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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.

Hospice now has got not much to offer. The nurse visits are usually once a week.
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.
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Reply to AlvaDeer
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I fired the first hospice nurse dad had because I didn't like her behavior towards him at all. Her attitude stunk to high heaven, and I called the hospice agency to complain about it, I was an only child too and not about to watch hospice charge Medicare a bloody fortune and do half arsed care. The aide who worked in the AL was kinda wide eyed listening to me on the phone and said he'd like ME in his corner when he gets old and needs an advocate, 🤣

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.
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Reply to lealonnie1
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Please take advantage of the 24 hour availability which hospice should provide. I would ask to speak to the on-call nurse(be kind and call during the day) and explain your concerns and keep asking until you are satisfied. I’ve never heard of the percentage rating and frankly, I don’t think it should have been put to you that way. I’m sure there’s some type of evaluation system they use, but to speak of a dying loved one in terms of percentages is not compassionate or professional to me.

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.
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ElizabethAR37 Jun 20, 2024
Good to know that there are wonderful hospices out there. Your Hospice probably wasn't owned by a hedge fund!
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We were incredibly fortunate to have excellent hospice care. Mom was well cared for in a lovely 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.
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Hospice was useless while my mother was dying. The only thing they did was briefly check my mother's vitals a few times a week and say things like "She's actively dying". They were unable to answer my basic questions or provide guidance of any kind.
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NeedHelpWithMom Jun 21, 2024
What a shame. You deserved so much more than this.

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.
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Jk, I am so sorry you are alone in this, you need support too. Is there anyone that you can call to help you just to be your support system, even a church, an old friend or relative, neighbor.

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. 🙏
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JuliaH Jun 25, 2024
I'm pretty sure that hospice has clergy that comes in and it wouldn't hurt to talk to them. They are very informative of the situation and can not only help the person but family as well.
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I was a Hospice Liaison for 5 years in California. Families have the right to change Hospice Agencies.
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.
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My father was placed in hospice (at home) and it was a horrific experience. The nurses were never available, phone calls not answered, etc. I told my children NEVER to put me in hospice.

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.
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Our experience with hospice wasn't the best either. On the day she died, my sister and I were talking about transferring our mother to the local hospice facility rather than having hospice at the NH because weren't impressed at all with the quality of the caregiver that she had. My mother previously had hospice while she was at home last year and that experience was very positive. They had been excellent, hospice at the NH was absolutely lousy.

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.
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jkl0916 Jun 25, 2024
I am so sorry you had a lousy experience as well and so very sorry for the loss of your Mother.
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I get what you're saying. As long as Dad isn't in any pain, what can you do? He might not be eating due to oral issues or because he doesn't have an appetite being inactive. I brought tubes of Ora-jel, Ambisol to my Mom to help until they could get her "magic mouthwash" to her. She used lots of it but whatever it takes right? This is an emotional time and a feeling of helplessness is overwhelming. You can't stop the inevitable and it's nothing you can control. A visit with the clergy that comes to visit Dad is there for you too. If not, find a clergy that can come and give peace to you and your Father. I'm never going to forget how aware my mom became when she was visited by the priest and he absolved her of her sins,she passed away the next day. That was a good day, no more pain for either of us.
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