Caregiver to my grandpa. Could hospice affected his passing?

My grandfather passed Friday, September 8th at 12:21am.

He suffered from stage 4 lung cancer. He was diagnosed last August and refused chemo and radiation. My grandmother is 82 and has trouble caring for herself. She has a HHA come twice a week, so they wouldn't let my grandfather come home without someone there to care for him. 

My grandfather and I have always been very close as I spent the summers with my grandparents since they lived 3 hours away. I lost contact with them for awhile because of my own selfishness. 

My nightmare began on August 23rd when my grandpa called me on the phone crying at the hospital because they told him they don't think he'd make it through the night. He went in with a collapsed lung and pneumonia. Well he sure did make it through the night and I raced to be with him the next day. He refused hospice the whole time because he wasn't ready to face the reality of dying since his whole side of the family passed from some sort of cancer. He was doing well until Sunday August 27th when the doctor had told my family that my grandfather was only looking at a couple more days due to his shortness of breath and them having to raise his oxygen to 15 over night. We agreed for him to come home under my care through hospice so he can die at home.

He came home Tuesday, September 5th beating the odds of the doctor thinking he wont even make it to Tuesday, but my grandfather was such a stubborn man. He was going to make it home. We got him all settled in and he was his normal self to me until the hospice nurse started him on morphine every 2 hours. To me it seemed like too much, but maybe to him it was helping. The doctor told us that upping his morphine would slow down his respiratory and speed things up. I wasn't happy about it, but I wanted him to be comfortable. Wednesday night he screamed for me and it scared me to death saying he was having a hard time breathing. So the nurse told me to give him ativan and a dose of morphine. He seemed to be okay and even through Thursday he seemed fine. At 1030 I went into his room to give him his medicine and told him i'll be back at 12 to give him his breathing treatment. Something didn't seem normal to me when I woke up from my nap, I didn't hear him. I got up from the couch in the living room and walked to the bedroom to find him in labored breathing and his nasal cannula on his forehead and the way he looked I could tell he was about to pass. I called his name a few times and he was unresponsive and cold. I called my mom and got my grandma up and as soon as my grandma held his hand for a few moments he stopped breathing. It was almost like he was waiting for my grandma to be with him.

I don't sleep at night anymore because all I can think of was the way he looked. Always questioning my moves that night. Did I not hear him because I was asleep. Should I have stayed in the room with him to make sure he didn't take his oxygen out. Did hospice give him too much morphine. Why didn't hospice bring me another mask, but I don't think it would've helped at all. hoping I can find someone who was a care taker and that can relate to my story. 

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Meghan

I am so sorry for your loss. And your entire experience in this terrible loss.

I was the main caregiver for my father in law. He had Alzheimer’s and his situation was a long agonizing experience.

At the end, he was in hospice at home for about 3 months. He died in my arms, gasping for breath with fear in his eyes.

I actually have a lot of experience with Hospice. I am a spiritual care provider for the sick, and those who have suffered loss, and I have been in the room more than I care to remember when some one has died. It is NEVER like on TV. It is rarely peaceful. It is often exactly as you have described your experience.

Your experience is not unusual. First, what you described is the normal Hospice protocol. They are mainly focused on palative care. They are not there to extend life. They are there to ease pain and make the patient as comfortable as possible. They are only there because it is a terminal condition past the ability to treat. I know that’s hard. Many people resist Hospice because they can’t face that reality.

Second, it sounds like you did a GREAT job for your Grandpa. You obviously love him very much. And you were there at the most critical time. Because of you, your grandpa fell asleep with the most important people in his life around him.

Meghan if you’re still a member let me know.  I can relate to your story unfortunately.

It’s not so great when the palliative doctor tells you it will make the heart work less hard, that sounded like a good thing to me, but doesn’t tell you it can speed things up.  I want to kill myself for switching to palliative care among other reasons.  I asked if I could switch back to medical team, thinking she’d get better and they said yes.  That didn’t say there wasn’t much time left.  I don’t trust doctors and my life is over partly because so many made mistakes.

My heart goes out to you Virginia as it was a difficult decision for me to make concerning my mother too. 

She could not keep physically going back to the ER for congestive heart failure among other things. I talked to my sisters and we decided pallaiative care was our best opinion. Granted, we live in a small community and the local hospital would not listen to me when I rejected their efforts to run all kinds of tests on her. I knew that she didn’t have much longer to live. That was heart breaking to realize, but also our mother had prearranged her medical care and it was basically out of my hands after her health declined to a certain point. We brought her back to my home and that’s where she passed away about 3 wks later. 

When we changed from palliative care to hospice, it was a real eye opener as to how the body begins to shut down. What I thought I was doing by not giving my mother morphine when she needed it ended up causing her more distress. I researched the stages of dying and my mother was definitely only going to last maybe a week at the most. She had been pulling at her blankets and hanging onto her bed rails. That is distress and I let it get out of control because I couldn’t see that she was in pain or discomfort. I thought she would verbalize it somehow. The hospice nurse told me it’s showing in her face and body language. By this time, she was already “gone” in that she stopped opening her eyes. She had not spoken for several weeks and was filling up with fluid. Mom instructed us that she did not want to prolong her life other than making her comfortable and that’s how it ended. I am thankful that it happened that way as she simply stopped breathing. It wasn’t dramatic like I imagined it would be. 

I can understand how this must have been upsetting then, as much as it is now for you Virginia. Anytime our loved ones are sick or undergoing traumatic events, we will be perplexed as to what is best for their care. We second guess our choices and then rehash everything that happened. I remember I felt so guilty about things that I just couldn’t have foreseen. Being a caregiver is one of the hardest jobs. It is also very scary to put the lives of those we love in someone else’s hands. 

Let’s stay in touch so we can console each other, okay? 

Frances 

Frances,

I must have been in shock in the hospital, and I didn’t talk to the doctors like I normally had because I didn’t like what they were saying.  I had been the one over the last four years at all the appointments asking the questions.  Then I don’t know what happened to me in the hospital.  Since then I blame myself for not making them do something.  I have since spoken to the ICU doctor on the phone.  He says nothing could be done but now I’ll never know.  She had cancer in her lungs and was on oxygen in the hospital.  They said only morphine or a ventilator would help the breathing but I don’t know why they didn’t put the Bipap back on and I didn’t think to ask at the time.  I don’t know where my head was.

There are many other things I did wrong in taking care of her and I blame myself.

I am so very sorry about this Virginia. If you were having issues like me, you were not getting any rest and you had to do so many things like explain everything to each new doctor or nurse that came into the room, make sure they were giving her the proper medicine or not accidently giving her things she couldn’t have. I thought to myself, “ Do they even read her charts?” 

I’m not familiar with a Bipap machine. I do remember when my sister in law was dying from lung cancer and her doctor said that if she decided to smoke, it’s not going to do any more harm then she has already. I was very upset, but nothing would have made a difference by that point. 

I know you long for answers and perhaps it will take time for those guilty feelings to lessen. I have my own guilt to this day. I know I agonize over things still and it’s been 3 yrs since my mom passed. 

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