I am so sorry for your loss. {{HUGS}}
We lost my Dad Feb 17 after just 26 days of in-home hospice. He had kidney failure and leukemia. He would have been 87 years old this July had he lived. He fell 5 days before Christmas, his legs just "gave out" which we had been told would eventually happen, his body was going through so much. He was in the hospital 10 days, then 23 in a nursing home. That is where his doctors determined he had less than 6 months to live and offered hospice, there or at home. Being that he had a fear of dying in a nursing home he had been promised years ago that he could die at home so we brought him home.
He came home and it was as it had been prior to his fall in December, but he barely had the strength to stand, let alone walk, yet he forced himself to. His medications were stopped, for high blood pressure, diabetes, the leukemia, etc., as hospice is about making a person as comfortable as they can be as they are dying, not to make them better. For a person to be approved for hospice there must be a prognosis of less than 6 months, we had hoped we had closer to that than the less than 4 weeks we had, as I'm sure you did as well. Going to the hospital isn't something usually done with a person in hospice, unless the patient or the family (if in charge of the decision making at that point) wants to stop hospice and concentrate on making the patient better. Hospice and going to the hospital have different objectives.
We didn't have nurses caring for Dad, we, my family, did it. Nurses did come every 2nd or 3rd day to check on him, and bath aides came twice a week, and we could call if we had questions, but we handled his care. When he couldn't stand up from the toilet on day 10 of being home, and had to be coaxed to take two steps to his wheelchair his nurse looked him squarely in the eyes and told him that she was sorry, but for his own safety he could no longer get out of bed. He was trying to force his body to do something it could no longer physically do. He spent the rest of the day, about 12 hours, in his wheelchair, before he went to bed at 12:30 am, I'm sure because he knew once he got into bed, he would never get out of it of his own volition again.
The next day he told my sister he was "done." She knew what he meant and had "her talk" with him. She told him she loved him and that if he was ready to be done it was fine. He said he was and we could see he had resigned himself to the inevitable, something he had refused to do for 10 years of being ill. That day was the first time he ever admitted he needed something for the horrible pain he was in, and we started him on the morphine, and a few days later on anti-anxiety meds. He had dementia and thought we were keeping him prisoner by not allowing him to get out of bed, when he really was no longer capable of it physically. We changed him, bathed him, and fed him in bed from that day forward.
He had a "good" day (for him) that Super Bowl Sunday, ate ribs and sandwiches from Subway, he loved to eat so was happy, but paid for it the next couple of days. His body couldn't handle the heavy food anymore and he was horribly sick. That began his decline into withdrawal, a normal behavior of a dying person. That Friday, a week before he passed, his visiting nurse took me aside after spending a long time examining him and said she felt he would be going soon, a day, two, or more, she wasn't sure but the signs were there. He had taken to sleeping most of the time but that night he had a burst of energy and alertness and visited with grandchildren, great grandchildren and family friends, it was a blessed time for everyone, our last "good" time with him. We had him with us one week more from that night.
He knew he was loved, that we would be fine and take care of our Mom, we told him so. From that Friday on he slept most of the time, stopped eating the next Tuesday, he had lost his ability to swallow, I was told on Wednesday that he was in a coma. But he was still quite agitated, (I found out that there are different types of coma) and I had to call for a nurse twice that last week to come and assess him and make changes in his meds to keep him comfortable. Friday morning we knew he would more than likely not make it through the day, he passed that night.
Through all of this hospice was always supportive. I asked an innumerable amount of questions, especially that last week, and they never got tired of me or my family. They explained the natural progression of dying to us from the beginning so we would know what to expect. I have included a link for you to read, my Dad did everything on it as he went through the dying process, but not everyone always does them all, each person is unique in how they go through the process of dying. Perhaps your grandfather went through some of these as well. They gave us a brochure (among much more information to assist us) explaining the transition the person is making, coming to their own terms with dying and doing it, but it was all still a shock to witness it happening to our loved one. We had visits from his social worker and a chaplain that last week, along with almost daily visits by nurses. Hospice told us that they are there for us for a year after Dad's passing, for grief counseling or whatever we need, even my 3 year old grandson who I am raising if he needs therapy. We received a card signed by all who came into contact with Dad in some way through the hospice after his passing. And we just received letters telling us of a 9-week grief support group starting next month, and a candlelight ceremony set for May 9th, to honor our loved ones, patients of this particular hospice.
Hospice in our case was a good experience, Dad got to live out his wish to die at home, surrounded by family and friends. Hospice was supportive of our family and our decisions, and explained why things were done a particular way when we asked. They were there whenever we needed them, albeit when you are waiting for them to come assess someone in uncontrolled pain or anxiety the waiting is excruciating and 30 minutes seems like an eternity. They answered every question we had, referred us to what we needed, and were caring and compassionate to Dad and our family, they still are.
Hospice is a HARD job, all their patients will die. I have nothing but respect for them. Don't get me wrong, there were a couple of things i had to complain loudly about to get action, i was my Dad's advocate. But they understood my frustration and determination to do what was best for my Dad and helped me get it done.
I know you are grieving the loss of your grandfather, it is hard. I also know that it is hard to accept that he went so fast once he began hospice, as my Dad did. But, I learned that we are not in control of how and when a person dies, the individual is. He or she chooses to fight (as my Dad did for so long against all odds) and when or if to give up and allow themselves to go. I am guessing your grandfather was ready to go, though you were not ready to lose him, the same way I feel about my Dad. There is a way it naturally progresses, and when the mind and the body agree it is time, it is, it is hard for them to leave if their mind and body are not in agreement. I thought this was a little too "mystical" when I first read it, but I found it to be true a few days before Dad passed. A friend who is a nurse came to see him, he grabbed her and asked if she was here to "help guide him through the woods." When she told me this I realized he was trying to "leave". But she told me he could not go in his highly agitated state, so I quickly called to have him assessed and his anti-anxiety meds adjusted. My Dad was like your grandfather, eating and moving a little before hospice began, then seemed to suddenly got excessively weak and tired once it began. I think he just felt he could now stop pretending and give in and let go. The transition from living to dying seemed to go so quickly those 26 days, but I don't feel it was because of hospice, I believe hospice was a great comfort to him and helped him to be able to go. As physically, mentally and emotionally tiring as Dad's care was for us, especially that last week when we rarely got to sleep, had it not been for hospice I don't know how we could have done it, I can't thank them enough. Their compassion and comfort for Dad and our family helped make our loss into something we can feel positive about, as hard as it has been to go through.
I apologize for the length of this, I didn't realize my story was so long.
http://dying.about.com/od/thedyingprocess/a/process.htm
