When my Dad was in Hospice, my sister, mom and I pretty much camped out in his room. Sometimes just 2 of us, but never just one. Until August 20, 1999. My sister went to be with her kids and my mother went to her house to get some rest. That left just me with Dad.

Dad was my rock. He was the parent who always encouraged and supported me. He was the one who loved me unconditionally. When something bad or unfortunate happened, he was the one who comforted, rather than blamed.

So, I was sitting with him, touching his hand and watching him breathe. I knew the end was very close so I opened the window and suggested he go out and take a look at what a beautiful day it was. There was a pond with lots of beautiful birds, and he loved birds. A few minutes later, he died. I believe, to the core of my soul that he waited until it was just the two of us, to leave.

A few days later I was out walking and a beautiful plume feather floated down right in front of me. I looked up and didn't see any birds, but absolutely felt the presence of my beloved Dad.

Before they would help us. If she were taken off dialysis, she would have been dead in 3 days. She had NO kidney function.

As it was, she made it to her next birthday without their help. I can not recommend them because of their silly little bureaucratic rules.

But my mother and father seemed to find their involvement of some value.

Yes, hospice has rules and regulations.

I saw this just now online:
"Many kidney-failure patients must halt dialysis to receive hospice care"

As they approach the end of their lives, many patients with end-stage renal disease face a harrowing choice: Continue dialysis treatment or enter hospice care. Medicare currently will not pay simultaneously for dialysis and hospice care for patients with a terminal diagnosis of renal failure. Patients who want hospice care usually must first halt the dialysis treatments that keep them alive.

Medicare's requirement to halt dialysis before hospice leads some patients to forgo hospice entirely.

Full article at:

https://newsroom.uw.edu/news/many-kidney-failure-patients-must-halt-dialysis-receive-hospice-care

We chose to give her another year of life while staying on dialysis without hospice. Instead of 3 days of life off of dialysis with hospice. Who would NOT make that choice? 3 days of life or 1 year?

I have very good health insurance and we could have covered hospice costs without going through Medicare. But hospice would NOT allow it.

It was a hospice beuacratic rule not just a Medicare rule tied up with the price of life.

I hate the medical community. They are so tied up with prices and profit and what their bottom line is. They lose focus of the humans involved and end up frequently causing more pain and suffering.

for hospice they told me it would be a little over a week before they would be able to have to medical bed delivered. (she never made it home--she died a day later or that day.) it's been nearly ten years and my memory isn't that good on things pertaining to what we went through at that time.

my point is--it was going to take well over three days to be able to bring my mom home. i agree that hospice rule you're talking about is totally fucked up

I was camped out at a nearby hotel room. Was grateful to have the resources to do so at that time.

The people at the hospital found me odd. I would show up early in the morning to talk to the doctors/hospice, leave mid-afternoon, come back for dinner, go back to my hotel...then show back up at 2:00am to sleep with her for a few hours. I told the hospice workers at the hospital that if she wanted to let go when I was not there, I was making damn sure that she could; that she alone would make her decisions, even comatose. I told them that my sis had her own mind, and I would trust it.

I wondered myself how it would all end up. She was quite angry with me towards the end because I couldn't make corporate medicine try to save her.

The night before she died, my husband and I read Winnie the Pooh to her (her favorite childhood story). I played her her favorite music. My husband and I left at 3am to go back to the hotel, knowing the end was near, wanting to give her some space. Came back at 7:15am. She was still alive.

We (hospice nurses/doctors, my husband and I) were talking about children who made it through when their only parent died, and how some did quite well, despite their immense pain. Shortly after that conversation, I looked over and saw that my sister had stopped breathing.

She was pronounced dead 10 minutes later. But she really left when we discussed how her boy might just live decently, and with hope, even beyond her.

Bottom line: she waited until she felt her son had a chance. That is all she ever cared about. It was incidental that she allowed me to be there, but that was her way. And I am grateful nonetheless.

I miss my Silver Girl like fire. Four years this December (Winter Solstice). I will never forget.