I hope this is not too personal to share here. It is information that I feel would have been helpful for me to have. If you are not in these stages yet, there is no reason to upset yourself by thinking about it. That's how I always felt, anyway.|
On the day of my dear husband's death, the Hospice nurse handed me a booklet called, "Gone From My Sight". It had the most helpful information about dying that I had read, and was a great help to me on that last day. However, I wished they had given it to me earlier. There is a PDF version here: http://www.hph-hospice.org/files/UnderstandingHowWeDie.pdf
From my own experience, on the Wednesday before his death, my husband would barely eat. I was able to give him some chocolate ice cream, the last thing he ever ate. He had long since stopped being able to communicate, walk, or express emotion, but he seemed incredibly peaceful that day. I realized then that he was starting to detach from me. While it felt wonderful because I knew he was moving beyond suffering, it was almost unbearable sad for me because I knew it meant he would soon be leaving me.
The next day, Thursday, he was in bed all day. I sat by his side. He made some occasional movements, but was totally asleep. On Friday they got him out of bed and put him in his wheelchair. As soon as I saw him, I knew he was in the process of leaving. He didn't move, didn't open his eyes, but seemed so much more peaceful than he ever had. I sat and held his hand and sang to him, trying not to cry in his presence, as I at all times believed he could hear me.
I had fought and fought giving him permission to leave, but this day I did, as it seemed he somehow needed it. It's more likely that I needed it, nevertheless, it felt good to give him permission. More than that, I urged him to take God's hand and go on this journey with Him.
On Saturday he was in bed again. I couldn't stay long that day, as it was tearing me apart emotionally, and the nurse assured me it didn't look like he would die that day.
On Sunday, he was in bed, very gaunt, very pale, and it was (believe it or not) the first time I actually, totally realized he was dying. There was no more denial about it. I sat by his side and held his hand, talking gently to him and crying my eyes out. I leaned a lot on the caregiving and nursing staff that day, asking them what they thought the timeline was, how I could possible handle his impending death, and asking what specifically would happen when he died. I was NOT ready to let him go, although clearly I had no choice. I called my sisters in New Jersey and told them I needed them to come out here to California as soon as possible. My sister Ann said she would fly in late that night.
On Monday, it was my dear husband's 80th birthday. I am so grateful that my sister Ann reminded me before we left the house, as it would have caused me to melt down completely if my first reminder had been the balloons and streamers the caregivers put on my husband's door. He seemed comatose, although his eyes were halfway open and stayed that way the rest of the time. I stayed with my husband for a while, then suddenly felt a panic as I realized that sometimes people wait until their loved ones have left the room before they will pass. So we went home and I took a nap.
We returned to the care center at 5:20 pm. That's when Hospice gave me the booklet I mentioned above. My husband's breathing was very slow, but there was only a very slight "death rattle". I told him everything I ever wanted to tell him in 25 years of life together. How much he meant to me, how sorry I was for everything I ever did to hurt him. I gave him permission again to move onto this leg of his journey that he would need to take without me. We had the Weather Channel on in the background, as that was the channel he always kept on in the background at home. At one point, my sister and I were chatting about a show on the channel, interspersed with my feeling under his nose to be sure he was breathing. I suddenly sensed he had stopped, and checked again. My sister asked "is he still breathing?" and I said "I can't tell" even though I could tell he had stopped. I was too afraid to say it. My sister felt under his nose and said "Yes, he stopped". His color immediately turned yellow and I knew it was over. It was 6:05 pm. My sister got the nurse, who of course verified that he was gone.
I believe he waited until he knew I had family with me before he finally went. His last act of selflessness for me. I hope this isn't too detailed and inappropriate to share. The life and death of our loved ones is the central fact of our existence as caregiving spouses, so my hope is that this will be useful to some of you. If anyone is interested in what happened from that point forward, I will share it here.
Thank you for listening,