Hospice- New topic

I hope I am not offending or discouraging anyone about hospice. Before my dad, everything that I had ever heard from anyone about hospice was nothing but wonderful. My experience - and my mother and husband agreed - was nothing that I was told could or would happen. I wasn't in denial - I knew he was dying and I knew he was suffering. The doctor, who is our family's close personal friend, told us once he was removed from the IV and feeding tubes that he would probably live only a couple of days. I had accepted that and wanted to spend every waking, coherent moment that I had left with him. My problem was when I told the hospice nurse what a bad night he had the night before, she said that he was extremely agitated and prescribed another medicine along with the morphine. However, she never saw him that night - I was with him the entire night - and I would not have described him as being agitated. Anyway, once that medicine was given, he went to sleep and slept the next two days until he died that night. He was mentally and emotionally well before the medicine. He was a businessman and former mayor of our city and told me before we left the hospital that when we got home that he needed to go over some business that needed to be taken care of. I just wish that the nurse would have told us what this medicine would do and I would have waited to give it to him. When I look back, sometimes I wonder if what happened those few days was just meant to be. Maybe it was easier for him to go that way than to be aware of when the end was near. I'll never know, but I do know that even in an unconscious state, he fought me extemely hard when I was trying to put that medicine in his mouth. I guess I will always wonder and feel guilty that he was trying to stop me from giving it to him.

I am not saying that I would never use hospice again, but I will definitely ask more questions and be more informed about what might be happening.

Debi

Good idea, putting them on one thread. My experience with my dad was the first for me. And yes contending with his present wife of 17 years was complicated, our hands were tied. Thats something to think about for those who have parents in a second marriage. Discuss these things before they come about, it will make it much easier on the children, there were 6 of us.
The private facility we were at only had 10 rooms. 4 private 6 for 2 people. We had one of the 4 private, thank God. Everyone was pleasant, smiled, checked on dad as needed. I had no problem with the staff as far as there care. They turned him on time, gave him shots of morphine on time, bathed him on time. And they all did it with a smile.
My feeling was that after he went into the glassy eyed vegtable state that now we were waiting for the body functions to determinate that I somehow did the wrong thing by letting this happen. Virtually he starved and drown in his own fluids, to put it bluntly.
Since that time I experienced a comfort care facility that my long time neighbor was in for 3 weeks. His daughter was an only child, his wife died 2 years before , and we were the eagle eye watching him for daughter who lived in Cincinnati. Over a period of two years things took a bad turn for him. To get to the point I was with him and his daughter when he passed. She requested I stay because we are close and I had already experienced this with my dad. He died in what they called comfort care, he spent one week eating very little, his choice, no appetite. I visited him every evening, this was more appealing to me for some reason. the atmosphere.It was not a feeling of death around.The 6th day he changed, he decided it was time to go home, and not across the street, his final home. Judy arrived at noon and asked me to stay, I weaned her through what I was seeing as it was fresh in my memory, without scaring her I was able to convince her he was giving up, all the signs were there, thru the afternoon I prepared her step by step, you never forget the process. He had one shot of morphine at 8:00 am that day, and died at 5:30 pm. This comfort care has a different scenario, its a hospital type setting with rehab, and some assisted living. I am grateful I was able to help Judy by being there with her when he passed. If what I experienced at hospice in Tucson with my dad helped make things easier for Judy then I helped someone else because of my experience. Things happen for a reason maybe.
Two different scenario's, as different as every individuals is with bladder cancer. This is alot to think about. But its worth the effort to check things out for anyone in the need for such help. Not every situation or facility operates the same. Theres alot of red tape involved as well knowing when they have to go and where. How long they can stay or leave.
I think emotionally one is never ready to see this, and only when its over do you know if it was something you can handle. But somehow you do. I refrain from reading others experiences such as Charlies now because it brings it to close to what I experienced and don't want to relive it. There are somethings that should remain personal, not shared so much. I would call Hospice convenient, but not wonderful. The final result is death, I found nothing wonderful about that.. Ginger

