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My Dad's Serious Medical Issues & Some Tough Decisions We Are Facing

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…

My dad is 82 years old and has advanced Parkinson’s disease. I wrote a couple of other posts about Parkinson’s that you can read HERE and HERE

2 years ago we had to make the difficult decision
to put my dad in a nursing home. Ultimately it was my mom’s decision but it was tough on me (and my sis).

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.


The end.

Peace be with you. 😉

Written by

Frank 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” :-).

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34 People Replies to “My Dad's Serious Medical Issues & Some Tough Decisions We Are Facing”

  1. Anonymous

    We went through the same thing w. My dad….in some way comforting to know we are not alone in these choices….

  2. Jayne

    This is very raw for me. My Father has Dementia, I have just spent 3 hours at his carehome with my disabled Mother, daughter and son celebrating my Parents 55th wedding anniversary. It's a beautiful sunny day, we had all the usual party food, cute triangular salmon sandwiches, mini sausage rolls, fizzy wine and and a jam sponge cake, all laid out perfectly in an English country garden. I've arrived hime and want to cry my eyes out because my Father had no idea who we are or why we were there. I to pray he doesn't have to carry on like this for to much longer.

  3. Anonymous

    Nurses–living saints

  4. Anonymous

    So sorry to hear about this. Ask the ICU docs for a family meeting to discuss "goals of care." You want to get information on both hospice and palliative care (they are different). I had written a whole post but somehow the computer lost it, so I'm doing to quick version.

    I work part time as a hospice social worker in the field and I work part time on a Palliative Care team in the hospital. Your facing a difficult decision and need direction/information/education about your options. It sounds as though you're doing the very best you can. This is one of the most difficult things you'll ever do, but your dad did give you some direction in his living will. Keeping someone alive with artificial nutrition and hydration can cause it's own set of problems. Talk to the docs about it and tell them to be honest with you so that you can make an informed decision.

    Please keep us informed and thank you so much for your openly sharing your thoughts and feelings. You've helped me more then you know (we are raising a 4 year old boy with autism) and I wish I could do something to help you.

    Take care!


  5. Anonymous

    Hiya AD my mum had to make the same heart breaking decision last year the only thing that was keeping my nan alive was her intravenius line on the 14th of april 2012 mum decided it was time to stop all treatment at around 10 pm that evening my grandmother passed away at 2 am on the 15th april 2012 it was the same day I had my second son my mum feels really guilty for doing it but she just couldn't watch my nan suffer anymore you as a family will know what to so when you are ready will keep you in my thoughts xx

  6. Bernadette

    Wow, your plate is full! His living will is a gift. His proxy is the person he chose to make the decisions he would make. Give him permission to die. If he feels that there is unfinished business (good-byes?) he will linger. Like Kyle, he might understand even if he can't communicate. Above all, give yourself time to grieve, especially in advance of his death.Peace to all of you…

  7. Tammy

    prayers for you and your family.
    There is no greater love than to let someone go when all you want t do is hold on to them.
    Hospice nurses are the best….they will help you thru this….
    Keep you memories of who your Dad really is in your heart and they will bring you comfort.
    Can't wait to read your post when you tell us all about your dad, he must be a great man because he certainly raised a great son.
    Prayers, love and hugs coming your way…..

  8. My Dad died of cancer 4 years ago, and we also made some very difficult decisions about not giving him any more IV fluids. This basically was a death sentence as he couldn't eat or drink at that stage.
    He was very comfortable on morphine and anti-anxiety meds, and I know we did the right thing. That didn't make it easy at the time tho.
    My thoughts are with you. XXX

  9. My thoughts and prayers are with you in this difficult decision. My father-in-law also had Parkinson's and was in a nursing home for a number of years. He loved his routine and we would always have to visit in the afternoon and roll him down to be in front of the doors before dinner started. He ended up in the hospital for dementia incidents occasionally. It was usually due to dehydration and an electrolyte imbalance.
    My husband's family had a time where they needed to decide about a feed tube. Dad did not want one and understood that he would not live long. All the nurses who had seen him for years talked to the family and Dad and tried to encourage palliative care. My husband and I were on Dad's side. We wanted to follow his wishes and have him be comfortable. Other family members gave him empty promises and he had the feed tube surgery. He was uncomfortable and unhappy after the surgery. A year later, he needed the tube replaced. It was supposed to be a simple surgery. He got an infection at the hospital and gave the fight of his life. It was truly awful watching him in the hospital with the infection. We were there every day for 7 weeks until he passed.
    Now, looking back, my husband's family wishes they would have never done the feed tube and went with Dad's wishes.
    Dad was 80 years old when he passed and his wife had passed 9 years earlier.

