My mom and I met with the hospice case manager yesterday, and Hospice sounds like assisted suicide to me. Mom has congestive heart failure (she just told me that yesterday) end stage of COPD, asthma, cronic asperated pnemonia, panic attacks, etc, so we meet with the Hospice case manager, at the encouragement of Moms hopsital case manager. And they want her to be a DNR, and if she has trouble breathing then they will help her work thru it. If she gets to the point she cannot breathe, don't call 911, but for ME to administer the meds... are they serious !!!! So let me understand this... Mom can't breathe, so I am supposed to be ok with giving her a medication that will relax her so she can stop breathing...? ! ? I don't think I'm ok with this at all.
Everyone said "oh hospice is just wonderful." What I see is assisted suicide, and everyone else standing on the other side of the fence saying oh look, she has hospice, her daughter will be so supported we don't need to do anything to hel[ now...
My sister has medical PofA, and she is leading Mom down the path towards Hospice - before Mom is ready herself. You know how someone can influence an elder person? My sister is doing that, saying she is honoring Mom's wishes. All of us sibs interpret her wishes differently - that is the problem. Mom has a bit of short term memory problem (probably from the painkillers) - but no dementia. I don't want Mom to give up on walking and doing PT until she is ready to give up. She is not ready, too wishy-washy right now. Obviously no PT under Hospice - so think there should be no Hospice talk for now. Family disagreements abound, and the sister with the medical PofA likes and takes advantage the "P" part.
I am glad you got such wonderful help - I do believe in Hospice in general. And, I am very sorry for your loss.
When mom was in the middle of her night walks..up and down all night long. I was at my wits end. That's where hospice did everything for me to help mom sleep. Although after many trials of meds. I made it my own authority to take mom off of the drugs hospice prescribed and gave her only over that counter medications. I don't know what kinds of drugs your dad is on right now. But I do know with mom, if it didn't work or made it more difficult for her...I would immediately stop it. I had the control over what was given. I monitored her and distributed the medication and if it made her too groggy. I stopped it. I also went on my computer and learned as much about the disease and the medication that I could so that I knew what it did and how it affected mom. All of my hospice gals were very respectful and considerate. And if I had any issues at all I would call the nurse or the social worker and they would resolve it for me. I'm so grateful for all of them... I could not have done it with out them. I hope for the same for anyone who is offered Hospice. Because I believe they are angels sent from above. God Bless.
I wonder if your sister would be willing to hold off on hospice while Mother tries a round of PT? Ultimately this will be your sister's decision, since your mother gave her to power to decide.
Some patients go on Hospice and come off several times during this final stage of life. The family can even make that determination themselves.
I know this is very painful and stressful for your family. Please enjoy the time you have left with your Mother and not spend it being hurtful to each other.
Mom does want PT, wants to try, but hates it at the same time - very conflicted. Dr does recommend it, Psych Dr said last night he could tell she was depressed but not ready to give up. She is on antidepresants.
Jeanne - not sure I understand what you mean by PT and suicide relating. Mom IS making progress walking in PT - but no one can tell if she will be able to get in and out of bed and wheelchair herself (that is all Mom wants).
I am not OK with sister having the "power" even if it is legally true. It should be a collective family decision to interpret Mom's wishes.
All of you on here are fantastic. And everyone having a different a range of experiences, different stages of the process that have been experienced, is
invaluable. Thanks and hugs to all!
This sounds a lot like "assisted death", even though he wanted to live. Just about a month before all this he still drove, took long brisk walks, etc. I think Drs and palliative are just writing our elders off. When I met with his Dr a month or so after his death, she said " he would've only gotten sick again" when I asked a few questions about his treatment. Guess we should all do away with ourselves because we might get sick. What's sick is not feeding someone for 3 weeks and then finishing the job with morphine. I don't know why I believed they knew best at the time.
Sorry this was so long. Yes, I believe hospice/palliative care is definitely assisted suicide in many cases, and in many cases it's something even worse. And people who tell you that starvation isn't painful haven't experienced it themselves, so there's no way they can know this for sure. I'm so sorry you are going through this. As long as your loved one expresses a will to live, stand up to hospice/palliative and fight for your loved one's right not to be written off because of their age.
