First off, shout out to everyone here, I've been reading forum posts like a madman the last few nights and they really help me confirm that I did the right thing.
Some background info: I'm 27 and am supposed to live in NY. My dad was diagnosed with dementia about 3 years ago at 67 and lives in IL. He's physically very capable aside but has conditions like diabetes, kidney disease, etc. I moved to NY early last year after spending 2 years with them during the pandemic, and my mom died from a sudden stage 4 stomach cancer diagnosis last last year. I hired caregivers 7 days/week 4 hours a day who spoke his language and tried to slowly transition back to NY but he blew up at them one day when I was doing errands around town and he thought I left him again. I went with another agency making sure that communication would be very basic English only for 4 days/week 6 hours a day (to give him some space).
This is when his anxiety and anger got worse. Things go well when the caregiver is there but when he's alone, he'll complain to me that he's lonely etc, and on the cameras, he'll be angry that I've been gone for months (even though it was only a few days), that I left no money (he has 2k cash on him) and no food (plenty of meals in the fridge). He wasn't getting his meals and medicine properly on the caregiver off days and would do a lot of really weird things like rummage through the trash bin, store leftovers in the microwave, and worst of all, open the doors and leave the door unlocked.
So one day I suggested moving into like a private room apartment but there's other people to talk to and activities to attend, essentially ALF, and he told me he'd be so grateful if I did do that for him. We toured a bit and he was back and forth about it so I made the decision since I have POA. I reminded him for about 1.5 months until suddenly the week before he decides he doesn't want to move or need help and wants to stay home so that "the kids" can come visit (nobody ever visits him except me and the caregivers).
I consulted with the family friend who he seems to trust more than me and she suggested we use a fib that there will be construction and he has to relocate temporarily. That seemed to work until he actually moved last week. He was insistent about going home so we kept up with the construction story. I stayed with him for about 2 nights but I needed some proper sleep so I left him and at first it was ok and I visited him the next day, but now he's seemingly lucid and asking all the right questions. "What construction is there to do anyway? Why is it taking so long? Is there no defined end date? How does it make sense that the owner is not around to supervise the construction?" Yesterday he had me on the phone for 30 minutes going in circles about home and construction and how he had to go back. I had to end the call because I had enough and decided to limit contact for a few days. After consulting some family and his trusted friend, we decided to add in to the story that mom bought that unit when she was sick so that people could take care of both of them but I'm not sure it's working. I paired him up with a man who speaks his language for dinner so that he's less lonely, but if I'm not there to send him off, he doesn't follow the escort. Right now I'm in the camp of not contacting him or visiting him for a while. All the exhaustion and grief of mom has finally caught up to me the last two days, but I feel relieved and liberated knowing that there is a staff to care for him.
I feel sorry for him but is it bad to cut contact for a little bit? How else could I frame the story about him being there? He hasn't even been there for a week yet so I know he needs more time to adjust, but it's a lot listening to him wanting to go home on the phone and I want to clean break for a bit.
You have a right to a life. Your Dad had his life and now is facing a sad end, one that all of us fear for our families, for ourselves. There is loss upon loss for our elders, from sight to hearing, balance, continence, eventually the mid and all that makes us who we are. It is fearful and it is hard to observe. The hopelessness and helplessness makes us mourn continually. There is little to do but grieve, as this is WORTH the grieving. Little to do but try to make it as good as it can be made.
I am so sorry your Dad is going through this, and that YOU are standing witness to the diminishing day upon day. But you must not give up your own life to it. It does no one any honor to do so. You have my complete sympathy and my heart goes out to you.
Well, you've been through it and then some!
You did the absolute right thing for dad's care. No regrets, OK?
I'd give him a total break from talking to me--or vice versa. You could tell him you're going 'off the grid' for a couple weeks and simply refuse to take his phone calls. MAke sure that the MC facility CAN get in touch with you, in an emergency.
Then take that time to regroup and think.
A huge change such as this will take some time to acclimate to. Your dad will either make friends and thrive or he will not--you cannot hold his hand any more than you have.
This was a hard post to read. I am almost 67 and to hear someone referring to their 'aging parent' when I still feel pretty 'young'--it's a slap of reality, for sure.
Let dad have his time to grieve and time to learn what is 'new normal'. It will be OK.
And for the record, he WILL not make sense when he talks, and that will get worse. Arguing with a chair has about the same long term effect.
Hugs & good Luck.
MC is generally locked so there is no chance that he would wander off.
I would talk to his doctor about anti anxiety medication.
It might take a bit to get the right med or the right dose but I think it would help with his anxiety, frustration, worry.
Let his get used to relying on staff or other residents rather than you so you might want to let calls go to voicemail. Let the facility know so if there is an emergency they can contact you.
If your dad was a member of a group or church that had members that spoke his language you could ask about a volunteer that could come in and visit with him at least 1 time a week.
Cutting contact for a bit would be good for both of you. It will take him time to adjust. My mom adjusted pretty quickly, to which I was amazed. Still makes a snarky comment here and there but that's OK. You can call the nurses station every day or so to check on him.
Best of luck
I found this to be by far the hardest part of caregiving for several of members of my quirky but loving family, including my mother.
Your are making decisions for your father that MUST be based on his safety and health. You will encounter situations that will require you to choose between options that can’t yield happy comfortable results, but you will need to choose “the least of the worse” and take solace from the fact that there were NO good solutions to choose from.
I think it’s always a good thing when the AL or MC STAFF suggests gently that you stay away as he adjusts to being in his new surroundings, but apparently they didn’t, so I will.
He needs time to realize that the AL staff are there to help him, and that they are there, and for a while, you won’t be, at least as much.
Owing to some of his behaviors, as mentioned in your introductory statement, I’d suggest that you ask the social worker at the AL if there is a resident psychiatrist or psychologist who could do some assessment to clarify his current cognitive/psychological status, make some recommendations for managing his conduct, and potentially help you consider a medication that could ease his anxiety and reduce his tendency to be aggressive.
We had an excellent experience with a gently therapist quite early in my LO’s stay, and her help continued.
It is not only NOT BAD to back off, stop answering the constant phone calls, and stop worrying about the effect of how your managing his current conduct, but it may be in the long run, a big help to him, AND TO YOU.
Listening to him right now probably isn’t helping anyway. Spend a little more time taking good care of yourself, and thinking of yourself as “best possible caregiver”.
You may be surprised at some point to realize that while being his caregiver, you can still be a confident and self nurturing daughter too.
Congratulations on making the right decision to place your dad!
He will adjust in time. Continue with the path you’re taking. You seem to have a good head on your shoulders.
Caring for a parent is a difficult task. I wish you all the best. Be at peace knowing that you are a wonderful advocate for your father.