My Dad's Serious Medical Issues & Some Tough Decisions We Are Facing
July 6, 2012
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Now Reading: My Dad's Serious Medical Issues & Some Tough Decisions We Are Facing
July 6, 2012
Friday July 6, 2012 — 4:34pm. I just got home from the hospital where I was visiting my dad in the ICU
He has been pretty much out of it for a few weeks now.
Kyle and the wife are at an autism friend’s bd party.
So, since I have some time I thought I’d write a bit about my dad and what he and we have been dealing with these past 2+ years…
In June 2010 he was home and his Parkinson’s was getting worse. He had the disease for a few years prior and it took its toll. We had to take away his drivers license which wasn’t easy.
But in June 2010 he was deteriorating mentally, his appetite had decreased dramatically, he lost alot of weight, but more important or more troublesome he was deteriorating physically.
He was falling frequently and kept trying to go down to the basement to tackle silly little projects and the thought of him trying to descend stairs was SCARY.
He took a really bad fall in June of 2010 that put him in the hospital. The hospital sent him to a great rehab place. Among other things they tried to teach him the proper ways to get in & out of bed, wheelchair, etc. He was pretty resistant to some of the rehab and while in rehab they were tweaking his Parkinson’s meds which made him have some weird hallucinations and some anger/ rage issues.
Nevertheless the rehab place felt he was capable of returning home so in September of 2010 he returned home…for 4 days.
4 days of not listening and being resistant to things and not eating and being angry and FALLING a lot.
On the 4th day he had another fall that sent him back to the hospital and my mom, sis, and I realized that the nursing home would probably be the best safest place for him. So we scrambled around visiting lots of different nursing homes and we found one that we liked.
It wasn’t the prettiest, it wasn’t the newest, but to us it felt the most like a community. Lots of hustle and bustle, a coffee shop and a church on the first floor, lots of residents hanging out in the lobby and on the beautiful outdoor grounds.
We moved my dad to the 4th floor in September 2010 and he stayed there… for two days.
On the second day he tried to escape and was violent towards the staff. So much so that they sent him to the nearest hospital for “psychological evaluations”.
He stayed in that hospital for 2 days
and the nursing home that we liked called to say they would welcome him back, but only to a room on the 5th floor which was the
Alzheimer’s / Dementia floor.
We sent him to the 5th floor and it all appeared the same except that the residents on the 5th floor needed to be watched all day long and couldn’t come and go as they pleased
The vision we had of my dad hanging out in his room watching tv on his own or rolling down to the coffee shop whenever he wanted went out the window.
On the 5th floor unless they had someone visiting them residents spent most of their day in the 5th floor dining room or the 5th floor tv lounge.
This is not what we wanted for my dad cuz mentally he was more there than most of these people, but we had come to realize that physically he needed to be watched closely and because he was prone to sometimes being violent or sometimes doing something stupid (like trying to get up and walk to the bathroom on his own) the Alzheimer’s / dementia floor was the best place for him.
So there my dad stayed from September 2010 – June 2012. And while it wasn’t ideal and took a long time little by little dad got used to it there. He got used to the routine. My dad was a HS English teacher and he loved routine, always did. So he found the routine there. And lived by the routine there. My mom would visit most weekdays from 2pm – 4:30pm (after lunch til dinner time), my sis would accompany her 1-2 days during the week.
My dad’s younger brother would visit 1-2 days per week sometimes with his wife. And I would try to make it on Sat & Sun. (once in awhile with wife & Kyle).
I tried in the beginning to visit after work one or two nights a week. Swing by after 6pm. But that would confuse my dad and throw off his routine. And he would get agitated. They call this “sundowner’s syndrome” so I stuck to weekend afternoon visits.
To show you a bit about my dad and how much he lives and dies by the routine, most visits at around 3:45pm he would start getting antsy because he didn’t want to be late for the 4:30pm dinner time. The funny thing is he barely ate anything anyway what was the rush to get to dinner! 🙂 The Parkinson’s caused him swallowing problems so they would only give him ground up meals which he hated. He was 110 pounds the last time I remember them weighing him.
