My dad lived with us for about year after his last stroke. He perceives no cognitive deficits and will not acknowledge any physical limitations. He kept taking off in Uber’s to return to his house intent on driving a car, even though his license had been revoked. I finally had to file for guardianship, as a last resort.

He has been living in his home with 24/7 care for going on two years, but is now refusing to let the caregivers manage his medications. He doesn’t believe he has Parkinson’s or dementia. As of late, he has been skipping doses and we are finding medicine stashed in piles around the house.

He craves sugar to the point where he wants to eat a 28oz container of pudding and several high sugary yogurts everyday for breakfast. I found out he has been having the caregiver bring him 3 ice cream sandwiches as a treat several times a week. He eats them all at once. He has gained almost 30lbs in 6 mo. His AC1 is climbing at an alarming rate.

I was worried about Covid before, but now am realizing the caregivers are really more babysitting than managing him. I absolutely do not fault them. I gave in to his crazy requests too when he lived with us just to avoid the rage.

In his current situation he just lays in bed watching tv most days. He isn’t going out even for a walk on the beach. He has no interest in interacting with any visitors, family or friends. The only pleasure he seems to have is food and now that his lab work has come back that is going to have to radically change.

I wanted my dad to be in the least restrictive environment possible, but it no longer makes sense to leave him in his home when he is not taking his medication properly, his diet is completely out of control, and he refusing to do anything that would make his life more pleasurable.

He is completely unreachable by anyone who tries to talk to him about making changes. That includes doctors, family members, friends and caregivers. He is only 73 years old, and surprisingly strong. He is totally paranoid. He will never willingly go to a memory care unit. I have a care manager. She says that in her 35 year career, she has had only one patient as difficult as my dad. How do I make the move when a therapeutic lie will not work?

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I am so sorry you are going through this. Unfortunately I had to wait for a significant physical decline and two hospitalizations before I could place my mother in a facility with memory care. But her overall behavior hasn’t changed. She doesn’t participate in any pleasurable activities, refuses to leave her room, is rude, swats at the staff, curses, and wants to go back home although she is completely dependent upon staff to bathe her, feed her, etc. she still won’t eat well and calls people to tell them she is being beaten, poisoned, and so on.

I guess the lesson I learned was that I was never going to improve my mother’s life - I was only going to be tasked with the very unpleasant and stressful job of keeping her safe. But if she wants to stay in her room, curse at people, eat poorly, refuse her medications and not comply with doctors request for elevating her legs, then I can’t change that. Her personality hasn’t changed in her dementia. I chose a lovely facility with all kinds of activities and views of the mountains and she’s still as miserable as she always was. The difference is the staff in memory care know how to deal with her behavior. I’ve been able to work with her doctor to get some medication for her anxiety and depression.

Good luck and keep us posted!
Helpful Answer (11)
Reply to Mepowers

When my Mother refused to even consider Memory Care, I waited until she fell and went to the hospital. The Doctor there said to transport her from the hospital directly to Memory Care. That worked !! Now I have 24/7 piece of mind that she is eating well and if she falls, someone will find her in two hours or less.
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Reply to LonelyOnlyChild
BurntCaregiver Oct 27, 2020
If she falls someone will find her in two hours or less? If you fell and needed an ambulance would you find it acceptable if they showed up in two hours or less? I wouldn't be comfortable with odds like that. Either your mom is paying or insurance is, huge money for her to be in a nursing home so the two hours or less promise should not be satisfactory.
You say that your Dad doesn't believe he has Dementia. Yet you have guardianship. So what are the facts here.
Has your Dad been diagnosed with dementia? Did your Dad fight the guardianship, have full representation under law, and you have now for some time acted as his guardian?
Has your father had full physical exam when he went into "paranoia"? Do you have a doctor for him, and a full diagnosis of dementia?
If so that is pretty much that. The way you move Dad is, as the old expression says, "Lock, Stock and Barrel". You choose the facility that will accept him and you call the ambulance service (not 911 but a call) and have the papers for admission ready, and you have Dad transported to his new home.
Sorry for all you are going through. You have taken on an unimaginably tough job.
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Reply to AlvaDeer
AmiRMP Oct 23, 2020
Thank you very much for your reply. Yes, my father has been diagnosed with dementia. Yes, we went through the whole court process and he had his own attorney representing him. I know what needs to be done. I have been just struggling with the how.
There is a medical term for people who don't recognize their illness: "anosognosia", when someone is unaware of their own mental health condition or that they can't perceive their condition accurately.