  10. Anonymous

    my thoughts are with you and your family I'll say a prayer and like you, hope that some god is listening and will take your Dad's pain and not make you face the next few steps ahead. xox


  11. Anonymous

    My Dad had no feeding tube in his papers. I got much heat from drs. Anyway. Hang in there I'm praying.

  12. Anonymous

    That is a very brave post to write. I am praying for your father and for your family. Angela

  13. Stephanie

    This is so difficult. I pray for your family. I went through a similar thing with my mother five years ago. Within 15 minutes of moving to hospice care my mother passed away. I miss her dearly!

    My father is currently in a nursing home and has parkinsons and I wonder the same thing. He had open heart surgery three years ago and his parkinsons has been quite agressive. I went to visit him and he didn't know who I was. . .this was quite hard for me. I think of the life he has and it is sad. I wish I can visit more often and maybe he would recognize me but probably not,

    I will pray for your dad and your family. and God Bless.

    I visit

  14. Anonymous

    My thoughts and prayers are with you and your family. Such a difficult time and what to do? Sometimes it takes an outside party to see what we cannot. Kudos to the nurse to discuss such difficult things. My Dad had a "reading of the will" (8 years ago) with me and my 4 brothers and died 8 weeks to the day. We knew he had some kind of cancer but was too weak to test his kidneys and lungs. We did meet with a Social Worker from the Hospital so yes, turn to them to help you make some informed decisions. He was diagnosed with lung cancer on a Friday and I was alone with him the next morning when he had a massive heart attack (didn't know it at the time) at the hospital. We had to make the decision to take him off Oxygen and give him a morphine drip; the Dr. said it was a matter of quantity of life or quality as his lungs were filling with fluids. So what we thought would be weeks of slowly going downhill turned into one day. I saw my Dad go fast and my Mum go slow; I honestly couldn't say which was less painful. However, I am glad you wrote and look forward to hearing more about your Dad. Peace to him, you and your family. Mary

  15. jessie

    Very Sorry for you and your family. I will be praying for peace for your father.

  16. Anonymous

    I, like you, am not a praying person. I do feel as though there's something about not watching the ones you love suffer. My grandpa died a week ago. He had Stage 4 lung cancer. He hurt and suffered almost everyday for a full year. He did not go peacefully. He suffered through it all. We watched him die basically. I hope and pray (I do for no more pain) that he does go soon and peacefully. I watched my grandfather gasp for air for almost 2 weeks. I begged (God) to just take him, end his pain. The last person to tell him to let go, was my Dad. When he did, he let go. Maybe you need to tell your Dad that it's time. He can hear you, whether you think he can or not. Letting go is a hard decision, but you know he would no longer suffer.

  17. Anonymous

    Thoughts and Prayer Autism dad …

    Angelzmom/kristian 🙂

  18. Rosie Calabro

    My heart and prayers go out to you at this time. I couldn't imagine having to make a decision like this. I just watched my best friends family go through the same thing. Although, the decision is a difficult one sometimes watching them like that is harder than making the final decision. I will you family and you all the best at this difficult time.

  19. Anonymous

    Talk to the Hospice Nurses, Social Workers and other staff at the palliative care hospital. They can give you information on end of life decisions and the many questions you have. The special people who work in this area are compassionate and offer support for families in your position.

  20. Anonymous

    My thoughts and prayers are with your dad and you and the family.

  21. I know how you are feeling …I have a non verbal 2yr old with autisim also a few months ago my grandma passed away she was 92,I took care of her in my home for over 10yrs she had alzhimers & dementia…last Sep I had to place her in hospice it was the hardest thing ever but she passed away peacefully. Visiting nurse service is great we got great counciling and berevement therapy for the family. I wish you all strength in this rough time.

  22. Anonymous

    You are so not alone in this. My mother died of cancer some years ago. All she had at the end was her IV and she lasted for six weeks. I'll never forget it. She went peacefully. I'll pray for your dad. Nancy

  23. Steve

    I am so sorry to hear about your dad. I can relate to the tight spot that you're in with this situation. My thoughts are definitely with you. My own dad is 87, has COPD, heart issues, but still relatively active and cognizant. He mainly needs some slight supervision. Fortunately, he does have a living will, which states basically, that he does not want to depend on any machine to keep him alive. He and I went through those tough decisions with my mom after she had a brain tumor rupture that left her in an irreversible comma several years ago. Dad looked to me to make the decisions on removing the feeding & breathing tubes. The drs assured me that she wouldn't suffer with these things taken away because she was on so much medication to keep her comfortable. It did make the decision slightly easier. She lasted a little over a week. It was the obvious combination of relief and sadness when she passed, but I have to say, it was the kindest thing to do for her. I guess all I can say for you is that you should follow the "spirit" of your dad's wishes as he set out in his living will. I hope you can take comfort in knowing that you are definitely not alone in this.

