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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?

Anesthesia is very difficult for elders. Often these cancers can be extensive, and surgeries the same with removal of bone, and other problems. The surgeons cannot predict when this "hole" will occur, and as someone who has, as a nurse, dealt with people with about one half of a face left, I can tell you that they can become quite good at learning to eat and swallow past a "hole". Either way this is a very difficult decision. I personally would not have my father, given these circumstances, do this against his will. Nature will take its course either way you go.
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Darlin Oct 17, 2019
Thanks for your input AlvaDeer. I appreciate getting your nurses perspective, it’s very helpful and makes sense.
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Basal cell rarely kills people. It can spread - usually very, very slowly - and can destroy tissue and bone.

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.
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Darlin Oct 18, 2019
Thanks NYDaughterInLaw.
Yes, the surgeon was very lacking in a plan for post op care and seemed unconcerned about his lack of hygiene or living situation.
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May I ask you a question? If you have concerns of being uncomfortable about answering, PLEASE feel free to disregard what I’m going to ask you.
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.
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Darlin Oct 18, 2019
Hello and thank you for your suggestions. My dad has been diagnosed as mentally ill since the mid 1950’s. He is 6’3 and strong. The force it would take (and has taken) for medical treatment is extreme. He had sll the dementia diagnosis- that ws necessary for conservatorship to take place. He is now spent down enough for IHHS via Medi Cal. Perhaps when that gets going and if he can get daily caregivers he can be secretly medicated!!
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Very very hard. Even if you presented say, photos of a real person with this 'hole' could he choose? "This Dad? Or surgery?" Even if he DID agree, he may not on the day of surgery.

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?
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Darlin Oct 18, 2019
Bless your heart Beatty, you totally get it. Thank you just for understanding. 🙏🏼💕
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Update! The surgeon called again yesterday , after consulting with an expert and was advised to not undertake this surgery. Aside from my dad being against it--and he was clear about that-- she said it would likely disfigure him to the point of him not being able to eat, and that infection was too likely, as well as the trauma of putting him through it all.

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.
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DareDiffer Oct 23, 2019
Amen! I’m glad they got another opinion, it sounds like it really is the best option in his case.. As to hygiene issues they are used to a vast range of abilities or not - it’s a part of the job.

Good to hear all those involved helping your dad are kind and kind and caring as they should be.
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There is nothing like reading of a worse more heartbreaking situation to make someone else feel grateful...my eyes filled with tears as I read about your situation. Others have responded wisely...you are blessed with knowing of your dad's wishes and thoughts re medical care. So I would agree with those who think not about the surgery, but I would find the best hospice program and consult with them, if only to be in your back pocket if things progress to a point where their services would be a blessing. Sending hugs and prayers...
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Darlin Oct 19, 2019
Thank you, gdaughter, for your kind words, prayers and well wishes- it’s very appreciated. Sometimes it helps just to know others care. Hugs back at ya 💕
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I know you want what's best for your dad but sometimes doing nothing might be what's best.

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.
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If your father refuses surgery, what happens next with the cancer? Has it metastasised? What is his probable length of life? Have you talked to him about death, and his wishes for end of life? His quality of life doesn’t sound good, and perhaps bringing it an end is what he wants. Doctors sometimes talk about the obvious issue which is presenting, in this case the BCC. Widen the discussion to look at the bigger picture. My sympathy to you both in a difficult situation.
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Darlin Oct 17, 2019
Thanks for your response.my dad can’t coherently discuss anything, but I know he wants the least medical intervention as possible.
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I would respect his wishes. He wants no more cutting. He’s already experienced it and he doesn’t want any more.
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Darlin, I’m late seeing your question but will relate our experience with this. My dad doesn’t have dementia as yet, but does have a dermatologist and his referring surgeon pal. I’d love my dad to break up with both. My dad has has surgeries twice in his old age for skin cancers. They were both much as you describe, but one was further along and required a skin graft to repair. Both turned into long, painful, and frustrating recoveries for my dad. He simply doesn’t heal quickly or well like he did as a young man. He comes out battered and bruised, weakened and tired. For us as a family, we found it cruel. And yes, the docs paint the dire picture of all the bad that can happen with not doing surgery, but when we actually researched it, we found these cancers grow so slowly our dad will die of something else far sooner than this, he most likely wouldn’t even get to the further effects like the hole you describe. The docs don’t see the recovery part, it’s not their problem. Now that it’s finally behind us, twice, even our dad agrees that it was a mistake, and that was with a dad who thinks clearly and has god hygiene. I can’t imagine the recovery with your dad’s situation. Blessings to you in this as you make this decision, often there aren’t any right answers just the best we can do
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Icaretoo Oct 21, 2019
My siblings and I had much the same experience with our dad in his 90s that Daughterof1930 describes (I’m a daughter of a 1921). Everything she said was spot on! My dad had a strong respect for the medical establishment, a memory like a steel trap, and 6 stable, educated children helping him age gracefully in his own house. He ultimately decided to “break up with” (to use “Daughter’s” words) his dermatologist on his own because the cost benefit ratio was too out of whack. He was much happier after the break up! Majority of doctors don’t get how taxing surgery and aftercare are on the elderly. “Not my problem “ totally describes it!
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