I haven't written a Raising Parents post in a while so it feels like it's time to catch everyone up with the adventure that is caring for an elderly parent.
So, one of the things that have helped settle the father-in-law into this new lifestyle is DoorDash. Every Friday, he phones me to tell me what he would like for dinner then I log into the site and order it. Everyone is happy.
Until he wants something that isn't featured on DoorDash (looking at you, Olive Garden) or if his daughter is elbow deep in lukewarm refrigerator food and forgot to place the order. Or the unexpected pouting when we told him that we would be out of town so he had to ask the front desk to help him on that particular Friday.
We also played the "That's not the regular pizza place..." challenge. He had the front desk lady order him pizza months ago and then when I first ordered it, he said it was good but it wasn't the same. So eventually I asked the front desk where they ordered from, ordered from there and "It wasn't the same."
This is where I say we are regularly - and probably too frequently by now - rope-a-doped by the f-i-l. We forget that he forgets, ironically. We fall for it far too often to be this far into this adventure.
Also, he has certain words or phrases that he says that we don't know if he was trying to be funny, or thinks he's saying it right, or what is exactly happening. He's been doing it FOR YEARS so we can't blame dementia or stroke or UTI. "Happy Easter Bunny Eggs" is an annual favorite, for example.
Along that line, his current go-to meal is Enchiladas. Pretty straight forward, yes? Nope, I have to spell this for you phonetically: Inch-CHILL-lawd-EEEs. Emphasis always in the wrong places, thus the capitalization. This is perhaps, one of those "Someday we're going to miss this..." and Kevin and I are all "Will we, though?"
So, now I've mentioned the dementia. You'll remember that there was a big push to move him to a "more appropriate" facility a few months ago. Well, that came to a full-stop. Firstly, he declined to move the first time this was offered. So the State wasn't interested in pursuing it again. Yes, the case manager should have known this before bringing it to us so that was annoying. If WE wanted to move him, then it's legal proceedings and we're not doing that.
Secondly, the case manager was invited to no longer work there. This is a good change as she was in over her head. She had good intentions but it was a good decision. With his initial refusal and now changes in staffing, he's staying there for the duration, as we understand it. Most of the time he says he's fine there and expresses that he understands the situation; when this is specifically addressed.
As for his memory, we are at the point of having either the same or very similar conversations each time. We concentrate on either not pointing it out or purposefully asking questions we already know the answers to help facilitate conversations. As most dementia patients, he can tell you anything about decades ago but few accurate things about yesterday.
But he did call us at 4:00 in the morning because he saw he had a missed call from us. From the day before, before we brought him dinner. So, that's...fun.
He's mostly forgotten that we're the worst children who ever childrened. Now it's the worst version of Groundhog Day. The same stories, the same complaints. For example, he claims that they didn't give him his tylenol, etc. I went and checked with his nurse and she physically showed me the meds schedule on the computer . She said that the travel/sub nurses may forget, in which case she reported that she told him "Then get up and follow them to the desk and get it." I love that she gave him autonomy in the situation.
So, then, when we reported the above to him, I said "We don't want to yell at people if this is not a problem, or if you're just forgetting" and he demurred. Pink flag. Then Kevin suggested that he can make a note to track his Tylenol and then he knows if he got it or not. "I don't want to make a big deal or fuss..." RED flag. To which, I quietly said to Kevin "And now we're done talking about THAT."
It has gotten to where the staff recognizes us and even some of the residents, that's nice in a weird way. My suggestion is if/when you're in this situation: please make eye contact and greet the other residents. You might be the only non-staff person they talk to, even if it's just a smile.
Anyway, now that I've made you weepy...
I made him a photo album - because that is my lot in life - of his trucking days. Reportedly he shows it to everyone who will take a moment, which is both sweet and sad. It is said that it's good to have things like that around to not only remind him but to show the facility staff that the person was once Somebody in this life.
Then I posted the album on the social media and everyone thought he had passed. SIGH.
He has a cardiology appointment in a few weeks, which is required by Medicaid/Medicare. We tried very hard to NOT have to take him, as he ended up in the emergency room the last time he had an appointment. But alas, Kevin and I are going. Meanwhile, f-i-l has a list of questions for her, few of which pertain to Cardiology. He has it in his head (again) that the doctor is going to fix him. He's even added the comment that "she fixed my wife" so....yeah.
We have both spoken with and emailed the doctor's office to prepare them for the appointment. Kevin was emphatic that ANYTHING they say will a) be taken as gospel and b)be forgotten/misunderstood. He begged them to be careful and pragmatic with their conversations.
Through the local Council for Aging, we have an advocate now. She visits him monthly, just she and him so he has autonomy, and she checks with the facility then reports to me. It's been a relief to have a non-partisan view of the situation to help guide everyone through this. We didn't know that such a thing exists, they reached out to us and we were relieved and happy to accept. So, please ask if such a thing exists in your community if you are also raising parents.
Now today I received notification that I have to renew his Medicaid application. No, YOUR stress level just spiked to the moon. I'm sitting here in the sun, with the window open and the music playing, trying not to FREAK OUT that they'll find a reason to deny him. #thanksCheetoHitler
Which brings us to he has cycled back around to "working on getting back home." That sigh you just sighed? TIMES A BILLION for us. We know it's cyclical, we know it's the dementia, we know it's denial.
BUT STILL. C'mon.
It will be a year at the end of July and my mother-in-law's been gone for two years at the end of May. It was just Mother's Day. We also just passed her birthday. We were "prepared" for an emotional upheaval that this month would/could bring. We were not prepared with "I can do everything I need to here by myself, so why can't I come home?"
And, it is disheartening and frustrating that he can't remember what he had for dinner last night but he can fixate on those kinds of things.
The biggest issue we have is he won't give. He won't let us make accommodations for him, like a recliner or a radio. He won't participate in the group activities. He won't go to the dining room for meals. When asked why, the summary of his reason is "I'm not as bad as those losers, I don't like it so I'm not going to try." The denial is strong in him.
Which takes us back to the Medicaid application. If we were to lose our minds and bring him home again, Medicaid stops and we probably would NOT be eligible to re-apply and/or return to that facility. Certain people who are having big feelings about him being in a facility needs to remember that. (not us, sigh)
I imagine you're reading all this and you're shaking your head and you're wondering about if it's hyperbole or OMG that's so much. This is what it's like raising parents when they're in a facility. I don't think we had thoughts that once he was in a facility, it would be easier. But if we did, we would have been wrong.
