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?
You know him best & have already flagged the problems in the hospital setting. Being in an unfamiliar place mixed with anatheasia causes more confusion which often leads to a cascade of events: not taking pain pills, not eating or drinking, pulling out IV fluids & catheter, dyhydration, UTIs, falls, bruises, even fractures or head injury.
Many dementia patients I meet post hip surgery (so quite different) are too confused to eat, drink, keep IV fluid cannula in. It's very individual who will recover & who will deteriorate. Some require huge support from family - staying night & day if need be in shifts & do recover but often not back to their 'before'.
Would the hospital try to discharge your Dad home if rehab is not a viable option? I imagine he would have to be transferred directly to a SNF where he may become even more confused or even agressive.
Yes he probably needs the surgery. But can it be done? And what burden to him? And what burden to you?
The prognosis is crucial. If this cancer will not kill him, and he is generally well and likely to live for a long time, then not doing the surgery will severely impact on his quality of life for a sustained period. His hygiene is already poor, he is combative - what kind of condition is he going to be in when you add the complications of not being able to retain saliva, food or drink?
You are right to take your father's wishes into account; especially as he has undergone this procedure twice in the past, which means that his wishes are rooted in experience and to that extent well-founded. What's changed is that he is not able to understand the consequences of refusing the surgery now.
Is there anybody he does communicate with well, and trusts? The ideal would be to explain the problem better and win his agreement. I'd keep trying for that before you turn to drastic measures. I don't know if anybody has talked about the PRE-operative period: it might be an idea to have your father admitted to a memory care unit in advance so that everything possible can be done to stabilise him mentally and improve his physical state before the surgery.
You do also have the option of complying with his known, originally well-founded wants, but the consequences of doing that could be terrible for him and possibly very long-term - hard to align that with his best interests.
I should worry less about the detail of how the surgery and recovery would be handled. There are ways. They're not nice to think about, but they work and they will be carried out in the safest and least traumatic way possible by people who know what they're doing.
You have the impossible bit: deciding what to do when all of the options look unacceptable. Have your father's doctors given you any idea of how long you have to think this through?
Your father has more severe problems than skin cancer. You are correct that, without proper hygiene, the wound will not get cleaned and then what? Drug him again because he's septic and has to go into the hospital?
"I know he wants the least medical intervention as possible." That's what would guide me in this difficult decision. Respect his wishes.
Yes, the surgeon was very lacking in a plan for post op care and seemed unconcerned about his lack of hygiene or living situation.
Are you presently able to deal with the fact that your father is becoming more and more and more vulnerable, and that you or someone else will soon need to take charge of hi and become responsible for being sure that he is safe, as comfortable as possible and that his basic needs are being met?
Here’s the reason for my asking- you (and all of us who are caregivers) have known someone and (loved, tolerated, supported, helped, etc.) them for a period of time that has included ups and downs.
You have conservatorship, and you are aware of some important facts that are currently involved in your father’s care.
Your situation with managing his care is complicated/compromised by the fact that you live an inconvenient distance from him, and although you keep up to date with his status, and get the best possible services to him, you have become aware that there are some issues that don’t have an immediately discernible solution.
So the question- have you reached the point at which you are willing/able to consider the fact that his attitudes and opinions regarding his day to day life can no longer be considered as important as his safety, comfort and actual welfare? Then, are you comfortable with developing the awareness that you are now the “parent” and he has become the “child”?
With “no ability to comprehend”, and I absolutely take your word for this, it would seem that your father would fall into the hardest type health management category of all. You will need to consider all of the ugly unpleasant choices that face him, actually make a list of them, and prioritize them in order of the least awful or most likely to be achievable choices first.
Then, what is his most desperate need, and how can it be achieved? Would you consider administering a sedative in food? Would you consider hiring a large powerful person who could physically intimidate him to bathe?
How aware is the surgeon of his mental status? Do you have a document describing a diagnosis of dementia? If not, can you arrange to have an assessment done of his status by a geriatric trained psychiatrist, psychologist, MSW?
I have been a part or full time caregiver of several dearly loved relatives during my entire, decades long life. I am amazed at the progress the field of psychopharmacology has made in increasing the comfort of the elderly who deal daily with the torment of a broken brain. No more “drugged off his butt”, but perhaps more manageable, comfortable, peaceful.
Over the years I’ve become far too aware of being in the “sick to my stomach......overwhelmed” place, and I feel your anguish come off the paper as I read.
If your dad were mine, I’d seek a resource for some behavioral intervention FIRST. His physical needs are so numerous, and he’s constantly working against himself with his management issues. The head injury, the dementia, personality, habit.....if his caregivers aren’t able to manage him, and his behaviors will render him too difficult for many types of residential care, then isn’t it worth considering to give behavior intervention a chance as his best shot? Try hard to consider shifting your thinking from “things that won’t work” to “things that can be tried”.
Please get a list together for yourself containing ways for you to comfort and encourage and support yourself as well. You deserve it.
You're dad was clear prior to the onset of dementia that he doesn't want anything to do with doctor's. Were it not for the dementia would he agree to this procedure?
Although he's incapable of making this decision on his own, his wants and needs should still be considered. If it comes down to drugging him in order to get him this surgery step back a bit and examine if it's really worth it. Giving someone a tranquilizer in order to get that person to do what we think is best for them strips that person of their dignity and autonomy and despite dementia we're all entitled to dignity and autonomy especially when we're unable to express ourselves.
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.
This is a tough situation. Sorry you are going through it,
I would gently suggest to not criticize someone until you know all the facts.
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.
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.
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?
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.
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?
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!
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.