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My depressed and delusional husband (67) refuses to believe (or more kindly, "lacks insight") his diagnosis of Parkinson's dementia AND major depression with psychotic features. However, he is very smart, not suffering other cognitive problems, and most of the time can articulate his wishes. Since 2018 when he was first diagnosed with Parkinson's, he has refused treatment (from neurologists, psychiatrists, physical therapists). Why? His reasons, as I see it, are a complex combination of a lifelong resistance to medicine and newfound fears and delusions (for example, he insists he has no health insurance, owes thousands, and is being sued by medicare). I have a Med-POA. Since his new diagnosis of Parkinson's with dementia in March (which landed him a short stay in a geri-psych hospital) he's been on namenda, seroquil and anti-depressants. Thus far they seem to provide no relief of his depression and delusions. He's getting by--not well, but not in danger. (We don't live together, he's in independent living nearby with 3x meals and 2x per day aide drop-ins). I still hope we can find an effective medication for him. So here's the problem: We go to his psychiatrist, where my husband insists he doesn't want any increases or changes in medicine -- would prefer to be off them altogether. He doesn't like the way they make him feel, he says, and then argues that his problem is not in his head. (This is, again, delusional. He believes his body is failing systemically and doing things like "sweating excrement." Yes, we've ruled out physical ailments). So then the Dr. turns to me and says "Well, you're the MPOA, it's up to you to say yes to a change in his meds." What? But my husband's not in coma, he's sitting RIGHT THERE -- saying he doesn't want it. And his refusal is not completely illogical. He's battled depression his whole life and has never wanted to be on meds for it. Now he doesn't want anti-psychotics. Anyway, so I'm put in the terrible position of either (a) directing his meds against his wishes, (b) discussing, arguing, begging, and cajoling him to try news meds, or (c) letting him make his choices. On the one hand, I feel like I should just override his wishes and tell them to go ahead and change his meds. If my husband doesn't want to take them, that's his choice but at least I will have fulfilled the responsibility he conferred on me when we did our MPOAs years ago. On the other, he's capable of understanding why certain meds are advised and of articulating why he doesn't want them -- a test for competency that has led other Dr.'s to reject my attempts to override his wishes. Apparently competency is a fluid definition. Also, this is a gray area because, let's face it, different anti-psychotics may or may not help. It's not like I'm faced with a decision to give him surgery to save his life or keep him on a respirator. It's more like making a decision about giving chemotherapy to someone with advanced cancer. In the end, it comess down to a fundamental difference in the way my husband and I have always viewed life. I think it's worth saving at all costs and he doesn't. (When I went through a bout with cancer five years ago and was faced with an ambiguous choice about chemo, he suggested "don't do it". Good thing I DIDN'T listen to him). So what to do? We're seeing his psychiatrist this week. Change his meds in the hope of improving his state? Let him live with his delusions?

