My 73-year-old Dad (who lives alone in southern Oregon; I live 8 hours away in northern CA) is newly diagnosed with likely fronto-temporal dementia, based on the results of significant cognitive testing by a neuropsychologist.
I would say Dad is in the mild to moderate stage of his disease, having both very clear and slightly more confused days. He is not yet having language trouble or any of the "hallmark" emotional blunting or socially inappropriate behavior ... so far, just faulty short-term memory, repetitive (obsessive) behaviors, trouble following multi-sentence instructions, and so on. He and I are, therefore, able to talk candidly about what is to come, and what form it may take.
Since my mother's death nearly 5 years ago, my Dad has been very clear that he has no interest in seeing doctors, taking medications, or undergoing procedures that might treat "risk factors" or lengthen his lifespan. To this end, he actively decided three years ago not to get a colonscopy or to accept pharmaceutical treatment for his moderately high cholesterol, mildly high blood sugar, etc. Haven't made up his mind on this score -- and not enjoying arguing with his GP on these topics -- my Dad stopped going to see the doctor.
I realize these may not be decisions other people would make, and therefore might not regard as "sound" -- but when he made them 3 years ago, my Dad told me that he had and why, and he was very clear and logical about his reasons. Since his choices were in keeping with opinions he had held most of his life, I did not (and do not) attribute them to the FTD diagnosed last week. Nor is he simply stubborn or resistant to being told what to do when it is something that affects the safety of others. For example, the neuropsychologist (to whom I dragged him for testing based on worsening short-term memory impairment over the last 6 months) told Dad he cannot drive safely anymore. Not only did he accept this absolutely and instantly, but he offered me the car (and gave me his keys) as I drove him home from the doctor's office, telling me, "I regret giving up my freedom, but I won't risk hurting a child."
I know many will disagree with me, but I absolutely respect my father's choice not to take medications or seek treatments to try to extend his life. In addition to stating these wishes clearly and coherently, he memorialized them in an advance directive some years ago, and though I have asked him occasionally since then if he wants to revisit that document to make any changes, he remains firm that he does not. The dementia diagnosis depresses us both, but does not change his mind.
My worry now is that I want to continue to respect my father's longstanding wishes and choices, and to advocate for him when he can no longer do so for himself. But with the dementia diagnosis, I am realizing that as time progresses, I will be left "alone" to advocate for a loved one who wants minimal medical intervention in his disease process, and would prefer to "go quickly" than to try to extend even what other people might consider to be "quality time." I am worried that I will find myself having to say "No" to doctors who want to follow what would normally qualify as routine or "best practices" for treating dementia patients ... and that I will feel pressured to agree to treatments or procedures that are counter to my father's wishes. I am, selfishly, worried about having caregivers and medical personnel thinking badly of me for not "fighting" for my Dad (when in fact, I believe that saying "No" to treatment WILL be fighting for what he wants).
And I am worried that supporting him in refusing treatments and medications might not prevent him from living just as long as he would otherwise, but simply hasten him into the "shadow" time faster -- and keep him there for longer.
I want to know if anyone else has struggled with this in a dementia diagnosis -- and if so, how you handled it? Were you able to find a primary care provider who understood and respected your loved one's "goals of care" that were not necessarily in line with doing everything possible to improve health and extend life?
I want my Dad to have any and all palliative care he needs, whenever he needs it. I do NOT want (or plan) to pressure him into taking statins, memory drugs, blood sugar meds, and so on, even though I understand that not doing so will undercut his overall health and speed the progression of his disease. I understand there will likely come a time down the road when antidepressants or antipsychotics may be necessary to keep him from being agitated, angry, or dangerous to caregivers, and I will, of course, consider those when the time calls for it ... but am reluctant otherwise to allow him just to get sucked along into the medical system.
Hoping someone out there has experience in this ... thanks for listening.