If you don't, you'll never forgive yourself, I know.
It's inhumane the way our innocent, trusting elders are being ushered to their deaths by the very people who we trust to care for them. Of course a person will die if they are not fed for 3 weeks and given ever increasing amounts of morphine.
The way society is going, letting hospice/palliative kill off our elders is just barbaric. My Dad told me he wasnt in any pain but they said the morphine would make him more comfortable, when actually it made him unable to breathe and I too will never forgive myself. I think they took advantage of our trust in Drs/palliative and that we were under extreme stress. Its barbaric that they wouldn't even treat your Mother's UTIs, etc. except with morphine. It's Drs/palliative/hospice that should suffer the guilt over their selective extinguishing of the elderly. Just because they feel the elders lives aren't as valuable as a younger person's. I wonder if they'll feel that way when it's them lying there being drugged, and in my Dad's case starved, to a much hastened death. This slow death by sedation is nothing short of legalized murder and I don't know why we, as a society are not challenging it in the media. At the very least it would make people who have yet to deal with it not to be so trusting. I'm very sorry you are feeling so guilty, the guilt should be felt by those responsible, Drs/hospice, not you. I feel it every day too and its been almost 2 years. You did your best, please remember that. I'm so sorry about your dear Mom, and I'm so sorry for how they mistreated her. I hope you can find peace of mind knowing that we are only guilty of trusting the wrong people.
On a tangent, I had another set of relatives who believed hospice had "killed" their patient with a morphine overdose. But again, they misunderstood that, when a person is drawing their last breaths, the hospice way is to ease them unto death in a gentle way. The dose they give is not enough to kill a person who would not be dying. This is why it's such a controversial thing to legalize assisted suicide. If hospice were doing that, we wouldn't need to lobby for it, those who want it for themselves when the time comes. So in my humble opinion, as they say, Hospice is not at all assisted suicide. It is a gentler path to inevitable and imminent death. I hope I haven't stepped on any toes here, but I just have been dealing with this with mom and dad. One other thing: when you go into hospice, they discontinue a lot of the patient's meds. Not all, but many. I think anything that they feel is no longer helping, or crucial is eliminated, and they keep only those that would cause a sudden death sooner than the original disease from which he's dying. My parents ended up continuing some of the meds the hospital had canceled, and hospice still provides them. For free. So in his case the hospital seemed more aggressive in their expectation of his demise than our hospice. PS. I'm not a hospice worker or manager or in any part of that profession, I've just been so impressed by the level of care and compassion that my dad has received from them. and also the rest of us.
I am so sorry that you had such a bad consultation. It sounds like you were consulted by a company that minimizes care in the name of maximizing the bottom line. Of course, I'm with a company that is willing to sacrifice a few bucks for the sake of patient care. We always ask (and only hire people who will ask), "How would I want my own husband/wife/brother/sister/son/daughter" treated and treat them in that way. If a doctor makes hospice referral to a specific company (without asking you) is also medical director of that hospice stay far far away. It's not only violating the Stark Act, but it shows me a hospice company that will engage in deceptive practices to get patients instead of letting their patient care speak for itself. Look for a company that has a robust and well paid chaplain and social worker staff who are not merely contingent labor. These are non-billable yet required (by Medicare) services. A company that values these roles values patient care.
Hospice wasn't going to be there....they were just going to have the medication to her and she would be left to administer drugs. Yeah, I wouldn't buy into that either. Hey....if hospice is there to help...then they need to BE THERE...not leave it to the daughter to handle it.
I have read a lot of posts from people who had a loved one on hospice...yet, at the end...it wasn't hospice there...it was just befuddled and bedraggled loved one...with hospice (maybe) on a phone.
With Hospice you know that your love one had a peaceful passing with very little pain. I use Hospice for both my parents, and everyone was so helpful and caring. They were an extra set of eyes and ears in the facilities where my parents had spent their final times.