I’m my father’s conservator. He lives alone with about 20 hours of caregiving. I live 9 hours away. He has dementia and mental health issues, and a large deep basel cell cancer on his face that is getting deep and close to the inner tissue of his cheek. His MD and a surgeon say he will have a hole, eventually, in his cheek where drool and food will escape and it will be extremely hard for him to eat. He’s 80 and otherwise physically pretty healthy and very mobile. Mentally he has no ability to comprehend what is going on, except to assert that he does not want surgery. He had the BCC excised twice in the past but has been adamant about not letting anyone cut on him again.
When I asked how on earth I would do this against his will, the doctor suggested giving him a sedative at home before driving him to the outpatient appointment— which is 2 hours from his home at a hospital.
My dad has not showered in 8 months, has terrible hygiene. Caregivers cannot get him to change clothes or bathe. He is very combative and mean when agitated. He would have to be drugged off his butt to get him to walk into a hospital. I don’t think he would even take a pill for me or anyone. ( He takes no meds at all, has alway distrusted doctors and is paranoid, thinking people are trying to kill him— and this was before dementia).
When he totaled his car 4 years ago and was in hospital with a head injury he had to be restrained and drugged and have a sitter 24/7.
I just don’t see how this surgery is possible. And if he did go in and get it done, how would he recouperate at home with his refusal to bathe? The surgeon said he could go to rehab for two weeks but they wouldn’t keep him if he doesn’t want to be there. So clearly that’s not an option.
I’m sick to my stomach about this and overwhelmed. What would you do?
Also concur on the idea that not everyone can go the AL/MC route. Too many immediately suggest placing people without considering that many can't afford the cost (even worse are those who say NH because people have to meet certain needs to be eligible for that - needing specialized nursing care, dementia isn't enough - and it is even more expensive than AL or MC! On top of that are those who say Medicaid will pay - not always the case there either!)
Although we didn't have to go the guardian/conservator route, I do understand that management of their care takes effort and sometimes a lot of work! Our mother is in MC (thankfully she can afford it) and although I have 2 brothers, all the financials, medical care, paperwork, contact, etc, goes through me. Some months are better than others, but it is still a lot of work!
Blessings to those who have to tackle all these things AND provide the hands-on care! For many reasons (esp any physical care) I can't care for her myself, even if we could hire help, but ensuring she is safe and cared for is something I can provide.
Hoping things go well for you, as best they can given all the issues.
She was very gracious in the reversal of what had been her original reaction, prognosis and plan (or lack there-of). I'm so thankful she consulted an expert. I am grateful that she and her staff and his regular MD, his caregivers and case worker, and the court investigator are all kind to him, caring and not grossed out by his hygiene issues. He does the best he can. I do the best I can.
We all need to understand that memory care facilities and assisted living are for people that have money- not very poor people. My dad will eventually be in a nursing home or mental hospital ( via Medi Cal)--but not until he is failing in other areas. There are a lot of people checking in on him. Being a conservator is not something one takes on lightly. There are a lot of hoops to jump through and checks and balances.
I thank everyone for their response and input. We're all in this together.
Good to hear all those involved helping your dad are kind and kind and caring as they should be.
Duggan B. can not be legally charged with neglect any more than they could charge me with neglect for his father. Just sayin.
OH-- btw--- he will need to be in a place where they can bathe him and change the bandage on his face--- and he may have to be restrained the first few nights to keep him from scratching it.
When I took him in for cataract surgery - also in his 80s and with moderate dementia - the doctor and I went over and over the process ahead of time and I managed the drops since Dad couldn't. The doctor talked to him just before surgery and still, after the procedure, he was surprised by it all, thinking he was just getting his eyes examined.
Drs found basel cancer cells on my dad's back. I knew he would not allow anyone to hurt him. Surgery was discussed, but, biospy first. I warned the dr before she attempted to numb the area for the biospy. He threw her across the room. All the medical personnel left the room. The doctor, then, came back with a cream that could be used. It's Imiquimod usp, 5%. It comes in small packets that are applied every weekday morning, no weekends. The cream worked by taking off layers of skin without pain. It has been used several times now.
Years later, after moving her to MC, another spot appeared on her cheek. The dermo doc suggested Mohs, which was how it was treated before, but when they said I couldn't be in the room with them, to ensure she was co-operative, they went with a "punch" biopsy instead. We did have to do it a second time, when the test results showed cells on the edge, but it was done in his office both times with just a local anesthetic. After care was handled by staff at the MC facility, but it was minimal. So far I have not seen any recurrence (2 years now?)
