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 He kept taking off in Uber’s to return to his house intent on driving a car, even though his license had been revoked.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?
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!
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.
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.
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.
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.
-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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