Dad's dementia and health are taking a turn for the worse this week and I'm scared. He is living in Assisted Living with mom, but has been battling a UTI and getting frail and weak very quickly. They had him on antibiotics for seven days and it ended about a week ago. This weekend, he took a nose dive for the worse, has a fever of 100 to 102 (their forehead thermometer doesn't seem to be very precise), is not responding to us much at all, needs two people to get him up, not eating much, etc. I asked him if he wants to go to the hospital and he emphatically said "no!" I asked him if he gets worse than what he is now, would he then want to go. He said, "yeah" (half-heartedly.) I'm not sure he 100% understands, but he hated hospitals/doctors in the past. I am trying to honor his wishes (trying to figure out what they are, too!), he hates noisy hospitals/rehab facilities, his decline was dramatic when he went there last, his care was awful, he was soaking wet most of the time, --- it was very stressful and he never returned to what he was before that time. I'm scared to have him go, but I'm scared not to. I'm fully expecting a call from Assisted Living tonight or tomorrow, because he doesn't look well. It sounds like Assisted Living will honor my/dad's wishes, so now it falls on my shoulders with that decision. I would love feedback. I know I can contact hospice --- just didn't think we were at that point yet. At what point do we decide on palliative care and assisted living just giving oral antibiotics and bed-side care? Is this even an option, or do we move directly to hospice care? How do I know how to proceed? I don't want my father dying in a cold hospital, but I don't want to be negligent of his care by keeping him "home."
Edited to add: I am medical POA and dad has a DNR.
I understand where you're coming from. After a terrible two-week hospital stay during Covid when I wasn't allowed to visit my mother (and she had dementia), I made the decision that we were done with hospitals and she would be treated in place at her memory care from that point on. She never had a major crisis again (she was in the hospital for sepsis and it was taken care of), and the next eight months were much better all around.
I think it's better to make an informed opinion than take a shot in the dark. He might be able to be treated with IV antibiotics to knock out that UTI, THEN you can make the decision to do palliative care or hospice care, but find out first.
After this acute episode is over, consider getting a Hospice consult.
When I realized that EVERY trip to the ER or hospital stay set my mom back more than it helped, we asked for Palliative care only.
The big difference of course, was that mom was in a Nursing Home. Perhaps your dad needs a higher level of care.
I would call his primary and see if s/he has a suggestion that doesn't involve a trip to the ER. Like perhaps a visiting Nurse Practitioner or Doctor.
Do you fully understand that your Dad will likely die of sepsis if he does not go into the hospital? Are you willing to make that choice for him?
I think that you will have to make this choice if the facility asks you to and if you are medical poa for your Dad. He has told you he would want to go in if he becomes worse. I don't see what choice you will have.
However, once at the hospital and under treatment (likely with IV antibiotics, it is time to call in Social workers so that as part of medical Discharge planning this situation is addressed. Whether Dad is adjudged by MDs after treatment as with fewer than 6 months to live may dictate whether or not he can enter hosice, tho they do tend to fudge that a bit now for the extra supportive care. He certainly can make the informed choice for palliative care, for no transport to hospital, for a DNR/no code status, for a POLST hanging in the room warning EMS personnel not to do CPR.
I am sorry that this was left so late as this makes your decision now quite difficult. I would support your acting in either directions, but think that the ALF will not take responsibility without clear written instructions.
I wish you the best and I hope that you will update us. I am so sorry this is left in your hands, and so sorry he isn't doing well.
When someone starts showing the symptoms Dad has, the UTI is bad. No AL has the ability to care for a UTI that has gone this far. I am going to be blunt, UTIs can kill. More so in men than women my SIL was told when her Dad passed from a UTI.
Your Dad now needs antibiotics by IV and that can only be done in a hospital. Make sure a culture is done to find the right antibiotic to use against the bacteria he has. He may be in the hospital for a few days and then Rehab recommended to get his strength back. After that its trying to prevent them. My Mom was on cranberry tablets and a probiotic daily. In the year before she passed, she never had another UTI. Dad should be on a probiotic while getting antibiotics. Yeast infections can occur. Alva swears by D-Mannose. The Doctor at the facility can prescribe any of these for Dad. He needs to drink lots of water. He needs to void completely. If he is having problems going, he needs to see a Urologist.
Will you be able to live with yourself if he were to die because he didn't get medical help in time?
Call 911 and have him transported. Once there and you find out exactly what is going on and what his prognosis is, you can then decide whether or not you want to bring hospice on board.
If his prognosis isn't good, you can have him transferred to a hospice home,(which is covered 100% under his Medicare)where he will be kept comfortable until he dies. Keep in mind though that if he doesn't die within a week, he will be charged daily to stay there. But it would be worth it as most hospice homes are quite beautiful and peaceful and the care is usually topnotch.
I wish you and your dad the very best.