Hospice Care from the other side

[Hospice Nurse LPN, BSN, RN]

I haven't been on the boards for a while and have missed "talking" with everyone. My husband had been diagnosed w/ prostate cancer about 4.5 years ago. He had yearly visits w/ his doc and PSA was always checked, but he went from a PSA of 1 to 105 in a year. They told us he had Stage IV w/ the beginning of bone mets. He had radiation 3 different times and numerous rounds of chemo over the years. Just before Christmas, he was diagnosed w/ mylodysplastic syndrome. He could no longer tolerate any chemo. You know, sometimes being a nurse really sucks. I looked at all his labs and made most of the appointments w/ him. I knew the weekly transfusions were the only thing keeping him here.

On February 15, he told me he was tired and wanted to stop everything. He had an appointment w/ his oncologist that morning, which he kept. His platelets were down to 10. We left the appointment w/ orders for one final unit of platelets and a referral to hospice.

I signed all the pre-admit paper work the next day and he was admitted that afternoon. We decided to use the hospice that I work for part time because I wanted people I knew and trusted taking care of him. They were all so wonderful -- from the CNA to the doctor. The hospice nurse made daily visits because his was a rapid progression. The doctor had told me a couple of days or at the most one week. He lived 11 days. I've been a hospice nurse for over 12 years and I've always tried to give each one of my patients the care that I would want for a family member, but I feel I learned so much from my experience from the other side. I will now spend that extra few minutes listening to the PCG ramble on about the same old things. So what if I'm a little behind in my day? I believe I can now have more empathy for the stressed out PCG. So many people wanted to come by and see him and I was busy playing hostess---serving coffee and washing up all the dirty dishes. It's o.k. to deligate chores.

I saw first hand just how ugly family members can be to the PCG. My husband had gone into a pain crisis and the decision was made to begin him on a morphine drip. I refused inpatient because he wanted to die at home. My sister-in-law actually told the MSW I was starving him and he really didn't need the morphine infusion because he wasn't hurting. Another of his family members came to see him just a few hours before he died and told me that his color was good (his skin tone was gray and he had begun to mottle the day before) and if I would quit giving him so much morphine he could eat and get better. One of his friends quietly showed them to the door.

My sweetheart left this world on February 26 @ 8:00 in the evening. It was a "good" death. One of his friends was sitting in chair by his bed reading him scripture and I was sitting in his bed holding his hand. He whispered, "I love" and took his last breath.

I know I'm rambling now, but I want each one of you hospice nurses to pat yourself on the back. Having hospice at home was the best decision I've ever made. Thanks for listening.

Sharon

[leslie :-D]

(((sharon))), i am so, so sorry for your loss.

we agree, that death can bring out the very best and very worst in us.

it sounds like a lovely death...what more could anyone hope for?

thank you for sharing such an intimate part of yourself, with us.

and please take the time to grieve, pamper yourself, reflect, and rest.

heartfelt prayers for peace and healing.:redpinkhe

leslie

[nursel56]

So sorry to hear about the loss of your husband, Sharon. I don't work in hospice, but home health where people have passed away without being formally admitted to hospice, my mom received hospice services as an inpatient last summer, and my stepdad had home hospice services in 2008.

I learned so much from those experiences. What to do. What not to do. There were some things I had never thought about before, that I as a family member found to be unpleasant, though I'm 100% sure the providers of care had no idea it would be bothersome.

A couple of weeks ago a friend sent me an "urgent" e-mail upset because her boyfriend's family would not allow him to give their mother (in home hospice) the morphine that was ordered for her, and they all thought her respiratory distress symptoms were actually caused by the Ativan (don't get me started!). Her respirations were only 4 per min by then, so probably if she raised hell with his family the outcome wouldn't have been much different and she passed several hours later.

All we can do is educate and educate some more about this - again condolences on the loss of your sweetheart. I'm sure the knowledge that it was a "good" death will give you immeasurable peace as time goes on, sharon{{HospiceNurseLPN}}:redpinkhe

[MissIt]

Sharon, I hope you realize what a blessing you were for your husband in his last days. I hope I am both able to help my loved ones like that and that, when the time comes, someone loves me enough to care for me so well.

[missy--kay]

Thank you for that story, Sharon. I am sitting here in tears. I am a Hospice nurse, and although I truly love the work, I am tired. I think it's called Compassion Fatigue Syndrome. I give all I have to the families of my patients and I am tired. You have inspired me... and reminded me that my work is life changing. I am so sorry for the loss of your husband...

[Hospice Nurse LPN, BSN, RN]

Thank you for your kind replies. I went back to work this week...2 days in the office and Friday was the biggie. I saw pts on Friday. A couple of "my pts" had passed away while I was off and there were a couple of new ones. I'm only going to the LTC facility for the time being (all dementia pts). It's good to be back in the swing of things...having a schedule.

sharon