Question about hospice?

I wouldn’t go in with the attitude of demanding. Meet with the hospice provider and see what they are offering. It will probably be on the order of stopping by once or twice a day to administer meds and see that she is comfortable. It might be more than that or you might want to supplement with a home health aide. The hospice people should be good about assessing her needs and coming up with a care plan.

I have done respite along with hospice providers (meaning that I was the person who would come and spend 8+ hours per day, 5+ days per week with your loved one) and my experience in working with hospice providers is that they are probably a few steps ahead of the family. They may be better to tell you what to expect than you can tell them. What you wish to “demand” of them really depends on what specific needs your family will need to have met.

When my father-in-law was at that point, his sons engaged round-the-clock home hospice care for him (“It’s the old man’s money. Let’s spend it on him.”). They were excellent, right up to the end.

Perhaps there are family and caregiver support organizations in your area where you can get word-of-mouth referrals to hospice providers. In your place I’d ask for such contacts at the hospital, ask the doctor, and search online. A good provider should know what to do.

I suspect the hospital will suggest a hospice provider.

If you are planning home hospice care one thing you might want to know is that when your mother passes you can delay the mortuary transport people if you so desire.
They will ask you if you want to keep her for another 24 hours or so or have her taken at that time. Some families want to keep their deceased loved one for some extra time. They will also ask if you desire her face to be covered when removing her from the room/house or if not.

Yes, many times the family members do their own hospice as my ex MIL had when she died a few months ago.
My daughter ( her grand daughter ) and her other children took on round the clock vigils the last week or so in like 4 hour shifts, night and day.

One thing that is also great about hospice is that they know when death is near and will tell you what to expect through the process.

It is truly a wonderful program!

First off I/we are not demanding anything we are advocating for mom. We did meet with a hospice rep who essentially laid out that we have options…stay in the hospital with full palliative care, or go to a rehab facility where they can continue IV’s and other meds….or move mom home where it will then be up to us to supply meds and fluids 24/7….just wanting to see which direction others have gone….

Hospice workers are absolutely wonderful. They will assign someone to your Mom who will check in on her regularly. They will administer and teach your family to administer pain medication even when the patient cannot swallow or is not conscious.

They help the transition including with family members who are having trouble.

What they don’t do is provide any medical care other than pain control and comfort. So, for example, my mom had an incurable heart condition but shortly after going home for hospice care she developed a prolapsed uterus. We showed the problem to the hospice caregiver who said that if we wanted it treated or diagnosed she would have to go to the ER. In the end, it required no care since she was in hospice, but the trip to the ER was hard on my Mom.

When my sister was dying, she looked into hospice care, but could not qualify because all drugs have to be stopped except pain medication. Her condition, primary pulmonary hypertension, required ongoing medication directly into a line in her heart or she would have expired in a matter of minutes. When she died, her husband did not know what to do so he called the hospice program. Two of their workers came over even though my sister had not been under their care and cleaned my sister up so that my mother could see her. They were very kind.

@Cruiser I hope you don’t feel I was being critical; I was just reacting to the word. I fully empathize with where you are at. Is your Mom conscious enough to have a voice in the decision? Are there family members who are willing to provide the care if she does come home? Sometimes a person lasts longer than the prognosis given and if she is at home, you have to be aware that more time may be necessary. Maybe a visit to the rehab center is warranted so you can assess what that might be like?

The closest direct experience I have to it is when my cousins were dealing with their Mom for three months at home while she was dying and found it very stressful – particularly as they were going back and forth. But their Dad did die at home and the hospice told my cousin how to administer the morphine.

I guess my thinking is that you have to look long and hard at what you feel you can do as well as what your Mom would prefer and see how best to accommodate everyone’s needs. You have job and your own family’s responsibilities too.

@janbb I was not reacting to your word or meant to call you out as you have been every bit of compassionate in this journey I am on and cannot thank you enough. It comes down to so many options we do have and I want what is best for mom first and for most…but there is a certain practicality to where we are at and asking what worked best for them.

@Cruiser oh good! The rest of my answer was meant to address those options.

