Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
Find Care & Housing
Hi Shelly69, My husband of 46+ years has Glioblastoma brain cancer, and we placed him on hospice about 2 months ago. The average lifespan with this aggressive cancer is 12-18 months. We are at 15 months. Shelly69, Everyone is scared of the word “hospice” but I decided to call it “comfort care”. The hospice staff we have are incredible and help you every step along the way. Most importantly they want you to let them do their job so you can take care of yourself.

Myth: Hospice means giving up hope. (Notice it’s only one
myth)
Facts: Hospice redefines hope and helps patients and their families reclaim the spirit of life, and
Hospice care focuses on improving the patient’s quality of life allowing them to make the most of the time they have.

And a good friend of mine in the senior care business helped put it into perspective: 20% of hospice patients are at life’s end, but 80% are actively living.

While I was also scared to take this step, I’m so glad we did because it gives us additional help that we wouldn’t otherwise have. And, people go on and off of hospice all the time. Blessings to you and your loved one. You are not alone. 💕
Helpful Answer (5)
Report

NO
Helpful Answer (1)
Report

Hospice, imo, can be cruel if someone like your mother is not actively dying. Try pallative care, nutrition supplements, help from staff in encouraging fluids. An older person's appetite decreases but they must stay hydrated. I have experienced both Hospice and Pallative Care.
Helpful Answer (2)
Report
ShirleyDot Dec 2024
Why is it cruel? Hospice provides palliative care in addition to other services for the patient and family?
(1)
Report
See 1 more reply
Carol, please provide details of your experience with hospice care being ‘cruel’. That’s not at all helpful without some justification.
Helpful Answer (2)
Report
carolwilburn Dec 2024
Most people don't know about Palliative Care. It is comfort care for the patient and family. My mother was dying of Alzheimer's and desperately wanted a drink of water, Hospice refused. A dying person will naturally quit eating and drinking when the end is near. Hospice does nothing, including water, to extend life. My husband had aggressive cancer and battled long and hard and there was no hope. Palliative Care made sure neither he or I wanted for anything we needed to be comfortable. This needs to be talked about more. Even if a sip of water extends life a few hours or days, at least the patient was listened to and comforted. Hospice is every one's go to with any other research done. The staff at my husband's cancer center offered both and gave me good reasons to choose Palliative Care. I am glad we did.
(1)
Report
See 1 more reply
You need to hold off on 'scares me to death' until you know what they offer - consider the pros and cons.

Some people DO NOT realize that a person doesn't have to be terminal to qualify for hospice care.

1. Ask nursing home manager / administrator why referring. (You didn't mention to us which is important to know.)
2. You need to talk to Hospice administrator 'more' than / vs asking us - as you see here, you already have 34 replies ... while this may 'help' you - it would overwhelm me as everyone has their own experience... plus) YOU must talk to administrator/social worker directly to ascertain what Hospice offers.

Every Hospice office is somewhat different in how they are managed.
Get everything in writing.

The major consideration in signing up for Hospice is knowing that their focus is
*** KEEPING A PERSON COMFORTABLE.
*** They DO NOT make decisions based on keeping a person alive.

Most (not necessarily all) medications will be stopped.
If there is an 'emergency' hospital / ambulance need, they likely won't take her - although ask.
These are the things you need to learn / understand.

And, once a person is in Hospice, they can be released from their care.

Ask yourself why you feel so scared about something you do not know about.
Is it losing your mom? (most likely / understandably)
Visions of what you think Hospice is vs what it actually is / offers.
Grief / grieving.
Nearing the end.

All this is understandable although your re-actions will be well served to check yourself and get all the facts / information before re-acting to unknowns. Don't waste / expend your emotional / psychological energy unnecessarily.
Make informed decisions, which will affect how you think and feel.
I know, easy to say.

In my experience...
* my friend was admitted (not terminal) as the MD in nursing home 'did him a favor' to get extra care. It was wonderful - for him.

* On the other side, my client waited way too long (months too long) and died after being in Hospice for two weeks). It helped me considerably as I was her personal care provider, where she resided (which had a nursing dept), and was extremely exhausted with all the 'emergency' needs - ongoing.
Through hospice, she was provided morphine enough to take away pain and breathing issues-until the end. They also provided me a lot of support, and follow-up grief counseling which helped me considerably.

Gena / Touch Matters
Helpful Answer (1)
Report

I sing the praises of both palliative and hospice services with regards to my husband. Unfortunately, there will always be negative experiences based upon the agency or personnel, but overall, I think both can have tremendous value.

Palliative care provided us with a wonderful healthcare partner in our nurse practitioner. My husband had multiple medical issues and symptoms and we finally had one person to help us manage them. Our quality of life improved significantly during the five months that we had palliative care.

His hospice care was more intensive than in many cases because my husband was almost at end of life when it began. He ate and drank what and when he wanted, which naturally diminished. Both palliative and hospice services are about comfort care and no one would have denied my husband a sip of water if he wanted it. The situation as described by another poster would be highly unusual fortunately.

It was also very clear to me that I was still in charge of everything; hospice was there to guide and support me. I hope Shelly69 will update us, unless I’m missing it.
Helpful Answer (2)
Report

Shelly, each person when considering Hospice needs to make an informed decision. Speak with more than one hospice if possible: some are for profit as others are not. Tell them your expectations and ask them what would be the plan of care. You are not stuck w Hospice just because you sign up. They will explain to you out of hospital DNR, etc. Ask if they have a pamphlet called “Gone from my Sight”. It gives you an idea of what to expect in the dying process and the changes we see occur. As a RN for nearly 40 yrs. I can say listen closely to them, ask questions and utilize the resources they can provide you. Yes, I have worked as a hospice nurse case manager and I have been on both sides w my father and brother. I was a caregiver for each in my home until they passed away. I’m sorry you are going through this. You are in my prayers. Make informed decisions early to be able to benefit from resources. God Bless you. 🙏🏻🙏🏻
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter