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 He kept taking off in Uber’s to return to his house intent on driving a car, even though his license had been revoked.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?
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.
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.
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.
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!
You have been granted Guardianship because the doctor(s) and the Court felt that he was/is unable to make rational, cognitive decisions on his own. For his safety and best welfare they granted you the responsibility to make these decisions for him keeping his safety and best interest in mind.
He eventually passed out, fell, was transported to the hospital and then they took care of a safe discharge to a facility.
We were lucky in that he is not causing trouble at the facility. I hope other people can advise you on strategies to handle that problem.
Since your LO is paranoid and totally noncompliant with his care, he may need some time in an inpatient psychiatric unit. Please get him in to see his doctor for an evaluation and maybe a psychiatric consult. His doctors can advise you on next steps in compliance with the law where you live.
I'm wondering if Spouse, who refuses to change his Depends daily and sits on them until they leak all over, could go to a psychiatric unit for such evaluation. He's totally VA covered; I've not yet talked with his PCP about getting him into a unit or a later step of placing him.
-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.
The folks who run my mother's memory care often advise using the excuse that the house has termites and needs to be tented as the way to get a reluctant LO out of the house. The LO has to be out of the house for a solid five days for a termite tenting, the house is full of deadly poison, so there's no sneaking back before that time is up, and by the end of that week, the LO tends to be settling in to the new surroundings a bit better.
Of course, no houses are actually being tented or filled with deadly poison, but I remember the director of the place saying they've "tented" more homes than you can imagine. If you live someplace where termites aren't a good excuse, try to come up with some other catastrophic excuse to get him out of the house. If you've chosen a facility, they should be able to work with you on a way to get him there.
Are you legally and financially responsible if he manages to get to his car, drives it and kills or maims someone? Do you have enough insurance to cover that eventuality?
Have you consulted a geriatric psychiatrist about medications that might ease the paranoia?
Sugar cravings can be due to mineral deficiencies. Low zinc, chromium, calcium and magnesium can cause sugar cravings.
My reading suggests changing the diet to include protein at each meal and include more beans and legumes. Also, more hydration which is a battle for most seniors. What does your dad like to drink besides sugary drinks? I often mix half lemonade and water, also I give my Mom soup for lunch
Natural sugars in fruits especially berries is helpful.
It also sounds like your dad is depressed, which can be caused by too much sugar. Also, does anyone have meals with your dad?
Can you or siblings join dad for dinner or lunch several times a week? Do the caregivers eat with him? Eating alone can be very depressing .
When medical issues are dealt with, you may see changes in your dad. He may once again want to walk the beach. I suggest that someone walk with him.
Hopefully, my rambling thoughts will help you and your dad.
Typical caregivers can't dispense medication. They can remind, suggest, point it out, etc - best if in a locked and timed dispenser. In his case, there is resistance to taking them. Aides who are familiar with dementia should know how to coax someone to take meds/do things they are resistant to. Somehow make it THEIR decision. The same issue will likely happen in MC too.
Them allowing him to eat and even providing the ice cream bars is a disgrace! Sure, you want to keep him happy, but it isn't good for his overall health! Not getting medication, overdoing the sugar - yikes! My mother LOVES the ice cream bars they have at MC. She eats most of the food, but managed to gain 20 lbs in the first year (she was already overweight) from that and sitting too much.
Forcing a move - despite what others say/think, POAs are insufficient for making someone move, but you have guardianship. Obviously you have the "power" to make the move happen, but it is the actual moving that is the issue. He is going to be aggressively resistant. He's refusing to move and there are limited ways to make that happen!
THAT puts a damper on things. Our mother was totally against considering moving anywhere, esp not AL (although it had been in her plans before dementia!) In her case, she managed to injure her leg, develop cellulitis, just prior to the move. After initial ER/treatment, YB drafted a letter, supposedly from 'Elder Services' at the hospital, telling her she either moves to a place we choose, or they will move her. My brothers were able to move her then (I stayed out of the actual move, just did all the prep work.) However, she was not a large aggressive younger man!