I’m a hospice volunteer. I also midwifed my mom (along with my sisters) through the most amazing death I have ever heard of.
Hospice is there to help you in what ever you need. They can provide a hospital bed which makes caring for her much easier.
The nurse will come occasionally to make sure she has the appropriate amount of pain and anxiety meds available to her.
They have chaplain service if you want it.
They have someone to come help bathe her if you want it.
They have people to offer respite so you can get out, do shopping or just get some air,
they have massage therapists if your mom could benefit from that.
Sometimes they have harpists that will come play for her.
They might even arrange a choir to come sing to her if you want it. I think they’re available in a lot of communities. It’s called the Threshold Choir.
They have potty chairs, bed pans, diapers, mattress pads, walkers and all the items you might need to keep her comfortable at home.
Our hospice has someone who takes some of the loved ones clothes and makes teddy bears for the family out of them. I think that’s nice.
I am also on the bedside presence team which just holds vigil when the family can’t be there in the final day or two to insure that no one dies alone.
Basically, we are here to help your mom and you make sure she is able to die on her own terms.
On top of all they do, their services are covered 100% by medicare

I was a live-in caregiver for an elderly couple when the man (who was 93) was diagnosed with pancreatic cancer.

It was obvious that there was no treatment and the family elected to get hospice as it got close to the end.

The hospice people were wonderful and really covered all bases giving people choices and going by the wishes of the family.

What I found most helpful (Since I was there all the time) was that they had a 24/7 number to call staffed by very knowledgeable people. When it finally was close to the end (a few hours) they described in detail what we could expect, even tho it was 4AM and also sent out the male nurse who had been assigned to him who coordinated with the funeral people, prepared the body, etc.

He had a very peaceful passing and even in the months prior was never in discomfort or distress. When his breathing became a struggle, an oxygen machine was arranged.

I thought it was also wonderful that there was a male nurse for him because he had no short term memory and trying to convince him to use the urinal rather than risk a fall getting out of bed was really difficult.

But one day John spent about 45 minutes with him going over all the options and explaining why the urinal was the best idea for him.

John must have repeated it all numerous times. He was so patient with him. And the amazing thing was that whenever we had a problem with him wanting to get out of bed, just reminding him that John felt this was the best immediately calmed him.

I don’t know if he remembered everything John explained but something clicked in his usually nonexistent memory. I think it was because Johns extreme patience and genuine compassion made an impression on a level so deep that mere information was insufficient for.

I can’t speak highly enough of the hospice team. They knew what was needed before any of us even knew to ask.

If the hospice people in Your area are even half as good, I don’t think you’ll ever regret going this route.

And most of all, don’t hesitate to ask them any questions you have about any part of this. They welcome it and there’s no such thing as a stupid question.

I pray that your mother can enjoy whatever time is left in the comfort of her own home with loved ones and have a peaceful passing as this gentleman did. I hope you find strength and support to lighten the burden a bit for you as the hospice workers do what they do best.

The hospital’s social workers sometimes have some insight or connections to worthwhile info/ help. Check your local branches of Dept of Aging, and American Cancer Society. Their offerings and experience in decision situations have proven invaluable. A thousand and one decisions and tasks are overwhelming and sometimes too heavy. Listen if they have ideas for you and yours also. My heart goes out to you all. I’m so sorry.

Just an update….once you make that call to hospice…they do it all. Mom is home now and I am truly grateful for all the care and support hospice is giving her (and us).

@Cruiser, good news. So how did you find the people you called?

That’s so wonderful to hear. And it gives you some relief from fretting over all the details that can really be so overwhelming.

Your Mom must be so glad to be back in familiar surroundings and hopefully she can relax a bit knowing that she’s in competent and comforting hands. And you and the rest of the family can come and go without having to be limited by “visiting hours”.

@Cruiser Great. I think that was what I and the others were suggesting to you. Hospice does a great just of assessing what you need. Glad to hear it – what a relief!

@Jeruba There are really only 2 hospice agencies where my mom lives. We met with both and if not for strong recommendations for one of the agencies from her close friends I would have had a hard choice to make. Withing 4 hours of signing the papers we had a hospital bed delivered and mom came home the next day. She is loving being in her own home and the hospice nurse has been attentive beyond my expectations. So much less stressful than the cattle ward at the hospital.

Depends on “her” Personel Directives that I am sure that she or her guardian/trustee agreed on before she entered Hospice. It legally is HER choice, not yours.

@Inspired_2write I am not sure where your comment came from but that is actually not always the case. Absent a spouse as in our case, by default it falls in the lap of the eldest child to decide IF there is not a medical directive assigning that responsibility to another offspring or caretaker. In our case my mom did make all her own decisions, signed all the Hospice Papers and a yellow DNR paper signed by her is posted on her refrigerator where it is best kept. Plus my mom had an attorney draft her medical directive appointing my youngest sister as the one who will make any final decisions if and when my mom becomes unresponsive. So far so good.