Okay, with everything in this world ACTUALLY on fire, I've not revisited or updated the situation with my father-in-law. Let's just say it's been a lot. Apologies in advance, this is novella in length.
We are currently one week into a two-week time-out from my father-in-law. What happened, you're wondering. Well, we are wondering a little bit too.
To tell this story, I have to go back to the late Fall. The last we spoke of this, we were considering transferring my f-i-l to another facility. It was supposed to be better suited for him and we were momentarily excited yet concerned.
He was evaluated and invited to move to that facility. When the offer was made to him by the Medicaid staff, he declined. He was happy where he was and didn't want to change. While that was absolutely fine with us, it wasn't as fine with the current and potential facility but that is a whole other story. (I think they were trying to fill quotas and felt "duped" when we didn't make him transfer) I told them both that "He's had a LOT of change over the past year, he gets to choose."
So...that's late October? Yes, I just checked my actual notes.
We girded up for the Holidays. This would be the first that he was in a facility and the second without my mother-in-law. This is what we did to try and ease through those two months:
- We visited and took him clam chowder and burgers once a week during the those months
- We decorated his room for the holidays
- The four of us spent two hours with him on Thanksgiving, with a homemade meal
- Christmas Eve we spent two hours with him with another homemade meal. AND PRESENTS
- Three days after Christmas we rode with him on public transportation to brunch/lunch/early dinner AND paid $85 for an absolute sh*t meal
- Sister-in-law has been taking him Christmas cookies since Thanksgiving. AND ALSO FOR THE NURSES
Imagine our surprise right after the New Year, Kevin discovered - when he asked the nurse a question - that Kevin needed to go talk with his dad again; because he has been very concerned about his money. But she can't get into specifics because he swore her to secrecy. And was asked to not speak with US, specifically.
Reluctantly he was finally told by the nurse - and later the social worker - that his dad doesn't trust us and wants control of his finances back. The staff couldn't tell us anything specific beyond that because again, he swore them to mther-effing secrecy AND THEY AGREED.
Kevin let the staff have it in a direct and firm way, not yelling, "He's your problem now" and expressed displeasure with Keeping Secrets from the Family like it's a game and dismissing that we have durable power of attorney.
His dad has occasionally fussed that he can't have his wallet at the facility because it's against the rules. The facility doesn't want any personal paperwork, etc. there that they may be liable for if something happened.
He has also fussed that he wanted his bank statements. We (I) have provided them, once was a print out from the website and they are all redacted statements. The delivery of said statements apparently was not done quickly enough, as in "I keep asking for these and no one will bring them to me" with a shake of his fist, clutching the statement that was just brought to him. Oh, and he didn't like the printed from the site statements. Excuse me, your highness.
Two separate, yet related things:
He will say, in justification, when asked why he needs the statements SO BADLY, he will answer "It's all that I've got!" which is heart-warming to the four adults who have been caring for him for the past two years.
We will slow roll requests sometimes - like the statements - because we are trying to curb demanding behavior and expectations that we'll all just drop what we're doing because he "needs" something. (i.e. cookies or snacks)
Continuing...
When he asked Kevin last, Kevin told him that as soon as the statement arrives, he will bring it down. IRONICALLY, he had one for him THAT NIGHT; not knowing he was getting ambushed. Although it did provide a prop to say WTAF to him.
Keep in mind that his dad doesn't understand ANY OF IT. Yet will argue with you about it like it's a life or death situation. As in "They give me $1 for an allowance." "No, it's $103.20 allowance, monthly" "NO, SHE SAID IT's $1" That kind of nonsense. He argued that his Medicare goes directly to the facility, Kevin said no, it goes into your account and Surely pays the facility." "NO SHE SAID THAT EVERYTHING GOES HERE". We are already well-attuned to steering out of this particular skid.
The crux of his current issue is that he suspects - or believes, depending on who you're talking to -that we are spending his money. To be clear, as soon as we hit the spend-down threshold for Medicaid, we stopped using his card. Everything he has needed or asked for has been paid by US. But it was implied by the social worker that he thinks we're using his money for our personal use. Hundreds of dollars we've spent of our own money (and we pay for his cell phone) AND this is not throwing shade at the siblings, they provide as well; just differently.