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I want to thank everyone who posted a response here. Many of you recognize the terrible difficulty of this situation and your empathic responses have given me much to think about (and something to read—Being Mortal—Just ordered it on Kindle). I can surely see in the different kinds of responses all the facets the dilemma. Others have offered practical advice -- most of which I've thought of but some new things (I never heard of. POLST, for example). As for Bronish, please recognize that this is a country with people of many faiths or no faith at all, and to use this forum to proselytize Christianity, unsolicited, is disrespectful to those differences. Save it for your church. Okay. That said, to update those who have taken the time to help me -- between me, my husband and the Dr., we compromised on a solution that included stopping the anti-psychotics (they were having no effect) and instead of trying a different one, focus for now on changes in his anti-depressants. It's not the route I would choose for myself, but it's the solution he'll accept right now-- not totally, but without outright refusal. I've also decided to bring in a new social worker into the mix, who will come by and assess his living situation first-hand. All these "solutions" just serve to remind me how elusive "solutions" are.
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Llamalover47 Jul 2021
mabelle2: Thank you for your update.
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Listen to your husband, he isn’t crazy. He isn’t harming anyone or himself, correct? What prompted the psych hospitalization/ wrong meds?
Ask for some anti anxiety meds for him, i bet you will see a huge difference with small doses 2-4 a times a day.
Research every medicine that any doctor suggest, talk with your husband about what you learned and give a recommendation, start with the least amount you can, don’t force anything and add one medicine at a time. Let him win, it is his life. If he goes on a medicine and tells you he doesn’t want to feel that way, listen intently. With dementia, at some point, you will have to make the med decisions but from what I think I understood from your comments, he seems capable. Hope you feel comfortable with whatever you decide, don’t feel rushed, do your research. Hugs to you.
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If your husband is in independent living, does he currently take the meds prescribed to him? Noncompliance could be the cause of no response to meds. Is it time for a new psychiatrist or TMS to better treat his severe depression that hasn't responded in the past? If he has not been declared incompetent to make his own decisions, then unless he listens to your advice, he'll continue to make his own decisions. Let the doctor make the recommendations & unless the psychiatrist declares him incompetent your husband will continue to make the decisions that he wants to make. Speak with your husband about the need for a better quality of life without depression & delusions. He may or may not listen or agree, but you've made your feelings known so that you won't have any regrets. Good luck! 🙏
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Imho, perhaps you should let the psychiatrist, which as you stated, your husband was resistant to the doctor's attempts to help him with rx's, prescribe different medication(s) as your husband's mental state is altered by delusion. I do understand that, to some extent, he is anti med, but you are the lucid minded individual.
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Mabelle2...
I stand with the answer provided by Musicismymuse. I'm not in favor of too many meds....the side effects can ruin your life and affect those around you in a negative manner. The answer to life and its challenges, as well as a calm and beautiful passing lie with our Lord and Creator, Jesus Christ. In a case such as Bipolar, meds may be helpful....but, with dementia, Parkinson, and other age-related issues, a firm foundation of faith in God Almighty is essential, Plus, proper nutrition is key to healing of these maladies. Our bodies are fearfully and wonderfully made by God, and if properly nourished, can and will destroy cancer, diabetes, dementia and even Alzheimers. Amazing but true!!
You and your husband need to listen learn and change your dietary lifestyle. I'm 66, healthy, strong, and lost my belly fat, just by following some of his suggestions! Again, amazing but true!!
So, 2 things: Come before Christ the Lord, ask Him for His forgiveness as all of us have broken His moral laws and are headed for Hell. He is just, perfect, and because of Christ's death on the cross, for us, He paid the Penalty for our transgressions, resurrected from the dead to ensure our Eternal destiny, and all you need to do is Repent of your sins, and ask Christ to save your souls from Hell! He will! It's wonderful! Read your Bible and pray to Him!
Your health will improve, and fear of death will be gone, because you know where you'll be spending eternity!! Forever in Heaven with Jesus, the Son of the Living God! Shalom! 💜🕊💜
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Certainly when your husband decided he didn't want to take meds throughout his life, he couldn't predict the situation he is in now. Situations change. He really can't make decisions now, and it is highly commendable that you want to consider his wishes, but in the end you do have to decide how to give him quality of life - which is a balancing act for sure!. I would look for a new Psychiatrist that won't embarrass and humiliate your husband, who also employs a Psych nurse, who may be more likely to help you make decisions which incorporate your husband's wishes. My mother had a Psych nurse at her nursing home who was def not a pill pusher, who helped me to adjust meds for behaviors and to keep them down to minimum dosing. She was very respectful and easy to work with. I had to make medical decisions for my mother who had vascular dementia, keeping her wishes in mind, which were very different than mine. Ask your primary care doctor for other Psychiatrist recommendations...perhaps even search for a Geriatric Psychiatrist, even though your husband is not old. They are often much more understanding. You can't do this alone - you just need the right kind of help. Keep strong and keep advocating for your husband!
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You are in a difficult position. You care. He doesn't see clearly.
Can you call his dr and share this with him ?
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I have two comments. First of all, he is making his bed by his behavior and doing what he does and does not do. You can't change him. So let him lie in the bed he has made for himself. If it blows up, tough....he had it coming to him. Second, if he is impacting your life so much and is making it miserable for you, why don't you place him in a facility. You do not deserve what you are getting.
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First of all I want to acknowledge and commend you on what a difficult task you have. And how courageous you seem to be in delivering a very emotional, medical, legally binding plan to your husband. I would suggest seeking legal medical counsel to know what all of your options are. When Dr’s speak to us they are detached and are coming from a position of cold facts, legally binding. In your instance, what I would be interested in knowing is what is the time gap in your husbands progressive disease (s). And what can you expect further, so you can best decide how to move forward.
I have Mom living with me and she is end stage COPD & CHF. The stress is unreal, and every day I have to remind myself I am privileged to see her through the end of her life.
I wish you the best in a very difficult life situation. ❤️❤️❤️❤️
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"So then the Dr. turns to me and says "Well, you're the MPOA, it's up to you to say yes to a change in his meds." 

