I had an account under another name awhile back and had expressed some fears that this might happen. A very insensitive and UNEDUCATED (the dumbest are always the most vocal, sadly) idiot on here tore into me for saying that in our area, hospice aggressively removes all medicines. She smugly talked about how any doctor who has noticed such behavior needs to be schooled and is hurting patients by warning people that it can happen.
NOW I'M IN THIS SITUATION EVEN HAVING BEEN WARNED THAT IT MIGHT HAPPEN!!! I can't believe with all of my forewarning and concerns, I'm now fighting the hospice nurses to NOT kill my dad. They are snowing him with morphine! Just because there is a standing order for morphine if he needs it (great idea- I'm all in for that, I don't want him in pain, ever) doesn't mean that they should come in the house and snow him to 88% O2 sats! If I hadn't stepped in he would have been dead today. My poor mom is being run over by these people. We really need to move him to palliative care but now that they have initiated treatment I'm feeling stuck. Trying not to make waves with these nurses but good GOD, why are they so hellbent on putting him to death? It's like they only believe that hospice is appropriate for people who need to be morphined to full dose 24/7! I'm so frustrated. He was doing fine on Tylenol/Motrin around the clock and it was managing his pain just fine. They ALSO tried to bully my mom into:
- removing Flomax
- removing all blood pressure pills
- removing Synthroid
- removing iron (he takes it once a week, oh the horror!!)
- removing multivitamin
- removing aspirin
- removing Tylenol and Motrin (!!!!! Isn't hospice about COMFORT??)
We've initiated hospice because we don't want AGGRESSIVE treatment but he easily has several months/years possibly left. There is no terminal condition. I totally regret having done this now. Has anyone else successfully moved to palliative care after starting hospice? I feel like these nurses are going to go completely ballistic on my mom and me JUST FOR suggesting that he stay on his prior meds. The one nurse argued with me that Synthroid is treatment and not appropriate for someone who is going to die in a few days (!!!!! this was weeks ago and he was alert and sitting up joking etc.) I had to delicately dance around the subject and say, "Oh, it's just for comfort. We all feel better when our thyroid is supported." Why am I having to dance around them and accommodate them? I thought the family and the treating physician should be the ones making these calls?!? I wish we had never started this. So frustrated and saddened. Vent over.
The hospice nurse IS NOT the one who gives the morphine, or anything else, your mom is, or you. So if you don't want him taking the morphine as often then just don't give it to him. And if you want him to take his other medications you just give them to him.
You are giving hospice WAY more control than they actually have. Why?
You say that you don't want to "make waves" with the nurse, but guess what, sometimes we have no choice but to make waves.
My late husband was under hospice care in our home for the last 22 months of his life and I was the one who gave him ALL of his medications, including any pain medications.
And if hospice thought he could stop one of his previous medications and I didn't agree, I told them so and they weren't stopped. I had to make waves with them ALL the time as I wanted my husband to get the best care possible.
You and your mom need to get a back bone here and stand up for what you think is best for your dad, and start making some waves. And if need be you can fire this hospice agency and hire another.
But remember, you and your mom have the final say about anything that hospice may suggest. PERIOD.
Your dad, because of his dementia, may very well not understand the full implications of his health situation. The arthritis must be terribly painful if it keeps dad in bed and may require morphine to relieve the pain? Maybe Tylenol no longer works for him?
I would not hesitate to have him evaluated by another hospice organization, try to make it a non-profit. It sounds like palliative may be appropriate, but that is.just a guess as I am not a medical pro nor hospice provider.
I'm about to go over there again and help him with the new bed. They brought in something a bit "fancier" but it only has 3/4 railing so he's getting used to learning how to work the new buttons.
Re: nursing home, we have around the clock in home health aides. We are paying less that way than if he were in a nursing home. Funny story: when he was discharged from the hospital a few months ago for a UTI the nursing home COULD NOT CONTAIN him even though we were paying $800 a day for a semi-private room. We had to hire sitters on top of the daily rate to stay with him or stay with him ourselves! He was not ready to start sitting up and walking yet (he was in step down rehab) but he wanted to leave and they saw it as a legal falling risk (which I get- we are a sue happy society). It turns out that it's cheaper and far more pleasant to just have 24/7 help at their house. They are a lot happier that way.
There has been some disturbing press recently about hospice in some parts of the US recently. You may be signed with one of these bad actors.
Tell the doctor that you will need to find a new organization if they don't back off. And yes, they will have to switch out the bed, etc. It's not such a big deal if the patient isn't actively dying.
In general, hospice doesn't push death. But the requirement to be on hospice is a life expectancy of six months or less due a terminal illness (including dementia). A doctor diagnosed your dad with this, and your mom (or dad) accepted hospice. So while hospice doesn't push death, it does prepare the family for death.
Is your dad on Synthroid because of cancer or hypothyroidism? If it's for cancer, then yes, hospice patients are no longer seeking treatment for their disease.
Palliative care goes hand in hand with hospice care, but not all people on palliative care are hospice patients. Your mom (if medical decision maker) or dad can be removed from hospice, but then you lose the home health aides, etc.
88% O2 sat is not that low. I have a client's wife whose sats drop to the 50s, and she's still walking around and going to the grocery store.