Because of the Power of Attorney, the facility has to ask our permission for everything. This is as simple as trimming his nails to as important as changing his meds. We have always said yes to anything he's asked or they have offered. We have provided everything in our power that he needs.
Perfectly timed example: he decided he wanted to go to Dennys. The facility told him that he couldn't go alone and that he needed a chaperone. The nurse phoned Kevin at work and he set it up when he went for a visit that same day. We took half of Saturday to take him to Dennys. Met him at the facility, the bus picked us up, etc. He was fine, happy even.
Fast forward five days and he's furious. He has it in his head that he can have his wallet and go anywhere he wants to because they said he could and they have a bus. Kevin spoke with the nurse (his favorite one) and she said that he CAN have his debit card but not his wallet and she said he could go on the bus. (she was wrong about this part. Thanks for that.)
Returning to the original conversation between Kevin and his dad. You can imagine that the conversation did not go well. Kevin was good by first asking "Is there something you want to talk about?" He was met with the shruggy, petulant "I don't know..." If it were me, I would have said "Fine, I'm going home then. I'm not playing this game" But Kevin said "Clearly you have something on your mind and they said to come ask you so what is it?"
In response, the f-il lost his temper about the debit card and the shopping and we won't let him do anything and wants to know where all his money has gone, etc.
Kevin explained for the eleventieth time that he can't have his wallet there, that we brought him the bank statement ("Not when I ASKED, I KEEP ASKING" was his response. If you just thought "You said that already..." YES, that is the point I wish to make. It's relentless sometimes) it's the fact that he doesn't remember/understand AND the fact that he's a total d*ck about it.
Kevin left in a "Whatever, bye Felicia" kind of way and left it at that. He phoned his brother and yelled to him about the situation for the entire 20 minute drive home. His brother was sympathetic and empathetic and horrified. He said he would go see him and take him the debit card. Kevin said he's done for right now with going out of his way to visit, take him dinner, and try to make him as comfortable as possible.
But wait, it gets WORSE.
The very NEXT NIGHT we had dinner at the godforsaken buffet for Nephew's birthday. We were already seated when Niece and Nephew arrived. They sat down and said they'd been to see Kevin's dad and boy, is he mad about the money and the bank statements, etc. Nephew said he just wouldn't stop. Because they didn't have context, they laughed it off as venting. I said "Well, that's been a thing and it's been really bad."
Kevin just went quiet. He didn't hardly speak for the remainder of dinner. Nephew also said that f-il was really happy about going to Dennys. Kevin replied "Well that isn't happening any f-ing time soon" (way to bring the mood down. lolsigh) The siblings heard this as well and were equally horrified and frustrated.
The next morning Kevin's dad phoned me and I didn't answer. I never miss a call from him, on purpose. He didn't leave a message nor did he call Kevin. He also has not called the siblings. Chances are he needs something. Or he's asking about laundry because we told the social worker that we (I) would no longer be doing his laundry.
AND THEN IT GOT EVEN WORSE:
The brother went and indeed let their dad have it. It sounds like he was direct but not angry. He said he made himself a list prior so he didn't lose track of what he wanted to say. He told him that he was wrong for talking about us and telling the staff to keep secrets from us. He told him he has no right to judge, question, or yell at us when all that we've done is to benefit him and make him comfortable. He said that his dad demurred and downplayed and denied. He said he'd have to talk to us. B-i-l also left it with a "I need a break, you need to think about this, and I'll see you when I see you."
AND THEN the next morning, his dad called Kevin and sheepishly asked what it would take for both of us to come talk to him. Kevin said he would go but he would ask me because "She's really upset with you, dad. You hurt her feelings. And mine." Kevin let me sleep in then after I was fully awake, he told him what had been asked. He gave me the option to stay home but I went because he specifically asked for both of us.
We arrived and he had his serious - think: imperious - attitude so immediately we knew that nothing had changed. Kevin sat down and I stood next to him. F-i-l hedged at first then he began with "I'm sorry that there has been a misunderstanding..." Kevin stopped him with "There's been no misunderstanding. You've been talking to everyone about us and told the staff that they couldn't talk to us anymore. You did not talk TO us." F-il vehemently denied it. Still.
We talked about how it's not a conspiracy or coincidence AND that the niece & nephew confirmed he was talking about us; without them even knowing that there had been an altercation.
