PaulaK Asked October 2012

Has anyone else been an advocate for a parent with dementia who wants minimal, or no medical intervention?

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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.

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joannes Nov 2012
In AZ there is also a form one gets from the STATE, that your father would fill out and sign, and then his MD would sign, that states, if help is called to the home: EMTs, Paremedics, ambulance etc, that he only wants comfort care and does not wish to be transported to the hospital for any reason. THIS is important, because without this, they are required to transport almost everyone, and once there, you are hooked into the treatment until the DNR and POA forms are submitted, so the pt. would get treated, placed in ICU etc, thus running up a bill until you could submit forms and pull life support. It's much harder to deal with pulling life support than it is to avoid getting to that point to start with. In AZ, this is an orange form and is to be kept on the refrigerator at all times, so those called, know where to look for it immediately. I do not remember what the form is called. I am sorry for that. It gave my father a lot of comfort to fill it out and know it's there, because in their case, my mother would want everything done to keep him alive and he is 90 and ready to go no matter what happens to him, since his dementia has gotten so much worse this year. I already have been given control of their living trust and both financial and health care powers of attorney because my Mom could not handle them at 87. I hope this info helps you.
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jeannegibbs Oct 2012
PaulaK, I think your best bet for finding a primary care doctor who will respect your father's wishes is to look for a geriatrician. My husband's geriatrician hasn't even suggested he consider a colonoscopy since he was diagnosed with dementia 9+ years ago, for example. Establishing a relationship now, while your dad is still lucid and can explain himself might be wise.

My husband was always in favor of doing everything possible to prevent premature death and prolong health -- until he developed dementia. Then issues of quality and quantity became a concern. He does not want his life prolonged. But he also does not want to suffer. He is DNR, and feels so strongly about it he had his defibrillator deactivated, but he would treat high blood pressure, because strokes are not often fatal but coupled with dementia a stroke could very seriously erode the quality of life remaining. Refusing all medications and all treatments might make for easier decisions. Being selective about which to accept and which to refuse is more challenging. But each person should have the right to make their own custom decisions.

To support your father in whatever decisions he makes, be sure you have health care power of attorney aka health care proxy and a hippa waiver at every health facility he uses. Also, when the time comes establish hospice care for him as soon as he is eligible as they are extremely good at advising about what is palliative and how to maintain comfort.

Best wishes to you both.
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sunflo2, My FIL was a double amputee (legs) and my MIL was in no way capable for caring for him. The family tried in home care, but MIL fought it terribly each hour the caregivers were present. Didn't want them to clean their house, didn't want them to grocery shop, prepare meals or feed FIL. We did not know that she suffered from vascular dementia at the time. We seriously thought she was just being her difficult self.

His sister removed FIL from the home and put him in a nursing home.

MIL continued to live there alone until dementia put her in danger. She did start fires in her home and luckily was not hurt. At that point it was a clear call.

Maybe you would be more comfortable waiting for it to develop into something you don't have any misgivings about doing? I know that we didn't have any misgivings - and neither did FIL's sister. But clearly, my MIL could have been injured or killed in a fire as we waited for that evidence.
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cmcwrinkl1 Oct 2012
My parents both wanted/want minimal medical care. My father passed away two years ago (cancer) but didn't have dementia. There were a number of health professionals who supported his decisions to refuse treatment. Some of my siblings argued with them about it, but while I would have made a different decision than he did, I supported his right to make those choices.

And now I am taking care of Mom and she does have some stroke-related dementia and we struggle with her doctor's urging to get mammograms, colonoscopy, even flu shots. I want to support her decisions even though they are not what I would do for myself. I feel I will be strong enough to do this (despite some "helpful" friends) if things get worse for her.

I can't offer any advice but I can say there are others coping with these same issues and making decisions similar to yours.
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sunflo2 Oct 2012
Thank you ladee for your insights. PaulaK - you are absolutely doing the right thing and it is wonderful that you have a trusting relationship.

I have a question for the group -- what happens (my mom has dementia with coherent and increasingly non-coherent days). I'm struggling with "forcing" her to have in home care, or AL care, etc. -- which she is refusing even though I know she isn't eating or taking care of herself as she once did. She is 89 and I see the deterioration but she "is ready" to join my father. She has little to know health issues other than weakening from not eating/not preparing meals and general self-induced lonliness (she refuses all friends calls, visits, outings). She has told me and family members many times she doesn't want to be forced to move or have outside care...I'm honoring her wishes but my friends tell me I should "go in and take charge". I don't want to as I know it will make her angry, unhappy, and defeated.
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Hi PaulaK,

I have done what you are considering doing.

I will spare you the details, but you should know that the people who support extending life at all costs will make themselves heard. In our case, the nursing home staff actually sabotaged the hospice orders and put my FIL into severe pain at one point.

All ended as well as it could when hospice intervened on my FIL's behalf and stopped the sabotage.

It was quite the challenge, but we were able to get him a pain free passing in the end, with the nursing home staff and residents helping us.

I am glad I fought the battle for him as it was what he would have wanted. I am not torn about it at all. But right after he passed, I was physically and mentally exhausted for weeks from the effort.
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ladee is absolutely correct! Hugs and prayers as you make this journey with your Dad. He is blessed to have you!
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ladee1 Oct 2012
Paula, I absolutely understand what you are saying.... and I don't see you giving in to any medical interventions when you know how your dad feels about this... and as time goes on... you will get stronger and stronger in saying NO.... and yes, there are Dr's out there that will respect his wishes....
I do want to point out there is a difference between a Living Will and a DNR... please check into that.... for his and your sake, before you need that information...
I am a paid caregiver, watching the family doing the 'crazy dance' around my charge, M, she is on hospice, and has MDS... has fought the long battle and is ready for what ever happens next... and the family, in my opinion, are more concerned with their own feelings than with her wishes.... all I can do, is encourage her to stand her ground.... I pray when her time comes they do not panic and call 911... she is tired, she is ready, and because I love her, her wishes matter to me....
So please continue to post here, or on other threads, get support to stay strong with his choices... he is still allowed his dignity,,, it isn't always about what others think, it's about you and him having honest conversations and his wishes being done.... you are going to do fine.... you will do what needs to be done.... you love him enough to HEAR him..... and to me, I totally agree with his wishes... I just pray someone is in my life , like you, to HEAR me at the end of my life... Modern medicine is wonderful, but not if it interferes with the natural order of things....
So please know you are supported, and try your best to not concern yourself with what 'others' think... what your dad has stated to you will always remain the final word.....That to me is the true meaning of LOVE....
Come back and let us know how you are, and how dad is.... we care, we are here for you.... prayers sent your way to remain steadfast in your dads wishes.... sending you lots of hugs....
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Yogibear Oct 2012
You might want to check into Healthcare Power of Attorney. That allows you to make medical decisions if the patient can no longer do so themselves. Also, my mom is the same way. She doesn't want to go to the doctors or take medication. She has been that way for at least 20 years with this decision. The only paperwork that I didn't get done was a Living Will. You might look into that as well. This paperwork give the doctors info as to your father, if he so chooses, not to have any type of life saving measures done if he is terminal or in a vegitative state. Medical staff will keep them comfortable but will not give them any life sustaining intervention. I got paperwor for myself off of my states Attorney Generals website. I am single and childless and I do not want my family to make decisions for myself when the time arises. This will make it easy on everyone that they needn't make any decisions. I made all of my decisions.
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