My 89-year-old father has numerous health issues, CHF, COPD, neuropathy, early stage dementia. He has not been mobile for 2 years now and resides in a Veterans skilled nursing facility. He has been hospitalized several times this past year for infections (UTI, cellulitis) that quickly turn septic. Since his most recent release from the hospital 3 weeks ago, he has rapidly declined. Has frequent days that he remains in bed completely unresponsive, with days in between he is up in his wheelchair, but still not very alert and will eat/drink very little if any at all. The SN facility recommended Hospice care.
They came in a little over a week ago and did an accessment and determined he was immediately eligible. His nurse saw him the next day and evaluated him as 20% which would result in 5 nursing visits and 2 CNA visits per week. She had 2 visits then went on vacation.
An on call nurse saw him the next day and was very concerned as he was completely unresponsive, heart rate remained in the low 30's. That was the last I heard from anyone from Hospice (5 days ago). Also, no CNA visits to date. I had concerns after my visit last night and called this am. Yesterday he would not eat and his mouth was in terrible condition (mouth care was ordered last week and hasnt started).
I received a call back from a nurse who said she saw him yesterday and changed his rating to 40% so he will only be seen once a week now. She explained it was due to him being in his wheelchair when she was there and that he was eating. The report I received from 2 people at the facility and what I witnessed at dinner was that he took maybe 2-3 bites and they were extremely concerned as he was not having any or very minimal input. She also explained she was a nurse servicing another county filling in and had been extremely busy. Stated she would put in an order for the returning nurse to visit on Monday (4 days from now) and would "try" to call and check in on him tomorrow.
Starting hospice was a very emotional decision, but I tried for focus on finding comfort in it as I am an only child and wearing myself very thin from stress and worry over his care but as of today feel very let down and defeated by the care that was promised by hospice. I am hopeful maybe it will get back on track when his assigned nurse returns, but saddened that it seems this "fill in" nurse is writing him off because she doesnt have the time to cover.
Last year when my husband was dying (after seven years of dementia and other illnesses), he was in the hospital. The palliative care physician assigned to his case suggested that he be placed in an inpatient hospice. My children and I finally agreed. He was placed in a beautiful free-standing hospice, more like a luxury hotel. I was not his caretaker anymore, but just his wife. It was a beautiful experience. He received outstanding care and died peacefully. I have changed my mind about the hospice situation.
We didn't realize our mother was actively dying that day. Hospice did not inform us that her death was imminent. Had they done that, we might have done things differently that day.
On the day she died I told my sister I'd go back to the NH in the afternoon after the aide was gone. I planned to sit with her for the evening. It was good I showed up when I did because the floor nurse was putting an oxygen mask on her and told me her vitals were dropping. I was able to make the calls to my sisters to get there. Our mother was gone an hour later.
By the time we received the call from the hospice nurse that our mother was dying, she was already gone.
You are not stuck with the agency that you initially went with.
A lot of families were not aware that this can be done.
The Hospice agency will not bring it up. But, it will be in the folder that was given to you at the time you signed on.
I am so sorry that your hospice provider lacked guidance and support.
I wish everyone could receive the incredible support that our entire family received during my
mom’s stay in her end of life hospice care home.
There was a large living room area, a beautiful kitchen and dining area, a large back patio area. A guest room if family members wanted to sleep over. A library to sit and read.
Mom had a beautiful room with an attached patio. The staff was so kind to my mom and our family.
We chose a non profit hospice provider. They hold annual fundraising events in the community.
I will always be grateful for their service.
I’m sorry you’re having this experience with hospice and it shouldn’t be up to you to turn it around but I would do whatever it takes, even if it means switching agencies. Our experience with hospice was wonderful but I know that’s not always the case. I hope things get better you and your father.
Don't be scared to ask for help, we all need it at times.
As for the hospice question, I have no good answers for you. I'm more concerned with you. So please take care of yourself.
Let us know if you have any other questions, sorry I couldn't give you better answer. 🙏
Anyway, nurse Ratchet got replaced with a very lovely and professional woman who was quite capable, which was all I wanted in the first place. Nothing more than expected and promised. The CNAs for bed baths were terrific as was the chaplain who wound up marrying my son and his fiance at dad's bedside so he could witness it.
The experience I had with mom and hospice was 100% professional w/o any complaints or need to switch nurses, as it should be.
Speak your mind to hospice admin w/o yelling and get your wishes seen to. That's my suggestion. Be firm with what you expect moving forward, too.
Best of luck and God bless you at this difficult time.
Aid two to three times for shower or bath
Call from Clergy and call from social worker.
If you are thinking there is any care involved there is not. That is hired separately. Equipment is provided, hospital bed and etc. and medications.
As I wrote another OP, Hospice was once a mission of care. It is now a Hedgefund honey and is getting huge amounts of tax money from Medicare to do not much.
Sad, but then you aren't paying anything. Directly anyway. Just your tax dollar at work.