Anyway, last month he had a fall at the nursing home that led to him breaking his hip. They sent him to the hospital on June 12th. He had hip surgery on June 18th.
We were told that his hip was shattered and although surgery and recovery would be tough at his age & his stage of Parkinson’s not having the surgery meant that he would be in immense pain forever.
So we opted for the surgery. The surgery went well. They fixed his hip. But today’s July 6th and he’s still in ICU.
Basically every complication that could come out of a surgery like this my dad got. He’s got pneumonia and significant fluid on the lungs. They got him on one med to help with the fluid in his lungs and that brings down his blood pressure.
It seems like they solve one problem and cause another. Meanwhile my dad is being fed with a tube in his nose, is all drugged up, and when he is awake his speech is imperceptible. And the hip they fixed is just sitting there.
The doctors come in, give you a quick update and move on. This has been going on for almost 3 weeks.
Finally today a nurse came by, probably overstepped her bounds, and thankfully set us straight. Told us the hard facts.
She basically said that she was off for a week, came back today and looked at my dads chart and saw no improvements in that week.
We need to figure out a strategy. She said he’ll probably never be able to swallow again. So he’ll be on a feeding tube for the rest of his life. The nursing home won’t take him back with the tube down his nose. They’ll want the feeding tube that’s surgically implanted in his belly, but the cardiologists at the hospital won’t clear him for that procedure cuz his heart’s not strong enough. And the only way for his heart to be strong enough is to give him a pacemaker. And he’s probably not strong enough for that procedure either.
Basically this nurse was trying to say that we need to seriously talk about sending my dad to a place (hospital, nursing home) that specializes in hospice / palliative / “end of life” care.
My dad has a living will and has a Do Not Resuscitate / Do Not Intubate order in place.
So now that we know that things aren’t going to get better this seems like the smartest / kindest course of action.
We need to speak to the doctors and the hospital discharge person this weekend and discuss our options.
Thank god for this nurse. The doctors will never tell you this info. And I guess I thought that the hospital would have a social worker around for just this type of thing.
But it’s been 19 days since the surgery and my dads shown no significant improvement and until today nobody’s told us the straight dope.
Thank god for this nurse.
There’s a good well renowned palliative care hospital not too far from my folks house that we are going to look into.
My biggest concern if he goes there, and continues to get fed thru the feeding tube in his nose, he could conceivably hang on for weeks/months.
I’m afraid at some point we are going to be faced with the decision of stopping the feeding tube and in essence letting him starve to death. A decision like that is definitely not spelled out in his living will. But I see that as a decision we may be faced with in the coming weeks.
I’m not a praying man, but I’m saying a prayer that he goes soon, on his own, maybe even before we move him to the palliative care hospital.
Whatever god is listening, whatever god I’ve got the most clout with right now please take my dad peacefully and soon.
I don’t know why I’m writing all this down and I’m sure some family will read this and think I’m telling too much personally private stuff to the outside world.
But I just starting writing and this came out. And while this isn’t autism related i just felt like writing it all down (a) for me and my brain and (b) cuz maybe it will help others going thru the same thing and (c) maybe others who have gone thru this will read this and give me some advice.
I should write another post all about my dad soon. I got into all the medical stuff and didn’t tell you anything about the man. I’ll do that soon.
And boy i could write another whole post all about the mistakes we’ve made with nursing homes and medicare and protecting assets and working with your elderly parents and an elder care lawyer so you don’t end up spending all your life’s savings on this crap. We made every mistake in the book.
But that’s for another post. Today’s post is about my dad and his Parkinson’s and the decisions we have to make soon.
If you pray, pray that god takes him soon on his own terms so we don’t have to make these decisions.
Peace be with you. 😉
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).