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Permalink Reply by Dennis C. on October 20, 2017 at 5:54am

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.

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Permalink Reply by Virginia G on July 28, 2018 at 12:42am

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

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Permalink Reply by Virginia G on July 31, 2018 at 12:34am

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.

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Permalink Reply by Frances Koonce on August 5, 2018 at 11:23pm

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 

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Permalink Reply by Virginia G on August 5, 2018 at 11:52pm

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.

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Permalink Reply by Frances Koonce on August 6, 2018 at 12:10am

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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