As much as I was told about "the death rattle" I assumed it was like the dysphagia symptoms he had had for years...so I wasn't prepared for it. What I wasn't told about was the "guppy gasping for air" that went along with the rattle. He had an oxygen tube on his nose but it kept slipping out because of all the mucous, nothing would stop it. I wont go into any details but it lasted about 3 hours and was very upsetting. I was alone with him, the hospice nurse had left, as did the family members I sent away since it was so late at night. I discussed this with the nurse on the phone but decided not to give him the morphine. He has had horrible hallucinations with Dilaudid (sp) in the past and subsequently has been on strong medication for the advanced Parkinson's related hallucinations for the past 10 years. I had given him that med which usually makes him go to sleep, I didn't want to risk him having bad hallucinations at the point of death. He died that night, 4 months ago today. Ive talked to several chaplains and nurses about it.. but I'm still reliving it and questioning the decisions I made that night. So thank you for this post , sincerely K.
I suspect there's nothing I could say that would prevent you from "questioning the decisions I made," but it sounds like you did everything with a desire to do the very best for him. I hope you have a few people, whether friends/family or a grief counselor/group, that you can share with. I so appreciate you letting me know about your experiences and thoughts.
Thank you , Yes we had a great nurse and chaplain from our first hospice who I have remained friends with, and our "current" hospice chaplain has been helpful. He said that my husband was most likely not conscious and it was not as upsetting to him as it was to me. He said like Sleep Apnea in that the person making the noises is not aware of them but it is upsetting to the person who is with him/her. I hope that is true. Im sure it will always be with me, but it is mellowing some, and not as raw. I was so busy the first couple of months with paperwork, etc. I am just now trying to process it. There are a couple of group grief programs I may attend. He had Parkinsons for 29 years, which turned into dementia/lewy body dementia 12 years ago when I quit my job to care for him 24/7 solo for the most part. Sometimes I feel like I have something like PTSD from the last few grueling years of caregiving. But all is well, I am surrounded by my family which is great. Tincture of time, measure of mercy. thanks again. I enjoy reading your posts and will look for the book.
As much as I was told about "the death rattle" I assumed it was like the dysphagia symptoms he had had for years...so I wasn't prepared for it. What I wasn't told about was the "guppy gasping for air" that went along with the rattle. He had an oxygen tube on his nose but it kept slipping out because of all the mucous, nothing would stop it. I wont go into any details but it lasted about 3 hours and was very upsetting. I was alone with him, the hospice nurse had left, as did the family members I sent away since it was so late at night. I discussed this with the nurse on the phone but decided not to give him the morphine. He has had horrible hallucinations with Dilaudid (sp) in the past and subsequently has been on strong medication for the advanced Parkinson's related hallucinations for the past 10 years. I had given him that med which usually makes him go to sleep, I didn't want to risk him having bad hallucinations at the point of death. He died that night, 4 months ago today. Ive talked to several chaplains and nurses about it.. but I'm still reliving it and questioning the decisions I made that night. So thank you for this post , sincerely K.
I suspect there's nothing I could say that would prevent you from "questioning the decisions I made," but it sounds like you did everything with a desire to do the very best for him. I hope you have a few people, whether friends/family or a grief counselor/group, that you can share with. I so appreciate you letting me know about your experiences and thoughts.
Thank you , Yes we had a great nurse and chaplain from our first hospice who I have remained friends with, and our "current" hospice chaplain has been helpful. He said that my husband was most likely not conscious and it was not as upsetting to him as it was to me. He said like Sleep Apnea in that the person making the noises is not aware of them but it is upsetting to the person who is with him/her. I hope that is true. Im sure it will always be with me, but it is mellowing some, and not as raw. I was so busy the first couple of months with paperwork, etc. I am just now trying to process it. There are a couple of group grief programs I may attend. He had Parkinsons for 29 years, which turned into dementia/lewy body dementia 12 years ago when I quit my job to care for him 24/7 solo for the most part. Sometimes I feel like I have something like PTSD from the last few grueling years of caregiving. But all is well, I am surrounded by my family which is great. Tincture of time, measure of mercy. thanks again. I enjoy reading your posts and will look for the book.
HI I bought the kindle version and will buy the paperback for my young hospice chaplain friend.
Sounds like good support. But what a difficult time caregiving you had . . . for years.