About calling ambulance:
IF he refuses to go with them, they are not likely going to force him. You could ask them first what they do in a situation like this, but EMTs wanted to take mom to ER after a stroke at MC recently. Nope. They called me to get okay to take her, but as I said, even if I agree, you are still taking her against her wishes! My last word was if YOU can talk her into going, fine, but no hospitalization. She refused. Even with dementia, they CAN'T force anyone to do what they are refusing.
Note from https://www.agingcare.com/articles/legally-force-move-to-assisted-living-155888.htm
"The legal system so respects each individual’s right to make decisions about their life that, if a cognitively impaired adult has moments of lucidity and can state that they want to remain at home, the judge will usually rule that they can do so and then order the appointed guardian to establish appropriate systems, such as in-home care and home modifications, to ensure their safety and wellbeing.
Why do the courts take this stance? Geffen explains it is in line with a 1999 U.S. Supreme Court decision that ruled unnecessary “institutionalization” of people with disabilities is a type of discrimination prohibited by the Americans with Disabilities Act (ADA). According to Geffen, this decision has become shorthand for the principle that institutionalization (which includes senior living settings like assisted living and nursing homes) should be a last resort for people who need long-term care services and supports."
I would suggest medication (Note: I am NOT a fan of medication, but sometimes it is a necessary evil!) Working with his docs may come up with something that works, to calm him down without doping him, but then you have the issue of him not taking his medications. I would have a long talk with the right docs about this! I've read others suggesting Baker Act, and see that it is a law in your state. Perhaps this can be used to get him into "detention", so they can work on getting the medication right, then move him from there to MC. He will likely have to continue taking medication(s) for this issue. Although it makes it hard on the resident and family, they have to protect their other residents and staff from those who are violent.
I would get any snacks out of the house. Lock in basement. Or in a chest in basement/room. Tell care workers no food is to be brought in, no exception! Even if they treat. Tell them you will hold them responsible when his blood sugars are sky hi and he goes into a diabetic coma. Or he's gained too much weight and cant have it.. You will dole it out. Or leave what he can have on counter, no more. They might think they are being nice to an old man, doing him a favor.
As for meds chat with doc and see if it can be crushed up in pudding, applesauce, smoothy or changed to liquid to hide better. They know about ways to hide meds. Maybe offer small snacks instead to keep him happy. If he demands more, money is tight. Big bill came in. Stores out due to covid. He ate it all yesterday. Whatever it takes. Smaller portion snacks might keep him happy and not complaining. If he demands ice cream get the kiddie cups. Get a cheap cabinet and keep it locked or in locked room/basement. Or the snack packs of small lunch chips.
Id talk to doc to see if meds can be changed to a liquid and hidden in food or what can be crushed. That way he never sees it. He sees pudding!!!yeah!
Id see if doc can get him some med where he's not so belligerent. Tell him/her that you and care givers can not handle these moods any more. Does he have depression? Depression can be turned inward or outward onto other people. It is very common in elderly.
Gold luck.
What is the most important thing for your dad to change? Can you focus on one topic and see if it can be fixed with your dad's cooperation. I would guess that his world is spinning out of his control with so many people wanting him to change what he has always done.
Sounds like the food is the main thing to address first. Perhaps consult a dietitian to work out some healthier options that will balance out the vitamin/mineral issues that are driving his sweet tooth.
We contracted with a Home Health service that would administer meds if needed, and cooked healthy meals they both liked. It took a few tries to get aids that Dad cooperated with. I left it up to my parents to decide which ones they would let into the house.
But in facility care (short term) what a change! She walked more as encouraged by the others, ate fruit & vegetables & enjoyed the meals! No pain reported & showered everyday.
The illnesses that cause the lack of insight are still there. I'm not sure why she changed in care - more staff? Power of a peer group? I have been told by her Doctor, if/when the balance tips too far into self-neglect - involuntary admission, guardianship application & facility care would be the next steps.
Sadly some people will not improve in care - prefering their own room to any company & staying depressed. Parkinson's has physical & mental problems - I believe depression is common. Dementia can be involved too.
But if it is time to move Dad (& it sounds like it is) may you be at peace with the decision. Hopefully he is one that will benefit from a regular diet, medication management & socialisation. I hope some of the replies have given you some ideas. Maybe you feel a little less alone hearing others stories?
I wish you all the best. Keep writing if it helps.