He changed tactics to "I just want to know where my money went and why I wasn't told until THE END."
To this, I lost my temper a little bit: "We DID explain everything we did, as we went" He denied it. So Kevin and I listed the highlights and I could see recognition dawning on him. "The problem is you don't remember and instead of ASKING, you talk sh*t about us, ask the staff to keep your secrets, and YELL at us when we correct you" we explained.
He again, VEHEMENTLY, denied it. All of it.
Then Kevin got in his feelings and told him that it's like he discovered his best friend had been lying and talking about him behind his back but instead IT'S MY DAD. He explained that he's been physically sick about this and his heart is hurt. "And when we tell you this, that you've hurt us, you double-down or yell at us"
He denied the situation again, specifically about that he's not talking to others about it. I interjected with "Shall we call Niece and Nephew? They're lying?? Why would they make that up? And who else have you told? we can bet that you've said the same thing to Uncle and Cousin and anyone else who will listen" He demurred, again. (fast forward: yes, he has said this to EVERYONE. It was confirmed)
Then he explained that he only told the nurses not to talk to us because He wanted to FIRST. Kevin explained that he's had PLENTY of opportunities to do so and didn't AND that it wasn't going to be explained away as simple as that. That the staff said they were instructed to not speak with us; not that they couldn't say anything until after he talked to us.
Kevin explained again that f-i-l has dementia and it's not new. F-i-l denied it and got wound up again. I cut Kevin off mid-sentence, put up my hand in a stop motion to his dad and said "We are Not going to argue about this. You have dementia, you've had a long while" He did a pouty shrug and tried to argue "We're not going to argue about it. We are saying that because you don't remember, it doesn't give you permission to talk badly about your family and then tell the staff to keep your secrets. There are consequences to your actions."
I told him that anytime he has asked for something, I have made sure he got it and gave examples: "You wanted $60 for haircuts. I stopped working and brought cash down to you that day. I bought you extra shirts and underwear when they disappeared, I bring you snacks, I bought you cozy sheets. All of this out of our own pocket" He said "I didn't ask you to do that" I said - with gritted teeth - "Because we want you to be comfortable and happy and NOT TO HAVE TO ASK"
Then he returned to the us spending the money for the Medicaid spend-down AGAIN. I listed it one by one systematically. Again. "I worked and stressed over this for over 90-days. I know this stuff backwards and forwards and you want to argue with me about it. What was the option? I worked hard to make sure you were somewhere safe, clean and well-cared for. What else could I have done? Just parked you somewhere and let you figure it out?" There was no response.
Then I was on a roll "You complained about the bank statements so I looked, we've brought you a bank statement every month. I LOOKED" His response was that they weren't here and where did they go, with an angry flourish of hands. I admit I raised my voice, "I don't CARE. That's not my problem. You asked, we provided and YET here we are."
Then Kevin calmly and quietly recapped everything that we talked about and how hurt he was and how it's on Dad to figure his shit out. "We understand that you forget. We don't understand that you feel comfortable yelling, accusing, and talking about us. All you have to do is ask. Say Refresh my memory, what happened and we'll tell you again. But you are not yelling at us again and you are not talking about us anymore"
Kevin then made his exit saying he wasn't going to return for a while and was going to let him work on what has happened and how to fix it. I double-downed with "You have a lot to think about and how you're going to apologize"
We called his brother on the way home to tell him how it went. Again, his brother was just speechless; that their dad doubled-down, especially after specifically requesting we come down, and after the conversation that THEY had.
In retrospect, we shouldn't have gone down there so soon. That was one of our mistakes, but he seemed regretful and wanting to make amends...then...just didn't.
AND THEN...Nephew comes home and hears what happened. (We shielded him from it because it was his birthday and a big milestone one at that.) When Kevin said what happened, Nephew said "Oh, he tells us that every time we go. It's been like the last three times, WTF" I mentioned to Kevin that I'm unsure if I'm relieved that he didn't tell us this was happening or annoyed.
Now we're to Monday. This has been going on for four days.
Kevin phoned the social worker and explained everything that had transpired. He wanted to ensure that everyone was on the same page. Astonishingly, she said that they had to keep his secret if he asked. When asked what the point of a Power of Attorney was at this juncture, she said it was still important even though it's worthless in this situation. We feel like this is incorrect and perhaps perpetuating the situation, but we don't KNOW.