Whenever I hear of a doctor making a blunt statement such as this one, I think of the joke (well, it's sort of a joke) that doctors think MD stands for "minor deity".

Hope you don't mind the levity. I know you are going through a rough time.
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gdaughter Jul 2021
except it's not MINOR, it's MAJOR:-)
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PLEASE TAKE HIM OFF THESE MEDICATIONS!!! LISTEN TO YOUR HUSBAND!

THEY GAVE THOSE TO MY SISTER AND IT WAS TERRIBLE! YOU SHOULD NOT GIVE THESE TO SOMEONE WITH DEMENTIA! MY SISTER STARTED HAVING TERRIBLE FALLS AND COULD NO LONGER SPEAK AFTER THEY PUT HER ON IT!!! THESE DRUGS ARE DANGEROUS!

YOUR HUSBAND KNOWS WHAT HE IS FEELING! YOU ARE MAKING A MISTAKE GOING AGAINST HIS WILL AND IT WILL HURT YOUR HUSBAND ...I'VE BEEN THERE!
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If his delusions are making your life difficult, then try the meds. My mother has the same disease....in the early phases when you're not sure what's going on, it's sheer hell. She was calling me in the middle of the night, accusing me of all kinds of crazy things, she wandered off twice and one time took a ride from a stranger, and one time got dropped off by a police officer who picked her up and brought her home. One time when in the car with me she became combative and grabbed the steering wheel. The wait to get her into a facility was excruciating. In her later years she began hoarding, so staying at her apartment or hiring a home health aide to keep an eye on her wasn't an option. I would bring her to sleep over my house quite often and she would keep me up all night. And none of this was part of her personality when she was younger. This disease is NOT.....I repeat it is NOT, like Alzheimers. These patients are very hard to handle. You do what is right for you and don't listen to anyone who is trying to judge you. Good luck.
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Although jbeez1000's reply is a long and difficult post to read, it is filled to the brim with the passion of one who has been on the front lines of just such a situation. It's a tough call, I know, but as someone who, because of religion, does not seek any kind of medical attention (nor did my mother, who passed peacefully at the age of 89 in 2016 at home), I well understand the opposing viewpoint. However, I firmly believe that it is the QUALITY of life that needs to be considered, not just the quantity.
Although you did what was right for you (the chemo), why do you not understand that what HE wants to do what is right for him? My mother had dementia, but after I changed her diet and took away ALL grains, her mood and health greatly improved. People don't die of Alzheimer's, they die WITH it. They can die of broken hearts, loneliness, malnutrition, dehydration, etc., even with the best care and meds. When it is my turn, I hope that I can just 'pop off' in the arms of my loved ones, not in some sterile, unfriendly hospital hooked up to wires and zonked out of my mind.
This way of dying that people regard as 'normal' is not normal at all and has only been around for a short while in comparison with natural death. My father had cancer and a brain tumor, and he had NO pain and no medication. At all. Again, he was at home and had just seen the last member of his family that he wanted to say goodbye to. And with my mother, I told her she had been a good person, and the best mother to my sister and me and that whenever she thought it was time to go, we would be OK. She died the next evening, after a beautiful day of viewing photographs and listening to hymns.
There will be many who will disagree adamantly with me, but there are, I know, many who will understand that, "Life is not measured by the number of breaths we take, but by the moments that take our breath away."
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Difficult decision...I would change meds.
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I'd be inclined to agree to a trial of different medications. I think it would be reasonable first to ask the psychiatrist 1. what effects he is expecting them to achieve; 2. by when; 3. whether there are any potential downsides you need to be aware of. Assuming you get sensible-sounding answers, go for it.

When it comes to addressing the issues with your husband, you won't be able to convince him about the insurance or the sweating excrement, as you realise. So acknowledge his feelings but don't argue the case. State that this is your responsibility and you have decided to agree to a time-limited trial with the aim of relieving the symptoms he is experiencing.

