I hope I’m not duplicating this. I thought I posted it a couple of days ago. Can’t find it now.My dad is 95 years old with severe Alzheimer’s. On hospice for 3 months. Moved him a month ago from a 45 bed ALF to a small 5 resident ALF for more personal care. No communicating, wheelchair bound, incontenent, has to be fed, and increased sleeping more. He does have periods where he is very alert and interactive with smiles and laughs and nods . And clear eyed with a twinkle at times. But this past week he seems to be sleeping a bit more in his wheelchair, but is still eating well and wakes up from time to time to look at us and smile. One of us kids visits every day, but it’s usually around 4 o’clock to visit and feed him dinner. I say this is later in the day and he’s probably more tired than the first part of the day. The ALF staff says that he is more alert the first half of the day.That being said there are two issues with medication that my sister (who is a bit more controlling and pushy) is wanting me as POA to press with hospice. He has been taking .25 mg of trazodone for the past couple years due to previous aggression and helping him to sleep at night. With his increased sleepiness, my sister wants to stop the trazodone altogether. The hospice nurse/doctor said he is doing well on his current medication’s and does not want to change anything. Sister is not happy and telling me I should push them to stop the trazodone. Dad also has had basil cell carcinomas pop-up for the past couple of decades (due to his time on the Airforce tarmac and lots of tennis). He used to get.Mohs surgery to remove them but now we don’t want to do anesthesia so we were most recently just treating with a chemo cream, Flourousil, alternating with a more calming cream. This was prescribed by a dermatologist who would visit him at the other ALF prior to going on hospice. He has developed a couple of basal cells on his forearm, but hospice only wants to treat it with Metronidazole, that seems to be more of an antibiotic because his cancer spots looked so angry. Granted, when they use the cream of cream at the other ALF, it would definitely eat away at the basil cell an ulcer then they would switch to the antibiotic/calming cream. But hospice does not want to prescribe this chemo cream because they say the ALF is not certified to handle medication’s that have radiation/chemo in them. My sister also disagrees with this, and once our private caretaker to apply the chemo cream herself as we still have a whole tube left over from three months ago at the other ALF .Finally, dad had a history of some diabetes after his heart surgery 14 years ago. His numbers had been pretty good the past few years, but my sister wants them to start checking his blood glucose in the mornings a few times a week. The hospice nurse said no, they would not do that.I am guessing the answers we get due to the hospice does not treat to cure things. It’s more for comfort care. But is anyone more familiar with hospice and why they may answer these questions like this? Of course, my sister is not very happy. IV it that dad is comfortable there, safe and happy and that has always been our goal the past a few months since we moved him on hospice.
Hospice philosophy and 'care' is totally for comfort care. It isn't a matter of 'more' - this is a huge difference that you need to be clear on - and should have prior to signing up your dad for Hospice services / care.
It sounds like you need to re-read your contract with Hospice and talk to the administrator to gain a clarity of what they do / offer / and do not do.
I am not clear on the relationship with you and your sister in terms of legal authority / the decision maker for your dad's treatment / care. Your sister seems to have very strong preferences / opinions and then EXPECTS you to carry out her wishes / instructions.
Are you okay with how your sister interacts with you in this regard?
Do you want her to have direct contact / decision making with Hospice.
Do you feel you sister is interferring 'too much' ?
I would suggest that you and your sister meet with the Hospice administrator or manager and find out exactly what services they offer and will offer to your dad. Everyone needs to be on the same page. You and your sister need to read the contract you / your sister (someone else) signed to have your dad in their program / care.
If your dad is happy / content where he is, that would hold all th weight in decision making if I were his daughter. Comfort care is what hospice offers. They do not advocate or offer services to keep a person alive; they support / help a person not feel pain, which is a part of comfort care.
Gena / Touch Matters
I'd vote for the comfort meds over all. As people age, they sleep more and more. Let them!
You're POA? Use that 'power' to do what makes dad comfortable and calm. You won't look back and wish you'd done differently.
Your father is dying and he is being kept comfortable and pain free. Hospice means, no extreme measures. So why check his sugar daily. Let him sleep.
The goal of hospice is to stop medical interventions and use comfort meds only, or mostly, to keep dad feeling no pain or anxiety as he takes his final journey here. If the antibiotic cream is calming for the lesions on dad's skin w/o being curative or eating away at the cells of his skin, that's a "comfort" measure w/o being curative. If he starts feeling pain, he can be given meds to take that pain away.
As far as blood sugar goes, why bother poking him if he's not going to get insulin IF is sugar is high? With Trazadone, hospice doesn't want to dx a med he's taken for a long time to possibly cause unnecessary side effects. What for? Dad will be sleeping more and more as the end approaches anyway, it's not the Trazadone making him tired, it's the death process itself.
When my mother was taking Ativan during her hospice run and they increased her dose slightly due to agitation issues, about a week later she started nodding off more in her wheelchair. I convinced myself it was the Ativan and asked the RN to reduce the dose again, but mom kept nodding off regardless. It was because her body was transitioning and she was exhausted after 95 years of life and suffering from advanced dementia for 6 years. Nothing else. Most of us want to blame hospice or drugs or lack of drugs or SOMETHING, anything, for our fathers or mothers dying. But it's just the natural cycle of life, nothing more.
Please accept my condolences for your sadness and angst, both you and your sister. Only those who love deeply know and understand this sadness. God bless you.
End of life care means that the goal is COMFORT and not long life.
Make this clear to sister.
Also make clear to sister that you are the POA and that you will discuss with the doctors and the nurses of Hospice what steps are to be taken and are not. Tell her that if she makes you uncomfortable or if she questions you overmuch you will discuss NOTHING with her and will refer her to hospice. Tell her you will listen to her concerns and discuss all with hospice and that you and hospice will make all final decisions.
Your father is dying.
He is on Hospice.
He currently is comfortable and that is the goal.
Basal Cell Carcinoma is not going to kill your father. Again comfort is the only goal here. If creams and potions make him more so, then decide to use; if not, do not. The fact is that he will become more and more sleepy and more and more bedbound with less and less eating. That is to be expected at the end of life.
Again, you must embrace your role here. It is not to discuss and argue with others but to protect your father's comfort at the end of his life with the help of hospice.
Good luck.
Your sister is not in control.
Your sister cannot make a doctor prescribe chemo cream.
Your sister cannot make an aide apply said dangerous chemo cream.
Your sister cannot make them take his blood sugar.
Your sister is NOT in control.
Your father is dying and your sister cannot prevent that from happening.
Your sister should be thrown out of the facility if she tries to sneak in a chemo treatment cream. YOUR SISTER IS NOT A DOCTOR. She is delusional if she thinks no one will notice that she decided to impersonate a doctor and treat a medical condition. The facility is in their right to ban your sister from visiting and they will— and your sister will have deserved it.
You don’t TREAT conditions in hospice.