Please be aware that even if you were able to trick him into a MC facility, he may act out to the point where the can be kicked out. Make sure you understand the policies and abilities of whatever facilities you are considering for him. Ask them for ideas on how they would get him there, as they have seen it all.

"...he is refusing to do anything that would make his life more pleasurable". Pleasurable is a relative thing now. I had this same hope/expectation for my MIL when I worked for a year and half to solve her financial and aging care problems and get her into a wonderful, small facility while on Medicaid. She got there and refused to get out of bed, not even for meals. That was in 2017 and she still won't get out of bed. Now she can't because all her leg muscles have atrophied and she's too heavy. It is what it is. I hope you/your family are not footing the bill for his in-home care.

I would maybe work through a caregiving agency and make sure they send people who know to not feed him foods that add to his problems. The caregivers need to make sure he is taking his meds -- watching him put it in his mouth and swallow it.

In the end you will only be able to do what you are able to do and that will be morally and ethically acceptable. Your father's paranoia may be part of his Parkinsons, (Lewy Body Syndrome). It's a ton of daily management, and I can only imagine your stress (and many on this forum have lived through it). I wish you success in carrying out a care plan that works for him and you both.
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Reply to Geaton777
AmiRMP Oct 23, 2020
I had really not thought about his behavior getting him kicked out. I really appreciate you raising that issue. In the dozens of conversations I had with the facility that has never come up. I certainly need to investigate how that scenario would play out. Thank you very much for your thoughtful reply. You have certainly given me some things to think about.
How heartbreaking for you and for him.

In your situation I’d opt for medication. My LO was EXTREMELY DIFFICULT, and as it happened there was a truly amazing psychiatric practice associated with the MC unit. LO had already been on an antidepressant, and with a few additions and adjustments in her medical regime, she began to improve, and before Covid was doing well. She still enjoys are distanced visits and accepts the care she’s receiving.

If our initial effort hadn’t been successful I would definitely have attempted to seek the opinion of another specialist, or a third, until I found something that helped.

You have done all the right things already, and I can’t think of a single thing else to try. I’d guess that you’re considering the fact that your dad might be over medicated during the process, and again, going from my own experience I’d be very clear that your goal would be a safe, supportive situation for him, so that you’d want the medication introduced in small doses to see what might actually work and what wouldn’t.

”Rage” and dangerously denying the welfare of yourself and those who are caring for you are serious symptoms and need to be dealt with as emergencies, and I’m sure you already know what I mean only too well.

Hoping that something can be found that can help you both through this very difficult transition.
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Reply to AnnReid

My sister and I wanted our father to go into an assisted living facility two years ago, but Dad refused and wanted to stay in his home as long as possible. He was put on hospice in September and had two falls at home that allowed us to convince Dad that he needed 24/7 care that he could not get at home by himself. He reluctantly agreed. Understand that at this point my father's life/existence is limited to sitting in a chair 24/7. He only gets out of the chair to sit on the porta-potty next to the chair. He eats in the chair, sleeps in the chair, watches tv in the chair... his mental decline has him believing that he is in his living room at home even though he is in a nursing facility. And he has the round the clock care that he needs, for however long he has left... My sister and I are sad that it had to come to this, but we are relieved knowing he is being fed, bathed, given his meds, etc... on a regular schedule.
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Reply to alcornell5