At her age, with dementia, I would not put her through the Mohs and told the doc that. I did want to try to nip it in the bud, so to speak, to at least delay any additional growth because of where it was on the upper cheek, about where her glasses would hit.
In your dad's case, getting him there, getting it done and treating it afterwards will be a monumental challenge. It does sound like he is on the cusp of getting facility care. You haven't indicated how long he has had dementia, what type it is or what stage he might be in. If he only has a few years left, I would focus on getting him into a facility and perhaps having at least one bath! Also, provided this is run of the mill (if there is such a thing!) dementia, not something like Lewy Body, would it be possible to get some anti-anxiety meds into him, even if the care-givers have to put it into his food? When mom had a UTI, we had to use this as she developed some serious sun-downing. Generally she is calm, fairly quiet, reads her paper, magazines, sales flyers, etc. With the UTI - off the rails! She only got the minimal dose (he might need a bit more), which was just enough to take the edge off. She was not doped up and it doesn't take time to build up in order to work. You should see results the first/every time, fairly quickly. This would be just to tone him down a bit, and perhaps make him a little more compliant with simple issues like a bath.
I would also have a frank discussion with these doctors. They clearly do not understand the whole dementia process. Gung-ho surgery away! Sure, dope someone up to come in, do the deed and then release him to himself, non-compliant? I would also be concerned about the fact that this has been 'excised' twice before - same place and same doctors? Why has it come back? Did they not do the job properly? None of mom's has reappeared.
I would also inquire about any alternative, less invasive treatments. I did find an NCBI review of the various treatments that are offered. Some have side effects, some have not been studied extensively enough to say how well the treatment works, but they have shown good results in many cases. If there is something they could offer that wouldn't require a lot of effort on his part/help from others, perhaps it could be considered (or seek second opinion.)
Focus on keeping him safe (and clean) first! We have to choose our battles!
By and large, I try to respect my dad's wishes unless they could harm someone else (like when we made him stop driving). He's also has mid-stage dementia and hasn't done even basic hygiene in years.
If you haven't already, press the doctor for an alternative (topical chemo, etc) that may keep the cancer from growing as aggressively.
Doctors can be incredibly obtuse about issues that the families of the demented elderly face. S/he clearly doesn't understand the degree to which your dad is resistant. Is there another doctor who could give a second opinion or at least be more realistic about options?
A month from now, a year from now, five years, ten years, what action could you regret?
My questions that needed answering using this technique are WAY more simple than one you're facing, but looking at this dilemma from this perspective may help you figure out what's right for your dad, and you.
If he no longer has the capacity to make medical decisions, then you can override her father's refusal to have the surgery, although getting his cooperation would still be preferable.
By the way, my mother is also very stubborn & very paranoid. The only time she agrees to bathe is if she's going to see a doctor, and she hasn't brushed her teeth in ages (even before going to the dentist). Even though more socialization would probably benefit her, I can't imagine most people would want to be near her because of her poor hygiene.
"I’m my father’s conservator." As her dad's conservator, do you understand that a doctor - probably doctors plural - already determined that he legally lacks the capacity to make his own decisions?
If he no longer has the capacity to make medical decisions, then she can override her father's refusal to have the surgery, although getting his cooperation would still be preferable.
I really would plot the "what happens if we do do this?" versus "what happens if we don't do this?" charts in as much detail as possible before deciding. Make the surgeon sit down and concentrate on the questions.
I would gently suggest to not criticize someone until you know all the facts.
This is a tough situation. Sorry you are going through it,
hating the pain and not taking pain meds?
fighting the staff to change his dressings?
trying to remove sutures or staples himself before wound is ready?
doctor or nurse having to do house call since he won't go to appointment?
possibility of eroding your dad's trust in you?
If you have a good plan in place to address these issues, go for it.
If you can't fathom how to manage the care after surgery, it might be time to admit that the time is coming near to "not do" anything except comfort measures. He might need a feeding tube inserted into his abdomen to get full nutrition if the cancer erodes a hole in his cheek. He is probably not comfortable with the cancer now and might be ok taking pain meds if explained these will help him to be more comfortable. There are skin patches that could be placed on his back - where he could not reach. He may allow massage - and somebody could also clean him at the same time. If this is more acceptable to you, talk with doctor about hospice services.