The social worker says this isn't an usual experience and I'm sure it's not. What affected Kevin the most is the fact that his dad has clearly talking to everyone about this. Meanwhile, Kevin has to pretend that even though he's been cast as the bad guy, that's fine and to keep his chin up and continue to visit. His integrity has a shadow now. While it can be rationalized that they know we're NOT messing with his money, there is a shadow of doubt because everyone is human and they've probably seen it actually happen.
And while this might be their normal, we've never had this kind of situation before.
I'm not down with them agreeing to the secrecy. It feels unethical and I don't know if there is anything to be done about it. I can rationalize that they want to protect the confidence they have so he'll continue to tell them what's happening with him and to give him some agency over his life.
But this isn't keeping a secret that he's messing himself or that he's gotten weaker or something like that. This is He's saying you're stealing from him but we can't talk about it because we pinky-sweared.
The recommendation when something like this happens to to redirect, de-escalate or "join him in his reality" Well, um, okay, in this instance, none of that is helpful or possible. Think about redirecting a toddler when they want a cookie but you're on an airplane and they can't have it. But you can't leave the room, or take their television/toys away, or put them in timeout.
Days later and it was still not sitting well with me so I phoned the local Council on Aging. I spoke with the lovely human who helped me begin this whole process. She was sympathetic while letting me know that this situation is not unusual. There's some relief in This is Just a Stage.
HOWEVER, she was aghast as the social worker's decision to keep secrets and to perpetuate the situation. I tell you, I nearly cried in relief. She suggested taking the situation up a level as "certainly there is a supervisor that can be reached." I told her that Kevin didn't want to take it that far - yet - because he doesn't want to permanently damage the professional relationship with the staff. She understood and repeated that it was an option.
She agreed that everyone needs a time-out. I explained that we had decided on a fluid two weeks and she said that was appropriate. Not only to let cooler heads prevail and everyone to process but to also allow him to realize how alone he becomes when he behaves this way. (siblings are also not visiting at this point, in solidarity and even though we never would ask them to do this)
I also dropped off a folder with his bank statements, pension statements and facility invoices at the front desk to be delivered to him. This eliminates the entire "I didn't know" because he can refer to it to his heart's content. Additionally, I hand-wrote what each transaction was so there was nothing but transparency. We let the caseworker know so that she can review it with him as well. This indicates that we're not hiding anything, it's all there in black and white. Because as much as we hate it, we do need to self-protect.
Harkening back to when I originally enrolled him in this facility, the counselor said "He's in a safe environment, he's well cared for and happy there. You've done everything you can do. The rest is up to him and it's difficult to predict how that will play out." That was our first warning shot that this might Not Get Better.
AND THEN...
You thought we were done, didn't you? AND THEN, yesterday the sister-in-law went to gauge the situation and try to mediate. He is still In It. He still is insisting that he didn't know anything and we spent all of his money and hid it from him. A week later and no progress.
In the past, when we had situations like this (to be clear: few of them, but they did occur) this would be resolved by now. We are now in an entirely new situation.
Prior to knowing this, we thought it was another of his obsessive episodes (that sounds clinical, it's not) BUT the secret keeping was new. Now what's normally resolved has not, so now it is something more than obsessing and pouting.
If you're screaming that we know he has dementia, you're not wrong. Yes, he has the beginnings of dementia AND that this kind of behavior is not unusual for him. Both of those things are true. I would answer that when you're IN IT and people have been fine, one tends to think it's old behavior and not a new developments. What's different is that we don't have Kevin's mom to shake him out of it as happened in the past AND he's in a setting where he's getting attention for this behavior. We're not completely ungrateful and awful children. We are conflicted.
Also, if you're thinking "Check for a UTI" he had one in November and has been fine since. Or so we thought.
I considered editing this down so it wasn't a novella to read. I hesitated and ultimately decided to leave it as a novella because: This shows how complicated and emotional these situations are. It feels important to leave in all the gritty details. People don't talk about raising parents enough, there isn't a lot of resources for this situation. Perhaps by sharing this scenario, someone will recognize themselves or see a glimpse of their future and be prepared. Not that anyone can prepare for this situation.
