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?

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.
Helpful Answer (12)
Reply to Countrymouse

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.
Helpful Answer (11)
Reply to NeedHelpWithMom
SuzanneFLORIDA Jul 19, 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.
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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Reply to Harpcat

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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Reply to Grandma1954

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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Reply to MsRandall

Not sure that the meds he's on are helping. Have you seen a Movement Disorder Specialist? If you can, find something better for the psychosis. Even if you agreed to a change in meds will he take them? Do you know if he really is taking what has already been prescribed? And just because he's not in a coma doesn't mean he's competent to make these decisions now. If you're sure he's been taking the meds without good results do something else.
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Reply to vegaslady

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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Reply to MJ1929
jeannegibbs Jul 15, 2021
I concur with your reading suggestion. It helps put end-of-life matters in a whole new perspective.
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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Reply to Taarna

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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Reply to JoAnn29

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.
Helpful Answer (5)
Reply to LakeErie
Jbeez1000 Jul 15, 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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