Your his guardian. You do what is in his best interest. If that means a Memory care unit, so be it. No lie, just do it. The problem I do see is if he gets aggressive. Memory care wil, not keep him.
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Reply to JoAnn29
AmiRMP Oct 23, 2020
Thanks so much for your reply. I know what needs to happen. I am really have been struggling with the actual how to get him there. We won’t be able to drive him. He likely will become aggressive , if not even violent in the car. I am looking into non-emergency medical transport and am hoping his neurologist might have a suggestion. I want to make the transition as smooth as possible. I really hadn’t considered the possibility of him being kicked out. Thank you for raising that issue.
My mother has been living with me for nearly a year. She also is in denial of her mental and physical health. She is mean and aggressive to the point she even tried to hit me the other day. I found a retirement community for her with independent living that also has AL and Nursing if needed. She 100% refuses to go. I FEEL sorry for her still. But her presence in my life is killing me. I had a stroke 2 months ago. Way too much stress for me. I can no longer suffer in her reality. She has decided to move and all of it seems crazy to me. But I do not wish to die by trying to keep her safe and sound. I am choosing the rout of letting her go. And letting her live with the consequences of her own actions. I was going to go the rout of having her declared incompetent and the court battle and then decided if it was that attempted to make her life easier as she grew older and as you stated,” wanting a more pleasurable life for your dad” then this was not the rout to be taken. What will be will be, it was never really in my control to have her have a better aging experience. They are sick and they don’t get it. Nothing you do will change their outcome. Thanks for being a good human and trying to do what’s best for your dad. He is young to be experiencing this and my heart goes out to you both. You have created some tough decisions for yourself. I wish you peace along the rout.
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Reply to AKATammy
cxmoody Oct 27, 2020
You lasted longer than me. I thought that I was going to lose my mind after 6 weeks of my mom living with us. I could barely function. EVERY boundary was met with an argument. I has issues with my own health. I couldn’t take the chance of getting worse from the stress. You are doing the right thing by letting go and letting your mom make her own decision. You are a person, too. I’m not saying this as eloquently as some here can, but your message touched me. Big hugs to you.
There may still be more of a working mind than he is given credit for. For now, you might try to control the food that's in his house.
-A caregiver should not be going out to get him ice cream sandwiches when the sugar levels (documented) are getting higher all the time. They can, however, prepare things that are a little healthier and have them ready in frig or hand them to him at meal time. Salads w/frozen grilled chicken, small meal containers prepared ahead of time/frozen and set out daily, soups frozen/set out certain days, etc. If he prefers to sit around, he will probably take the path of least resistance when hungry, so meal prep might help.
-He may need to adjust his sugar meds based on the recent test. Talk to dr about that. My parent took glipizide as needed, but when the test results showed increase in numbers - I added 1/2 pill to lunch time (every day) and have seen a difference. For snack, I have nuts and peanut butter pretzels that I dole out or popcorn and it seems to squash the hunger, (I'm a chocoholic, so I understand your dad's chocolate thing. Mini sized candies help.)
-How does he get a 28oz size of pudding? Order some dietetic puddings in the small cups. Same for the yogurt - look for brands with minimal sugars and maybe add granola or fruits to it. There are also some ice creams with minimal sugars. Do online grocery orders and pay attention to sugar coming into the house. Put extra supplies of these things in a special place he is unlikely to search to have more control over what he spots to eat when he's hungry.
-His meds can be ordered online in packets to be taken at certain times. Maybe an alarm on his phone to remind him it's time. Or the caregivers can hand him packet at appropriate time and watch him take the pills. It's very possible he gets them out, puts them down to do something and then forgets about it.
-Ask dr for phys/occ therapy to see if they can get him moving a little. It can't hurt to try.

You say he refuses to do things to make his life more pleasurable. Not entirely true. Eating, watching tv, laying around are probably his pleasures now. So, if there's anyway to control the eating/what is available to eat, it may help him.

At some point, his brain is not going to be even what it is now and a move might be more doable with the therapeutic lie. Since you already have caregivers helping him, have a chat with them about what is NOT working right now and give it another shot to try a better way. It can't hurt.
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Reply to my2cents

When I read this two thing came to mind. 1. He is still somewhat there and is choosing this lifestyle to hopefully kill him before he loses all his memory. (because of the mass quantity of sugary foods). 2. He has lost judgement and reasoning cognitive abilities. So his decisions make sense to him. Either way he needs help. He might fight you because he is depressed. The lack of interest with visitors, lack of taking care of yourself and gaining weight are all signs of depression. When my mom was going through this I came right out and asked her why she eats like crap, she also gained 20 pounds. She said she doesn't want to be an old lady. I said who does!! lol she started to cry and I let her. What I'm trying to say is have a different talk with your dad. Come right out and ask him are you doing all this to yourself because you are trying to die? If he says yes then he needs to be seen by a doctor as soon as possible. If he says no then tell him if he keeps up this behavior he will be dead soon and explain to him his lab results. Sometimes we treat our parents as children because of their behavior but they still want to be part of the decision process so by doing this it makes them feel they are part of it. It worked for my mom. She chose to not see a doctor and not be put on meds for depression instead to accept that this was her new norm and she has to accept it. You may be able to get a social worker in to speak to him because rage can be frustration he is experiencing and sometimes they know how to handle it or can help you get him to a place like memory care facility. Good Luck
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Reply to Onlychildbutnot

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