot or easy chair/bed and try to spell one another.
What fabulous news to hear of this improvement. Whatever the ultimate outcome, and I know that YOU know the bad position Dad is in here overall, YOU have been the most wonderful thing in the world for your Dad. There is nothing like the advocacy of strong family. So know that while staff may at times look at you with great consternation, they ALSO know that YOU are who they would want in their own corner.
Thanks for updating us. So often people don't return to say a thing, and we appreciate it. Holding you and your family and esp. your Dad in our hearts.
Helpful Answer (8)
GardenArtist Oct 2020
Alva, your love for nursing shows through; thanks for sharing these insights.
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He is perhaps "alive" but with the help of heroic and artificial measures. It is unlikely he would be alive without their assistance. Has the medical community suggested to you that he is in heart failure? The fact you describe fluid in is lungs may indicate/probably indicates left heart failure, and in the peripheral extremities, arms, legs, hands, indicates right heart failure. That means his heart pump is failing.
Whether we are 8 years old or 88 years old we cannot live without a functioning heart pump.
Whether we are 8 years old or 88 years old we cannot live without functioning lungs.
The next major system that goes down will almost certainly be the kidneys.
You say "I think he would rather die trying". Actually ventilators and resuscitation are torture, so I will ask you to be certain, not the "think". Has your father told you he wants all measures including CPR which would serve only to shatter the bones of his chest, and ventilation, which keeps him a prisoner who cannot even express the pain coursing through his shattered body?
Be certain you are not fighting to keep your beloved elder with you, rather than bowing to the grace that comes to us all when we pass from a peaceful, loved and long existence into what awaits every living thing.
It is unlikely that jaw surgery will be done while intubation is needed, and intubation with a fractured jaw? I quite honestly cannot even imagine the pain. I hope you dad is being kept well sedated, because at present he cannot contribute to discussion of his pain level.
I am sorry for your pain. I tell you these things as someone who spent her life as a nurse.
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RQ (((((hugs))))))))!!!

Wow, you are an amazing advocate for your father. I'm so glad he has you!

I think the first hospital sounds incompetent at best.

Right now, you are dealing with medical folks who don't know your father. Your job, (and you are doing a great job of it) is to make sure they know your dad and give him the consideration he needs.

It seems that there are a lot of comorbidties going on right now and that makes treating the individual problems more difficult.

I am hoping for a good outcome for your dad's surgery.
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rovana Oct 2020
I guess I would want to know what the actual outcome from the surgery would be.. I don't see in the OP's post that that has been discussed. Everyone has to decide from themselves, but I would rather die that be tied to a ventilator, intubated, etc. etc.
Ran out of space..... I do think there is some age discrimination taking place, but it  could also involve being overworked, spread thin, and exhausted from care for patients with COVID 19.   Still, I think age is the primary factor here.

I think you have the courage to ask, very sweetly, if the "care plan" is how a much younger patient would be "cared for."    Be aware that you'll put someone on the spot; do it with a doctor as opposed to a nurse.    It wouldn't hurt to have a friend or relative as witness. (I did.)

During one of my father's last hospitalizations, a hospitalist, not an independent doctor, was assigned his case, along with a few newbie residents who had what I consider a typical younger person's attitude toward older people.   

One was a bimbo who kept telling Dad that he'd "had a good life" and it was time to accept that it was at an end, and he should agree to allowing them not to provide typical care if he segued into a pre-death mode.    I was offended that this baby doctor had the audacity to "counsel" someone who lived through the Great Depression, WWII, and more.  

So when she wouldn't shut up, I told that I thought she was overstepping her bounds and had no significant experiential basis for anything she was saying, except personal opinions.  I added that I planned to ask for an independent doctor to replace the hospitalist team and didn't expect her to be involved in any further "care" for my father.   She got the message and scurried out of his room.

And that's what I did.   I wouldn't hesitate to fire another doctor if I had to.
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Wow! You and father have been through way too much already, and a lot of it sounds like it has been uncalled for. Thank God you were there to calm him and explain to him what's been going on.

It's heartbreaking to hear of someone his age being treated so poorly, but sadly I'm sure it goes on more than we know. I would suggest keeping record of everything that he's been through, and if need be, you might want to talk to a lawyer when it's all said and done.

I know that when my husband was in the hospital over the years, I had to stay on them all the time, because my husband had had a massive stroke years ago, and his speech was very impaired, and they didn't want to take the time to try and figure out what he wanted or was trying to say. Even when my husband was under Hospices care for 22 months, I had to stay on them all the time as well, to make sure my husband was receiving the care he needed and deserved. I think in their case they thought, well he's going to die anyway, so why bother with this or that. My husband was only 72 when he died almost 6 weeks ago now.

I'm glad your father has you in his corner. You are now his advocate, so stay strong and make sure he gets the care he needs and deserves. Praying his surgery on Tuesday goes well.
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Alva, your observations on nursing brought to mind what my niece has shared with me.  Sometimes nurses are treated poorly, sometimes abusively, but they still have to perform their duties, and chart those actions.

Your comment on mechanization is interesting, and could reflect a growing change from interaction with patients which could be detrimental to both sides.

I think the friction can also arise when hospitals are reconfigured from nonprofit to for profit ones.    A lot of employer/employee dynamics are affected by these changes, and the nurses often are the ones to feel the negative impact of greed.

That standard of care unfortunately doesn't apply to a lot of professions, politicians most prominently, although I'm not sure any standards at all exist for some of them.
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As long as your dad is actively supporting his desires through his communications with you, I can’t imagine why you’d consider do anything on his behalf other than what you’re doing now.

I can’t imagine this, but is there any possibility that there isn’t anyone employed by the hospital who can support his needs for assisted hearing?

My former HS band director passed on during a surgery that he DEMANDED be done, at 95. Those of us who knew him were fully aware that if it hadn’t been done, he’d have looked for another place to do it.

One man of 88 may be totally different from another. Please continue to proceed on his behalf to support whatever HE thinks are best FOR HIM.
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RQ, I will be thinking about your dad today. Hope the surgery goes well!
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