It seems you need to talk to the doctor or nurse yourself and ask about your father's prognosis. If a doctor thought he had years to live, he wouldn't be on hospice. Nurses for hospice are specially trained to see things (like pain) that the patient might not want to tell his wife and daughter.
If the nurses are bullying you and your mom, you need to report that immediately. But I also hear a lot of fear and grief in your post, which is a completely normal reaction. There are hospice counselors for you, too, and a talk with the program coordinator sounds like a necessary step.
Please let us know how things go.
It sounds more like he needs to be in skilled nursing rather than at home.
I cant imagine mom (at her age) or you being able to continue this for years.
And even at home hospice does not offer much relief and help from the care your dad now requires.
It may be better to stop hospice and place him in skilled care to take the physical burden off of mom.
To keep having to fight with these nurses not to overdosecdad in morphine just adds to moms and your stress.
There are no easy solutions for mom, dad and you. I am sorry for what you all are going through.
I also see you are giving dad a multivitamin but what kind of supplements are you trying for his arthritis/pain? Glucosomine condrotin and msm can help with that. I would give him that over a multivitamin if I had to choose between the two.
I think once they met me in person and saw that my mom and I are not unreasonable or stupid they totally get it. He is doing great. I just got back from visiting with them after taking dinner over for them. Now that they are better set up and my mom's far more at ease with the current plan I know she will sleep well tonight. They were watching Johnny Carson reruns when I left them.
The nurse wasn't even offended when I told her that we had run his bloodwork and I explained that his thyroid is slightly undertreated right now (probably why his hands are cold despite good hgb levels) and she didn't even bat an eye at treating it. My mom sighed a huge breath of relief. She had been so terrified that he would die if they continued with the morphine like this and most likely he probably would have.
For those with parents with memory loss (I can't really say my dad is demented- he's never been given that diagnosis but he DOES have major short term memory issues- we think it's vascular after he had his gall bladder removed and he had anesthesia) I wanted to let people know that he's retaining memory WAY better after having done gamma wave listening for three days! Look into it. (Remember he is not Alzheimer's but this has helped his memory only- but it could be helpful with AD too.)
Many people would gave just accepted hospices direction.
Glad the hospice is now on the same page as dad, mom and you.
This board is an invaluable teaching tool. It has been for me.
A person has to qualify for hospice. If they didn't Medicare would not be paying
They also are reevaluated if 6 months has passed. I think it would be helpful with getting advice here if you explained more about your mother's medical issues and why hospice was initiated. One cannot choose or not choose hospice if medical criteria is not met.
I told Mom when hospice comes today don't let them give him morphine unless they call me on my direct cell first. I left a note too. She is onboard with that and also thinks it was a horrible experience for all of us. FYI the Synthroid is for hypthyroidism. There's no cancer. The "dementia" is memory loss but it's been at this level for about 8 years now. The only difference is that now his body is a bit more feeble than it was when it first started. Thanks for all the suggestions!!
I hope you will do research on the meaning of hospice care, and will discuss with your Dad's MD whether or not your father is dying, who ordered hospice care, and why.
The person acting FOR your father, or your father himself, along with the MD has made the choice to have Hospice care.
If your Father or the person acting in his behalf do not wish END OF LIFE care now, they should speak directly to the MD to have Hospice cancelled at once. If they wish to continue end of life care it should continue.
I am so very sorry for your anger and your pain. You and your mom are facing a dreadfully hard loss. Please try to support and comfort your mom rather than adding to confusion in her mind at this time. Take your concerns to the MD who ordered Hospice care, to the Hospice clergy and social workers.
We cannot know all of the details involved for your dad now. We must trust in his MD, and in his or your Mom's decision for end of life care. We cannot know your Dad's wishes or his beliefs. My own advance directive requests that I be medicated with morphine below the level of dreaming even should it hasten my death. I believe that Hospice is/SHOULD BE now concerned with the wishes of your father, and of the person designated to speak for him when/if he cannot.
Again, I am so sad for you, and my heart goes out for you, and I hope you get grief support for yourself at this time.
It's been an eye opening experience... I am so thankful that they don't chintz on giving someone morphine in these situations. For someone who is actively dying and suffering that is a nightmare. Like you alluded above that is exactly what I would want too- if there is no chance for me to have any quality of life, I just want to be snowed out beyond any awareness, like you are when you're in anesthesia.
I am not the kind of person who enjoys "snitching" on people. I like to go to them directly and tell them what I wish they would do differently first. These nurses are GREAT at so many things- they are masters at bathing (quick and painless, they know all the tricks on how to keep things simple and thorough), they can change out Foleys, they can get good vitals. They just don't know that sometimes people elect hospice when they aren't terminal... the primary and the hospice doc both know that he is not terminal but very old and spends a lot of time resting. This is of course not a patient they would recommend doing chest compressions on if he flatlined and we wholeheartedly agree.
Lesson learned I guess: despite what people tell you, make sure you watch the situation and don't let anyone administer medicines without asking you first. That's my current plan... it turns out that the hospice doctor did not withdraw any of the meds (because she consulted with primary) but I guess the nurses feel these meds are not necessary (again, out of habit). I'll just ask them politely again to stop trying to remove the Synthroid etc. and if they make it into too big of a deal I'll go to the doc- but again, I hate being a little snitch if there is any way to resolve on my own. I like that people here have repeated that WE are the ones in charge of deciding when to give medicines regardless of what they would like to see happen.