What is my threshold?

Whenever people embark on something that they know upfront is going to be extremely challenging, a task in which the outcome is unknown, and there isn't a specific measure of success, they don't ask themselves, "When do I know it's time to quit?" This may be because they don't know how much they can stand until they reach that point, or because they don't want to begin by pre-setting the point of "failure." Likewise, when I was in the hospital after my babies were born, the nurses offered me different grades of pain meds. There was Tylenol, which was the only over the counter they could give me, and in my opinion, quite useless. Then there was vicodin, or percocet, which was probably quite effective but might have strange/unpleasant side effects. When I refused the stronger meds, the nurses would always tell me, "Well, let me know if and when the pain becomes unbearable." If you had asked me what my threshold of pain was (remember that 1-10 scale?) I wouldn't have been able to tell you, because I always felt I was hovering somewhere in the 6-7 region, and I didn't have any conception of what I would consider unbearable pain. I would have had to experience it in order to know. 

I think this experience of caring for Dad and helping Mom manage their lives is similar. Our agreement was a trial year, and if it became unsustainable or unbearable in some way, we would seek out an alternative. The trouble was and remains that I don't know what that means or looks like. In a conversation with Mike last night, and in my conversations with Mom it's clear that the three of us have different thresholds as well as different parameters. Everything doesn't bother us in the same way or to the same degree. For Mom I'd say it's the day in and day out of caring for someone who has lost almost all ability to cooperate with her efforts, and whose constant harping on random things (like his wallet, most recently) really gets on her nerves. For Mike, what bothers him most is watching his complete loss of dignity/self respect, or sense of. It bothers him that this is the memory of Akong that our kids are going to carry with them for the rest of their lives. And although he knows that they will be able to look at these memories with a mature perspective when they are grown, it bothers him on Dad's behalf. Interestingly, when I asked him whether this is what would bother him most if he were in Dad's shoes, he said, no, what would bother him most is the burden of care that he'd be putting on his loved ones. 

When I would reflect on what my threshold would be, what came to mind was any kind of behavior that would pose a definite risk to the kids, either physically or psychologically. There are any number of things that would fall into that category, but last night was a test of that threshold. Everyone was about done with dinner, and a phone call came for Mom. She was talking, and I was in the hallway, Dad was standing in the breakfast room, and the kids were still finishing up. Suddenly Gift came running out and said, "Mommy, Akong's taking off his pants!" I sped into the breakfast room, and sure enough Dad had his pants down, while Elfgirl and Sparky were aghast, and showing the very reasonable responses that hovered between appalled and amused. I quickly started pulling Dad's pants up again while asking him what was wrong. He said, "My wallet, where's my wallet?" I felt his shirt and pants pockets, couldn't find the wallet, and realized that he couldn't either, and thought it must be somewhere inside his clothes. Half of me tried to respond and tell him it must be upstairs, while the other half of me was like,"Oh this is just great, my Dad just flashed my kids!!" Mom hurriedly got off the phone and said, "your wallet's upstairs, so we'd better go look for it." Even so, he tried to pull down his pants again to show her it must be in there somewhere, but eventually the fact that the wallet was up in his room finally sunk in, and he went upstairs. 

Afterwards, I was left with the task of both helping the kids process what just happened, while ascertaining for myself what they really saw. I started with the question, "Did you see something you shouldn't have seen?" And they said yes. Freak out mode. "What did you see?" What they saw was his underwear and his diaper. Which jogged my memory that I got a glimpse of his Depends when I was pulling up his pants. Relief was followed by a reminder that just the behavior was enough to really set the kids back, as they were very clearly telling me, "I think I just lost my appetite. Why did he do that??" I explained that this is how far down his brain has gone. His mind was just stuck on the wallet and he didn't realize that it was inappropriate to undress in front of them, he wasn't really thinking about anything but finding his wallet. Then Elfgirl (of course, lol!) asked, "what would've happened if he pulled down his diaper?" so I said, "well what would you have seen?" and she knew, because she said, "well if I saw his penis I would really not be able to finish my dinner." I couldn't think of any response except agreement. 

This is what prompted Mike to bring up up the subject again on what our threshold is. We have our own threshold but (bless him!) what is more important is what Mom's threshold is, and how long she thinks she can go on caring for Dad. We have just this week received a visit from the VNA (Visiting Nurses Association), and through them we will have physical therapists, visiting nurses, and home health aids coming to the house. In addition they will help manage referrals to Dad's specialists, and follow up on a lot of things we could do ourselves, but have been putting off because we are rather overwhelmed with other day to day things. A big deal that I didn't believe at first is that Medicare and insurance does cover this, because Dad has been assessed and is found to qualify for this kind of care. We were referred to them (without my realizing) after we talked to the primary care nurse on Monday about Dad being up every 2 hours at night and Mom was getting insufficient rest. I joked that we must've looked really awful because we didn't ask for this referral and I was really surprised and confused when the VNA called to schedule and appointment. But we are so thankful, because this is such good news. In addition, Mom was connected to a financial adviser who is not only Taiwanese but speaks fluent Taiwanese. He is the husband of someone I met in a local Chinese family playgroup, and was referred to us by Mom's lawyer, who is also a member of this playgroup. Mom talked to him yesterday and is looking forward to meeting with him tomorrow. With two great things happening this week, and Dad being in such a good mood after the VNA visit (he does love being fussed over, ha!), Mom is suddenly feeling some renewed strength. I told Mike that I've noticed when people are going through a really rough time, all it takes is one really good day or happening, and it's enough to change our perspective, if even temporarily. 

And so, to return to my title question, what is my threshold? I am fine with not being able to answer that question definitively. Mike says that we think we know what our threshold is, then life and our reactions happen, and maybe our threshold gets pushed out a bit more. And so it is with us. Sometimes I think Mom has reached the end of her limit. But then she goes to support group, or makes another connection, or has a good choir practice, and she returns to her mantra, that it's just better for Dad to be at home until he's really "far gone," or needs critical nursing care. And we just sit with that for a while.