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 unbearably 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.
By the way, the booklet I was given had a great deal more information than the PDF version I noted above. The one I was given is by Barbara Karnes, RN, and is ISBN 0-9621603-1-8. It gives a Summary of Guidelines outlining the signs and symptoms of death from one to three months out, one to two weeks out, days or hours, and minutes. I would be happy to type those here if it would be helpful.
Joni, thank you for sharing the last intimate moments of your husband's life. I am ambivalent about my husband's death...I don't want this to go on for several more years for either of us but I'm not ready to lose him. I hope I have the strength and poise as you, Elizabeth and all the others have had when it was time. Somehow I think I'll be a basket case.
I have not witnessed a death in all these years, so the booklet you recommend will be helpful for me to "prepare", if that's how to describe it.
I want to thank for sharing those moments with our members. I confess that I have not read your post. When Sid had his crisis last summer, and I thought the end was in sight, I obsessed over how I would handle it to the point that it consumed me. At the urging of my counselor, I put it away in the back of my mind until the time would come. It remains there so I can somewhat function day to day.
I had never witnessed death until my father, so I know what to expect. In my father's case, he was 94, had no quality of life left, and it was his time. Being with him and holding his hand at the end was like a gift from God to me, and I am not religious. It gave me peace, calm, and closure like I had never known. I hope I feel that when it's Sid's time, but for now, I cannot think about it or read about it. I do hope that your post is of help to those of our members who want and need to know and wish to prepare for the death of their spouse.
Joni, your post brought tears to my eyes & a lump to my throat. I don't think we're anywhere near that time (barring some other problems), but I have been with both my mother & my brother when they died. I think my mom was waiting for me to come to the hospital to give her permission to go. Sometimes I think we handle things better than we think we will - at least at the moment. Afterward, I'm not so sure! Thank you for sharing your story.
Joni, When you wrote "the life and death of our loved ones is the central fact of our existence as caregiving spouses" you said it all. It is a reality that is hard to face and to accept no matter what age we are and it is truly surreal. I hope you have comfort that you were able to tell him so many of your thoughts and express your emotions and to be there when he passed.