Palliative Care and Hospice Care

That is exactly why I had my chemo, to just shrink the many areas where it had metastasized to and hopefully extend my life. It has been almost a year and a half and I am still enjoying my 5 grandchildren ! So I am receiving "palliative care" and we will accept hospice help when ...as I put it...I "start to actively die" for now I try to live my life as normally as I can and do what I am still able to do. I think we have to be willing to accept help not only for ourselves but for our family members. I am constantly thinking of how difficult this journey has been for my husband and son and close friends. Whatever I can do to help them ease thru this I will do.

I am in hospice already and have been talking to them. I am very frustrated by the very slow response. Someone just give me the name of a reputable company

I also have signed a POLST

Hello, @goffinetws -- welcome to Mayo Clinic Connect. What I'd like to do is introduce you to some Connect members who may have some thoughts for you on reputable hospice organizations, like @IndianaScott, @vthatch, @keeptrying and @jimhd .

How long have you been in hospice?

Hello @goffinetws Nice to e-meet you here and I am sorry to learn you are in hospice care. My wife chose home hospice care for her needs. She was in hospice for 14 months. It will depend greatly on where you live as to what hospice companies operate in your area. At one time we had four in our county, but now only have two, so things can change. There are also nonprofit and for-profit hospice organizations. What area are you in and have you looked at all the hospice offerings in your town?

Strength, courage, and peace!

@goffinetws

I have volunteered for hospice, visiting clients in their homes or care facilities for an hour or so a week. There are two operating in our community.

I don't know of any national hospice group. My understanding is that you need to look at what's available where you live. I've read stories about great ones and terrible ones. I hope you have one of the great ones.

If you feel that the organization isn't doing what they promised, speak to the director. I resigned as a Hospice volunteer awhile ago, but I still visit one woman because it means a lot to her. She never leaves her bed in a long term care facility that's not the greatest place.

What are your hospice people slow about? I know that sometimes they get overwhelmed by the needs of the people they serve. Weekends can especially be a problem.

Hospice was a blessing to me my parents, and to my sister who was caring for them. I hope you'll have the positive experience they did.

Jim

My husband and a very dear friend were on Hospice. I believe they are just overworked. When my husband died the Hospice nurse was with us in our home. It took about 4 hours for my husband to pass. He had been in the hospital that day because my daughter recognized he was dying. NOT ME! I had the ambulance take him home to die. It is the only way I want it, but now that I sold my house, I guess I will take what I get. Every Hospice is unique to the people who work there.

I have Palliative Care. Technically. On paper. Thus far? It literally means NOTHING. I'm still being treated like some sort of drug-seeker because I'm desperate for ANYTHING to help me survive the terror of have THREE rare cancers, and probably more, because I'm just at the start of this horror show. Pain is awful and at times unbearable. But the ANXIETY? Completely unbearable. I have tried EVERYTHING, including most SSRI/SNRI and Try-cyclic medications - all of which not only did nothing, but harmed me, and almost killed me. (Cymbalta was the worst.) I have done - and continue to do - Mindfulness, and the nauseatingly long list of therapies that are SUPPOSED to help, but don't for me. God, I wish they did. I wish I COULD take these meds, but I can't. They will kill me faster.

Palliative Care is represented to be for patients with a serious illness that requires medication management as well as therapy. I'm not against therapy, but historically it just makes me more anxious. I'm glad it helps some. I need to get to a place where I can think, and I cannot do that when I am doubled over in pain from crotch to eyeball, writhing in agony and anxiety that is consuming me.

I'm also quite angry because this shouldn't be happening. To anyone. There IS medicine that I know would help me. But it is now politically incorrect. Even mentioning a Benzo and/or an Opioid can elicit a gasp of horror from the new crop of doctors being puked out of medical school. And some of us? We're slowing dying. Why not just help us? Worrying about patients who are heading towards being "terminal" becoming "addicted" seems like a moot point. I'll give an example: one of my dearest friends died HORRIBLY from Bile Duct Cancer. I mean, HORRIBLY. Our first visit to him in the hospital, his feet were rotting off from the chemo and he was writing in agony in his hospital bed. The nurse said "Well, its not yet 'time' for his medication, and we don't want him to get 'addicted.'" My friend was dead 2 weeks later.

This is how seriously ill patients are ACTUALLY being treated. Its criminal.

This is what is happening. And I'd rather die at home in my bed where at least I know I can get to a bathroom. That's a separate topic for me, the fact that hospitals and ERs make that necessary task so difficult to accomplish. Its almost like "Screw having any dignity as you hobble towards the River Styx."

I'm terribly bitter. I acknowledge that. I would be less bitter if I were getting better medical help and not a bunch of useless spin. That's not a nice way to treat ANY patient, and it is unnecessary.