When everyone returned to Middle’s after swimming, my husband and I sprung the idea of leaving that evening after dinner.
Our kids appeared fine with the plan, and Middle seemed perhaps a bit relieved – her morning of getting kids to daycare and herself to work made a little easier by not trying to throw in goodbyes-over-breakfast style chaos into the mix for good Monday measure.
Mom came over for dinner, so once again, around an adult and kid’s table: my family, Middle’s family, various kids running around, Mom. I don’t remember exactly what we talked about, except it had that smoothing-over-small-talk tone people get to ensure nobody veers off into dramatic territory again.
But I could tell my mother was Sixth Sensing our early departure, as she started putting out feelers such as, “Do you want to send the kids over for an early dog walk before you leave?” and then upping the ante to, “We could go out for coffee early, maybe even breakfast.”
I told her we planned to scoot out after dinner.
Her shoulders slumped. Her face lost color. “I thought you’d stay all three days.”
I said it was easier for Middle, whose house all five of my family members had been living in since Friday Night (I’ll throw Middle under the bus in a heartbeat, Exhibit A). Plus, Monday wasn’t really a third day in practice, since we’d initially planned to leave at like 6:00 am. In conclusion, all we were missing was a night of sleep.
Mom waved me off, clearly hurt.
About an hour later, we packed our belongings up. As we all exchanged hugs and goodbyes, Mom said too loud, “You know, if you leave a day early next time, I’ll just make sure to have our big emotional blow-out on the second day. You can’t avoid it.”
I know she meant it as a joke, but I could barely stifle my physical recoil.
Maybe that’s too kind a retelling. Probably I did recoil. There was definitely a painful silence in which nobody laughed, or joked about big emotional blow-outs, or assured my mother we weren’t leaving early because of it. Any awkwardness or pity I might have felt was a far second to my rage/terror at whatever underlying truth had made her make that joke: fuck her for implying any visit would now require a pound of flesh. It’s only more than a month later that I can look back at that interaction and entertain the possibility she might’ve merely been making an embarrassed, flustered joke.
We piled into the car and drove home. I bitched 3/4 of the entire ride home, no exaggeration. The take-away of that bitching was that I never wanted to visit my parents again. More than the incredible stress of such a short visit, I felt like I had completely fucked everything up.
You know that expression about the tail wagging the dog? I’d started the visit thinking I could be this dog of normalcy, the weight of my presence reminding my mother what it was like in the outside world, drawing her isolation and sadness back into an orbit approaching sanity.
Instead, my mom somehow became the wagging tail of batshit chaos, shaking me and Middle from our normal lives. Both of us combined could not get my mother back on track, but she was able to completely derail us. It was scary as fuck to realize that, although I guess it might be well duh territory for an observer. But it became clear to me that my mother’s need for support has outstripped my abilities. She needs more people to care for her, to listen to her, to help her get through this. It very much feels like she is now actively drowning, and I am terrified to reach out, for fear of being pulled under with her.
Talking it out with my husband, I mentioned something my mother had also brought up that afternoon during our huge talk: my Dad abandoned his own parents when they got old and frail. He never visited his father’s deathbed, though he had the opportunity. Dad also flatly refused to help care for their elderly mother, even though his sister begged him to help. “Use her money and hire help,” My dad is alleged to have replied shortly before ending the conversation. “That’s what money’s for.”
As far as I know, my father loved and respected his parents. It’s long been a mystery to me why he made those decisions. I blogged about it here, and here if you want to see that pondering in real-time.
Perhaps because I heard it come out of my own angry mouth, it occurred to me that my mom’s plan to take care of Dad is not my only option. It’s easy to forget, to feel she’s the head of our family, the holder of our value system, because she’s the one wagging the dog. But the truth is, my Dad left me a greatly detailed and clear-cut road map for how to care for failing, elderly parents. And his roadmap is true to what he always said he wanted: You don’t spend any energy on the the generation above you. You save everything for the children in your care.
From a cruel perspective, I might say my father abandoned his own parents as they slowly crumbled into death, why should I take care of him any better than he treated them?
Or? And this kind of kills me, but what if somehow this is a gift he prepared in advance? You know, I was there when he got the phone call that my grandfather was about to die. We were a seven hour drive away, my father could have made it. But he said “Thank you” and hung up the phone. When my grandfather died a few days later, my father did make the seven hour trip to go to the funeral. I’ve always been puzzled by that, but was also always to afraid to ask him about it. I feared that by bringing up the question, my father would realize what he’d done.
But now I wonder if he always knew what he was doing. if some part of him wanted to show me it would also be OK if, when the time came, I walked away from him and never looked back.
So, I must have been hearing you plot this post out in my mind because I read this piece a few days ago and sent it to myself to give it to you.
https://www.npr.org/sections/health-shots/2018/09/15/647992785/to-manage-dementia-well-start-with-the-caregivers
I hope you will be able to open it.
Essentially, it provides guidance on how to survive being the person who helps the person with dementia (and those around the caregiver). They are very clear in the piece about how resources need to be flooding the caregiver, not the person with dementia.
It seems to dovetail nicely with the way that your father approached the care of his parents – in some respects. It also presents some insight on how you all survive your father’s decline. You all can run yourselves ragged and burn down your relationships, but he is still going to die; he is still going to be emotionally and mentally absent from his own demise. It may seem heartless or cruel, but it is the truth. It is, in some sense, what he was contemplating when he wrote out his wishes.