  24. melissa

    my thoughts are with u and ur family. i know its not easy to think about stufff like this. hospic is good and they will help a lot. it was nice of that nurse to come out and tell u that. the drs usually leave it to them to break it the family and im very happy she was nice about it. some can be very cold and rude. i hope the rest of his journey is fast and pain fee as it can be.

  25. That's a heavy situation. I am so sorry. It's good that the nurse was brutally honest and gave you some info, however painful it had to be to hear it. My dad has Alzheimer's and while he's only 61 we're having to urge my mom to make some tough decisions about his care. It's hard having those conversations, especially when it involves your parent. Hoping for peace for your father and family.

  26. Anonymous

    I did go through something similar to this. My dad lived 250 miles from me. He was taking care of his sister who has alzehimers. He was 83 and she 79. His health was starting to fail him. He had fallen to the floor for no reason. Finally I got him up here to live with me Nov. 2009. I got up Thanksgiving morning only to later discover he had fallen in the night. Did not get me up, took him to the hospital. It was his heart, he got a pacemaker put in. He comes home a week later went back to the hospital with pneumonia. A couple days went by and he coded. They intebated him, I wasn't there. He recovered some from this episode. They removed tubes and he was okay for a couple of weeks. But then got worse, his lungs filled up. The doctors drained them, his blood pressure kept going up and down. He was confused but still knew me and my brothers. He barely would eat and they put a feeding tube in his stomach. The hospital told me he was well enough to go to a nursing home. So I found one near me. In my opinion he was not well enough to be moved. But we all know how inurance companies are. He was moved by medical transport to the nursing home Jan 13, 2010 he passed Jan 16, 2010.
    It makes it so much easier if we know there wishes. I later found a living will with DNR. I'm so glad I wasn't the one who made the decision to recesitate. As much as I wanted him to recover he is in a better place.
    Just take one day at a time and pray things will fall into place.

  27. Anonymous

    Praying for all of you.

  28. Anonymous

    I know how you feel. In our situation a doctor finally told us we were prolonging death, not life. I pray that your family's suffering will end sooner rather than later. And I am anxious to hear more about your father, when you are ready to write it!

  29. It sounds like your dad is a man who would want to leave this Earth with his dignity in tact. I am very thankful that I have all of my parents (4 due to step parents entering the picture many years ago) but I watched my husbands mum go from healthy to bedridden in a fairly short period of time. She entered hospice the day after James was born and she passed away 8 months later at home and on her own terms. It is never easy to face questions like the ones you are facing and not knowing where your mum is on her journey, there may be no right answer. I hope you and your family find peace.


  30. Anonymous

    Don't apologize. It is hard to watch your parent deteriorate. I have watched my in laws passed away from cancer. One went fast, one went slow. The hardest thing for me is watching my mother deteriorate. She was diagnosed with M.S. twenty years ago, the last 5 years have been the hardest. She's not the dynamic person she used to be. We aren't making the decisions you are faced with now, it is always on my mind as the disease gets worse and my parents are getting older. My thoughts and prayers are with you and your family.

  31. Anonymous

    I watched my dad deteriorate and die with cancer a couple of years ago. I feel for you.

  32. Can't imagine AD. I would never want to have to go through all you have in the last couple months between the King and Dad, but thank goodness for your goodness and wisdom. You're a helluva man and rolemodel to all the rest of us (fighting)middle-age Dads. Thank-You. You Rock. Sending you "happy thoughts" and/or prayers to you, your father, and the rest of your family in this time of transition. ~M

  33. You've got my prayers, AD. Much love to all of you from WA State.

    1. This is all to uncannily familiar. My Dad lost about 50 lbs in 4 months, was in and out of hospitals, etc.

      We tried to take care of him at home, but finally moved him into adult care 3 days before Christmas.

      It is a huge drain every month on income. Perhaps, we need to consult a lawyer (again!). Have the power of attorney, trust, living will, etc. Maybe there is more we can do.

      Please keep us posted.