I understand your concern about his different approach and I very much respect your respect for it. You are right on the money ethically. But you're not aiming for a cure, you're aiming to improve his quality of life and conserve the intelligence that is such an important part of him. If the meds help, great; if not, you and he have lost nothing.

The thing is, his thinking-through process at the moment has such major flaws in it. Yes he is taking in the information, yes he is processing it; but there are too many false beliefs at play for him to be actually rational. And as you rightly - again - remember, that's what he gave you MPOA for: to make the rational decisions on his behalf. This isn't life at all costs, this is a calculated (and reversible) decision aiming to restore function.
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There isn't anything people can do about Parkinsons, and there are medications to help preserve function though they succumb to the disease anyway. So no matter what you all decide it doesn't matter...he's going to succumb to Parkinsons anyway. So do whatever makes him feel better, in my opinion. I mean if his psych doctor wants to load him up with meds and if that's what your husband wants, at this point what difference does it make. You aren't going to "save" him in all situations. Eventually you are going to have to consider hospice and they have their own litany of drugs.
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Maybe reframing your caretaking might help you with making decisions for your husband. If your husband was a small child, you would definitely do whatever it took to make him "better." You would make sure he took yucky tasting medication if he had a life threatening infection. You would make him do physical therapy if he had broken a leg so he could walk again. Why? Because you knew that these treatments were necessary - even if he didn't enjoy them. In your case, parts of your husband's thought processes are broken. He can't make those life enhancing decisions anymore. This is why you are the MPOA and need to use your decision making powers since his are "broken." Do what would enhance his life and listen to him about what side effects of his medications he doesn't enjoy. Many of those side effects can be addressed with his doctor and be lessened.
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You should definitely allow him to make his own decisions!
I believe way too many people are on way too many meds, especially the elderly.
You and your husband are different and think differently and meds can do more harm than good and you should let your husband make that choice himself, as it is his own body.
Im sure if the roles were reversed, you would want your husband to abide by your wishes.
You should also assure your husband that he dies in fact have Insurance to cover everything.
Believe me when I say that most Seniors are on a lot of meds they don't need to be on.
My 97 yr old Dad decided to stop all 12 of his meds 4 yrs ago and he always has good vital reports by his Nurse except she tells the Caregivers to get him to drink more fluids.
He does have an enlarged prostate that he was taking pills for so he did have to get catherized but at 97, you can't be getting up all day trying to make it to the bathroom to urinate and I was afraid his Caregivers wouldn't change him enough and wearing wet diapers he would end up with bad rashes.
In closing, let your husband do what he wants.
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Jbeez1000 Jul 2021
Amen..its so important you word it well. I'm trying to find a way to get coverage to properly be tampered if many meds myself. Prays please.
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When you accepted the role of MPOA, was it with the intention of making the best decisions you could for him or was it to honor his wishes whether you agreed or not?  I guess that's the big question.

The doctor is turning to you to make the decision because your husband has dementia and is delusional.
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My husband had LBD which is dementia with Parkinson’s hallucinations delusions depression
anxiety. It’s progressive aggressive
illness. The best thing you can do
is try to make him comfortable !!!
seroquel antidepressants articept patch and Ativan (when needed) helped a lot ! ! ! It didn’t stop or reverse progression but helped moods and behaviours !
also I would find a really nice MC where he would get the attention and care he needs and deserves.
good luck with all of it … you’re on your own with this cruel disease
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Jbeez1000 Jul 2021
In last stages of life I can see using these drugs. Otherwise absolutely not they do mire harm than good
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The decisions he is trying to make now are consistent with the views he has held as long as you've known him. He may be delusional, but it seems to me his views on meds reflect his long-held approach to life. I would respect that.