I know this is hard, but I think you are on the right track. And those who have done this before (or as caregivers do it over and over) must have something from the experience to help the rest of us facing this situation.
In my case, as I prepare to return to my parents (countdown has started – 56 days), I want to make sure I am being as clear-eyed as possible. The cultural heritage I was born into demands that one daughter (usually) give up whatever in order to care for parents as though they were her children. This comes regardless of how said parents treated that daughter when she was a child or adult.
I remember my aunt, whose parents had been unusually mean and harsh with her, was somehow the anointed daughter, even though there were three (not to mention sons), who had to care for her parents. When they were too ill to be on their own, they returned to our town, to her house. When they could not be cared for in the house, they went to a nearby convalescent home. My aunt took them meals every day. Every day. And she never complained, at least not in my earshot.
Yeah … with an aging society, we all need to get a handle on this. Too many reports on this focus on the financial cost. There are other costs.
As always, big hugs to you and yours.
Thank you for the link, I was able to open it. I loved the suggestion to get small cards that say, “Please understand my husband has dementia.” My mom has mentioned before how embarrassing and difficult it is when my dad has bad interactions while they’re out.
Thank you for the kind support, especially on this post that brings up pretty anti-socially accepted ideas about turning my back on my parents when they are so fragile. It’s hard to convey how much it means since I can’t cry and hug you in person.
I’m so triggered by my mother’s caregiving that it’s hard for me to think of positive, encouraging things to say as you get ready to take care of your parents that don’t feel immediately like they might carry unintended messages. Mostly because like you said, there is already so much cultural pressure likely on you to do this, and I don’t want to feed into that. So I’ll stick to: From what I know of you, you are thoughtful and smart and reasoned, and I have faith in you. Sending you good vibes to do what needs to be done, in whatever way that looks like.
Finally, your comment about the anointed daughter stuck a chord with me. Considering my extended family, it does seem often that the least favorite child is also the one who is tapped for elder care. This breaks my heart. I’ve wondered if it’s a lifelong manipulation of the parent to meet their own needs.
I have a relative who said (when I asked why they agreed to bear the brunt of eldercare), “I feel like this is how I can make up for the things I did as a child.” Which makes me cry even now to consider. But, at least in the situations I have familiarity with, the child seems to get some gratification, as if the parent’s helplessness/dependence forces them to love the child on a deeper level. Even if the parent’s behavior is still pretty shitty on the surface. 🙁
<3 to you.
Just now catching up on all this. Things have been keeping me away. I would like to start by saying that you remind me of myself in many ways. I have cut ties with family, too, when the business of being related has become a burden instead of a grace. My own father knows the reality of that situation. The hardest part of letting go is the final push. The final “Not again. I can’t do this same shit anymore.” I also see life a little from Middle’s side because I’m the oldest, the only girl, and it pretty much falls to me to be the caretaker of my mother if/when the time comes. I get her need for rules and I get your need to take a step back and look at the needs of your family first. I have 3 kids of my own who come with some special needs and so my role with my mother may have to evolve to meet our mutual needs instead of the original plan of me being her sole caretaker because my life led me down a different path. Your life led you down a different path as well. You are doing what is best for yourself and your children’s future. Don’t kid yourself into thinking that when it comes down to the wire, your sister won’t do the same. She will and she will follow your lead. I know it all sucks right now but you are doing the right thing. Your dad would wholeheartedly agree. Love to you, my friend. You can do hard things. (((Hugs)))
I’m very far removed for your situation. My dad died when I was pretty young and my mum died suddenly five years ago. I had had a conversation with her (based on her neighbour’s physical and mental decline) that if and when she couldn’t live independently for any reason, it was my way or the highway. She was still living on her own so it didn’t come to that but if I had to take on the responsibility, I was going to do it the way that made the most sense.
Anne, all of that is to say that I want to yell at your mother, “My god, woman! Don’t go down the ship!” Her responsibility to her spouse is to make sure he is as safe and comfortable as possible. I don’t think she can do that all by herself when she is running on fumes physically and mentally. I don’t know your dad but I know enough doctors, nurses, and eldercare planners and they would all tell her to save herself. I can’t imagine your dad would want her life to disintegrate.
I may sound cold, but my first job in healthcare was in the sector that plans and facilitates ‘aging at home’ and admissions to long-term care facilities. Where I live, you have to go through that agency if you want supports to stay at home or to apply for a place in long-term care. I was in my 30s and unaccustomed to the brutal pragmatism that is employed by everyone working in that sector. It has stayed with me all these years later.
Your mother isn’t doing anyone any favours by carrying on the way she is, least of all your dad. I wish she would value her own health and existence as much, if not for herself then for her family. I know that you know that, though. I wish you strength to get through this. xo
Thank you. This is truly a kind note, and appreciated. I’ve been trying to think of an analogy for what it’s like to watch her do this, in the hope that if she could see what she’s doing, she would modify her behavior. The closest I’ve come to is suicide/drug addict, in terms of being helplessly on the sidelines, watching someone go down.
I actually saw her yesterday, and since I couldn’t settle on the perfect, “Hey, talking to you is like X horrible scenario,” when she started in, I ended up staring off into space, not picking up any of her gambits, until she pointed out I wasn’t responding and stopped talking about her plans with Dad.
Although accidental, it was surprisingly effective in un-hooking me from that struggle of trying to get her to see the light. Disassociating in real time is probably not doctor recommended, but I gotta say, it had some upsides.
Thanks again for the comments. I don’t know what I’d be thinking on my own.