Follow
Share

He doesn’t like it when they have to talk louder so the other 11 residents need to hear them. He is not the only one there. He is not accepting this is where he is going to live. I went around with him last week. He is all better and he can take care of himself. It was just another day that was all about what he wants. Anyway I had sent a message to the doctor about his depression to see if we should try something else. Well the social worker brought up palliative care. She explained it to me and I told my husband about it. Then the nurse called me asking about what they want them to do. Also dnr. I asked her what does the doctor think. She said he cannot comment. I get that I just want to find out medically where he is. I told my husband and he said well your the medical person. I am like this is not my decision. It brought me back to when I was taking care of my mil 24/7 and there were frustrations for me and no one helping. We had a family meeting and my bil was the one who backed me up. I feel like he is putting his head in the sand and his brothers just don’t care what happens to him. Actually I don’t think my husband does either. I feel like now he is at AL that’s it. I understand I care too much. The man was a selfish jerk all his life but I still care, ok that’s a vent. I just wanted some suggestions on palliative care and if anyone has experience with it. Thank you all

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I get how you feel obligated to step up, especially if you have been helping all along. It sounds like you are the dependable person that everyone trusts. You probably already know this, but, I would decide if I wanted to volunteer for what is likely to be a very stressful and exhausting experience in managing the care of your FIL. Because, it sounds like he's not going to be compliant. Not his fault, he just has a damaged brain with the dementia and trying to convince him, explain things, get him to understand......it's not going to happen, so, you'll end up having to spend lots of time managing his care. And, you won't likely get any help. Is it feasible to relinquish this job to DH or your BIL? What about letting the county appoint him a Guardian? I might discuss it with the social worker. I'd consult with an attorney to get the options and then decide. You know what you can live with.

If you decide to hang in there, I'd discuss things with his doctor and have an evaluation to determine if he's able to make his own decisions. And, if he is in the right place for the level of care he needs. Often, an AL will not be able to continue his care for long. He may need a Memory Care facility or nursing home, which is another issue to contend with.

If the doctors are not going to operate, that's it. That's their decision. I'd figure an answer that will satisfy FIL. It's on the calendar, doctor is out of town, waiting on insurance approval, etc. He won't remember and eventually, he'll forget.

You might discuss Palliative Care with an agency that handles it. It sounds like the social worker is familiar with it. Some Hospices provide it as well. I read a lot about it when my LO got dementia. Dementia is a terminal disease. Palliative can really be anything you want, with the goal of keeping the patient as comfortable as possible, but, they can still receive antibiotics and even have surgical procedures, if their comfort would be helped. What it cut back on were so many tests and screenings for things for like cancer, which we would not treat anyway.
Helpful Answer (1)
Report

My husband is doing the part of financial and he we make sure he has special drinks and his own diapers. He does go check his computer. He just doesn’t want to really engage with him because he isn’t going to remember anything. He is actually not ready for palliative care at this time. He is angry that he wants to live on his own and he will not accept he can’t. He still wants knee replacement but his pcp said no way. I have an appointment with the orthopedic doctor he said he will only believe it from a doctor. The thing is is has come from a doctor. The pcp suggests a cortisone shot. I said why don’t we go less invasive. But his knees are worse than anyone. He isn’t going to remember what this doctor says. But thank you all for your support
Helpful Answer (1)
Report

Wait a darn minute here. Just back up a minute. Not to be rude, but was your husband a child bride? Is he, like, 11 years old now? Why have YOU been responsible for the care and maintenance of HIS parents? Why do you have to deal with his do-nothing and unsupportive family? He has dusted off his hands and told you that YOU are responsible for HiS dad’s medical care and decisions? How convenient for him! I mean, I get that you are a kind and caring person, but enough is enough. Disembark this runaway train at the next station. Inform him and his family that you are done. Put any paperwork you have for FIL’s care in file folders after you make copies for his family. Write letter to the doctors and facility informing them that any further decisions on his care will be made by your husband (phone and address included) and his family (numbers and addresses also included) and as of August 1,2019 you are no longer responsible and not to be called or involved in any further decisions. Let them deal with their unhappy father and his rude ‘tude. Not your monkeys. Not your circus.
Helpful Answer (3)
Report
Staffbull18 Jul 23, 2019
Well my husband is primary poa but I have always done the insurance and medical maintenance. He does do his financial and diapers and special drinks. He just doesn’t want to really engage with him that much. He said he won’t remember anyway. This man was not very nice to his kids. My husband would never abandon him. Quick update my fil is not ready for palliative care yet
(0)
Report
See 1 more reply
Why does he need palliative care?

http://www.holyredeemer.com/Main/Palliative-Care.aspx

I would ask to talk to the provider. Have him evaluated. You don't have to except the service. But by evaluating you will get an idea of what is involved. A heads up though, if FIL is paying xtra for certain care and Palliative takes over some of that care, then the AL should not be charging Dad. Medicare will be paying for it.

I now see why you end up worrying about FIL. The "boys" allow u to make the decisions. So, make this one. You may want to tell them though, this is their Dad. One of the "boys" needs to make the decisions. You have your Mom.

Your FIL is in an AL. He has Dementia. The staff should be trained to handle him. He may never except where he lives. You cannot reason with them. Being self centered is part of the desease. He was a pain before he will be after, maybe even more so.

My Mom gave all her life. When I sent her to DC a bus came and picked her up and dropped her off. First day she came home and said I had to drive her. I said no, she was going by bus. Taking her was an 18 mile round trip. 36 miles a day 3x a week. My DH would have done that. No I told him, in the time I drove her I could have a shower and we could get out for a while. If I took her I would have to get up before her to get ready. That would be like 6am in the morning. Maybe it sounds selfish, but in my family its always been me doing. When I cared for Mom in my home it was in my time. If something, like the bus, makes my life easier I am going to do it.

Really, you need to get the boys to take on Dads care. You cared for their Mom now yours. They need to do what has to be done for Dad.

I believe in what goes around comes around. If ur FIL was different when the boys were younger than their attitudes would be different. But its time for them to come up to the plate.
Helpful Answer (2)
Report

Spent my career as a nurse, and when palliative care came in I was so relieved. But here's the thing. If your FIL is not COMPLETELY demented, then this is his choice. Palliative care is all about QUALITY of life versus QUANTITY in terms of time. It is not about CURING, but rather about comfort. So that many things are not treated per se. But this is your FIL choice, not yours, if he is able to make it, and if he is not able to make this choice his POA for health care makes it for him. You describe him as depressed and angry. You need to find out what he is so angry about, and likely saying "Do you want to keep being treated, or do you want us to make you comfortable until you die" won't right now go over real well, dependent on what he is feeling. I believe you should, whichever of you has POA for Health Care, speak with his doctor who should explain to your father the OPTIONS. Believe it or not that IS his job. He can best ask your dad, as an uninterested and uninvolved party what it is your Dad wants. Palliative care would give your Dad anything and everything for comfort but would not give him things working toward "cure". As we know, there isn't a great cure for aging out there yet. So we are down to this. Can your Dad make this decision? If yes, then he makes it. Or is he unable to make it? If so, then you make it. But whoever is making it needs palliative care explained to them before making the decision. I am wishing you every good luck. And this is your Husband's Dad. There is no stepping away from this decision. The last thing you need is to hear later that it was your decision and your fault, as this is not your Dad. It is his Dad. Don't let him drop his side of the load. It is sad that we don't all discuss this BEFORE the fact. But often people do not wish to do so. And do know that many depressions manifest as anger and meanness. The staff at AL will be only too aware of that, as they deal with it every day.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.

Ask a Question

Subscribe to
Our Newsletter