And I second the suggestion to read "Being Mortal."
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Your husband is suffering from mental illness, anosognosia (lack of insight) is part of the illness where the person does not recognize they are ill and refuses medication. You will get best help and advice from NAMI, look them up and call today.
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Jbeez1000 Jul 2021
Namount claim to medication matter but lack the facts that support the truth these meds are nothing but harming you and to get off them is promising you harder to tapper down slowly as needed off them than it it is even being on them especially once you've taken then over a two to six week period as everybody is different. I also have research so many years to find what was going on with my behaviors I wasn't seeing myself as mentally ill so I spent almost a decade to find a way to get off these pills been trying over 8 years and insurance company doesn't cover the type of drs that have correct and accurate knowledge as its word of mouth and even considered drugs perscribed fir any mental heath diagnose is going to be worse than being on any street street drug and can actually be harmful to to the point uts life threatening to be on them and people take their own lives as its torturing and misunderstood the drs are nit taught the real truth thats hidden on the research studies are only to be hidden within kick and key in the manufactory file system in order to get the fda approval. To use these meds on people. Its a very detailed epidemic thats needs to be exposed to the world as opueds have been these drugs are even as bad or worse than opieds are known to be. Imagine being tortured abd having no one to see whats happening as no way your told you can be tortured without visible evidence abd I swear from my own ongoing experience its very real its very ture its ruined my life and just yesterday I reached my lowest point trying to get the power treatment I need to taper safely off these meds I'm teaching my own Dr all thats involved and he actually is trying to learn from me he can't yet grib all involved but I suggest you look up a dr abd psychiatrist if you want to care for especially the elderly whats going on uf on these meds start with his video seriemies he is now 83 yrs old abd he was the needle in the haystack that my own psychiatrist confirmed ymthen info I told her I had found was hitting it right on the nose and that she actually said how sorry she was withholding the truth from me and the following mis I went to the clinic to see her but 10 min appt finding she had quit abd even moved out if state. She I think was feeling so pressured that I confronted this issue and gmhad actually hit exactly what I had been asking what was going on abd this known New Your phtchiatrust is known to teach thus info to the Healthcare system yet its still just not yet a known problem and glitch into the care if mental heath. Also look up medicating normal. A 2020 movie that you can watch over utybe I know and Netflix streaming on only certain dates and need I'm finding need purchase a ticket I see on a site but its all about reachout out from the eyes of the community world wide current people needing this issue to be told the truth of thus issue and there so many current documentaries of panels of the people who were truth life patients and drs who now are changing their mind on how they have perscribed these drugs. Go look into this site abd listing you too will be extremely shocked what the truth really is. I suffer so badly I am at the point I don't care what happens to me in a sick kind of way as if I'm to be asked to prolong my health situation to live longer but nit rec the help fir my mental health I'm not willing to prolong life as its nit worth its to see myself as Jana who once was just find turn into me who is so damaged and knowing ut even is killing me I'm glowing through this living gell and losing my personality isn't fun ir even acceptable survey nothing but miserably just knowing I'm seeing it happen. Take this pkease reader to heart fie your lived obes don't deserve to go through this no one should its ruined my life taken away every single friendship I had all the way to my family nit contacting me ir allowing me to be invited to any family functions due to the total change in my behaviors .
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Your HUsband doesn't have to be in a coma for the MPOA to take effect. He has to be incompetent. The doctor turning to you is a strong signal that he thinks your husband is no longer competent. So just remember as MPOA you are not required to make the RIGHT decision -- just he best decision under the circumstance. Putting his best interest first.
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It’s obvious he’s not capable of making well reasoned thought out decisions even if he's not in a coma. He gave you MPOA so that you could step in when that time comes and that time is here. If your doctor thinks a new medication change is appropriate then approve it. Of course he can always refuse to take it, but you changed it based on how his doctor feels it might help therapeutically.
If I had asked my dad if he wanted a certain medication he would have always said no but we added and discontinued meds as needed to help with his behavior and his depression and anxiety. At times he would refuse to take the meds…especially at the end years because he thought they were keeping him alive and he wanted to die. We couldn’t change his refusal but we knew we had done our best!
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Oh my gosh! What a predicament…

I am so very sorry that you are struggling with this situation. My mom recently died in a hospice house with end stage Parkinson’s disease and slight dementia. She was 95. She took Sinamet and was prescribed Seroquel towards the end of her life. While in hospice, she had Ativan when needed.

I cannot imagine how stressful this situation must be for you. I hope you don’t mind a brutally honest answer from me.

You know that your husband is delusional. You know that he has suffered with depression and has a neurological disorder. Parkinson’s disease in itself is brutal. It is a progressive disease without a cure. I wish that I could have taken this wretched disease away from my mom and I know that you wish the same thing for your husband, but no one can erase Parkinson’s disease from their loved one.