My experience with Hospice was with my father 2 yrs. ago Sept. He had been having breathing problems due to COPD. One evening he was rushed to the ER unable to breathe. He was put on a force air machine...and stabilized. We were told that his condition was such that once the breathing machine was removed, he would have the same trouble and it was not going to get better. They basically explained that he would feel like someone had a pillow over his face, and would be struggling for every breath. We (my brothers and sisters 8 total) discussed what to do. And through alot of tears and heart ache, came to the conclusion that we did not want him in any pain at all. We all agreed which made the decision so much easier. (Fortunately, we didn't have a wife/or stepmother to contend with as Ginger did that always makes things more difficult.)My father was awake and knew what was happening...He was in great spirits as well, and we all had our heart to heart talks with him and said our goodbyes through tears and laughter. Once he was started on the morphine he did drift in and out of a very deep coma-like state...but he was not struggling to breathe, and wasn't in pain...we were concerned with the fact that he was "fine" so to speak the day before and in this state the next day...it was explained that those that are dying sometimes have very lucid moments when something needs to be said...once they reconcile themselves to what is going to happen they let go, and then we just wait for the body to catch up with the brain...We actually had them reduce the morphine to have him "come out of it a bit"...one of the worst ideas ever I might add. He awoke gasping for breath, clutching his chest, and crying...That was the end of that. He held on for 10 days had a meatball sub one day, applesauce a few days, and just water, and ice chips the rest of the time...he didn't struggle, had his oxygen tube for his nose, or sometimes a mask...It was set as high as it would go, just for him, because he sometime said he couldn't breathe...He died peacefully one morning before anyone could get there...He wouldn't have wanted us to watch anyway so he got his wish...Overall our experience with Hospice was positive. I have been thinking a lot about it again as my husbands cancer is Metastatic, and the end is relatively inevitable...I wouldn't hesitate to call Hospice in again when and if they are needed. They made sure that my father was as comfortable as possible...and I would want the same for my husband...When the end is near...They in my experience have been the angels you need to get through...I think just watching someone die is traumatic enough...but to watch them cry out in pain....I could never do that...Without Hospice I think that is what you get...besides the stress it puts on the patient...the family is put through hell trying to take care of everything themselves....Hospice I found is a peaceful, calm transition into death...especially after the hell this disease puts everyone through...that is needed at the end...PEACE. I also think it is very normal to question what could have been done differently...for me I watch all the commercials now for COPD, and the new drugs available in the last 2 yrs...could they have helped? Should we have tried something else...I think that with any death there are regrets from those left living, whether it be a car accident, illness, or some other tragedy...there are always "What Ifs"...

Karen

There are several comments about Hospice services at the end of some threads, so might be nice to share them all in one. Our experiences were positive. We did it at home. Nurse came three times a week. Dad received care for about 8 weeks before he passed. They were very open to discussions about medication dosages and were very conservative with instructing us on pain medication. He did not have a lot of pain, so he did not get a large amount of pain medication. Only after he was unable to swallow pills did they put him on a pain patch and it stayed on the lowest dosage. We introduced some morphine at the end, but it was after he was already in a coma-like state, mainly to help with labored breathing. It is unfortunate that some have had worse experiences than ours. I know of others that have had worse experiences with the hospice facilities or wings of hospitals rather than the in-home care.

My advice- like any other stage, ask lots of questions and understand that it is the patients and caregivers call on treatment/medication- don't be pushed into doing something you do not want to do. But I think it is difficult sometimes to tell when to provide more medication so that the patient is "comfortable." My dad lost his mental capabilities due to the cancer, buildup of waste toxicity and other general end of life issues, not because he was overmedicated. At least that is what I observed.

Our nurse was great and does a job that I could not do day after day. I encourage others to share their experiences and advice- good and bad.