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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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.
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.
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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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!
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.
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.
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.