I seriously don’t feel like you have any other choice but to override your husband’s delusional thoughts and order the necessary meds for him. Yes, it’s trial and error. You know that what he is taking now isn’t working, so back to the drawing board. I hope the next drug cocktail will be applicable for his needs.

Best wishes to you and your husband. Keep us posted. We care.
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SuzanneFLORIDA Jul 2021
Totally agree. It is such a difficult disease because the behavior can go from delusional to lucid and back again and while we hope for the best, we know in our hearts that there's something "not quite right". Therefore, this answer is so true: You have no other choice but to override your husband's delusion and order the meds for him.

Think of it this way...if he was driving a car. On some days he did great. On other days, he could kill someone. Wouldn't you take the car away? Thus, his delusional thoughts do not help him or keep him safe and therefore you must consider the medications.
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Has his doctor said he is incompetent?
If he is not incompetent then in theory he can make his own decisions. It should be that he gets to make decisions until he is declared incompetent THEN your MPOA becomes effective. It should not be that you make a decision for him in this matter but he can make a decision for himself in another matter.
The Parkinson's can not be cured.
The Dementia can not be cured.
All that you can expect is that death will be delayed.
With some dementia is delay a good thing?
He has valid points as do you.

By the way side note here. If you do not have a POLST completed for him (POLST has different names in different states but it is MUCH more detailed than a DNR) Please get one and discuss it with him while you can, while he can. It does go over different "life extending, saving(?) measures" Since you and he seem to be on different sides of the same coin this will get his wishes down and save you from agonizing decisions that you probably do not want to make.
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Thanks for the feedback. Just writing the issue helped me clarify it - at least the difficulties he and I are facing.
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Deemick Jul 2021
Our family and our mom believe in minimal medication,too. But with paralysis after a stroke and progressing dementia it was a whole new ballgame! It took months of trial and error but she is now on minimal meds and not having outbursts of rage and hitting and kicking during care. I feel guilty giving her meds but WE have to deal with her and look after her and keep our sanity and health , too. The psychiatrist was very helpful in letting us try different things and finding something that worked well. We adjusted her dosage to the absolute minimum, so SHE could be still here with us, mentally , sometimes. And we can go down if she doesn't need as much, too. A good talking, working relationship is ideal. I am sure she is much happier not having the stress, delusions and rage, as we are. Still a bit of mood swings but very manageable - thank God! (respiradone)
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I suggest you read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande.

Perhaps you're treating the wrong issue. He doesn't want the medications, so what can be done to promote quality of life over quantity, which you seem to know is his wish?

Talk to him and his doctor about what can be done to enable him to maintain his current level of independence as much as possible. Perhaps it means moving to assisted living to ensure he doesn't become more of a fall risk.
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jeannegibbs Jul 2021
I concur with your reading suggestion. It helps put end-of-life matters in a whole new perspective.
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You will need to find him incompetent for you to override his decisions. See how your paperwork reads.

You don't live with him, so who is going to make sure he takes the meds. Not the aide unless she is a medtech or is an LPN. Aides are not allowed to administer medication. They are not medically trained. They can remind. They can't administer. Not even do a pill planner. Maybe thats why the Dr. said its your decision because he feels your husband is not competent to make his own.

"Parkinson's dementia AND major depression with psychotic features. However, he is very smart, not suffering other cognitive problems"

Is Parkinson's Dementia different from other Dementa's? To me what you describe here is a man who is not competent to make his own decisions. Being smart has nothing to do with Dementia. In my opinion, your husband needs more care than he is getting in independent living. He also needs meds.
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This sounds quite challenging.

I may not understand this properly, but when you have MPOA, doesn't that mean that the person is not competent if the doc is asking you to make the decisions?

Do you think he is really competent enough to make his own health care decisions? If so, then step aside and let him handle it. I wonder though since he's in AL because he needs some help and is not thinking at 100% anymore.

If he's always been anti-med, then I guess you do have to consider that. But was that anti-med mentality made with a clear mind? I am pretty anti-med and do not have any psych issues, etc.

Maybe a compromise would be to increase/change meds to for a pre-determined period of time to see if he improves? If not, back them down again?

Good luck.
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