Preparing to Live in Peace
This week I’m taking Step 1
<Welcome to Sandwich Season, where I explore the burdens and blessings of life in the sandwich generation—juggling the needs of my parents and son, who has special needs—in the hopes of encouraging others in similar seasons.>
Dear friends,
This is issue No. 47 of Sandwich Season, and as my e-newsletter’s one-year anniversary approaches, I feel something shifting inside.
I’ve been thinking less about losing my mom and more about the very real fact that one day I too will die.
Wait! I don’t say this to be morbid. It’s just that it has become real to me, and to some extent I feel a sense of peace about it.
Several years ago I went through a bit of a panic about dying. I remember telling my husband, Jon, and a few close friends, “I’m never going to be able to die.”
I know that sounds ridiculous—as if any of us really has a choice.
But hear me out. It wasn’t so much that I feared death, but I worried about all of the things that I would leave undone.
Most of these fears had to do with our son, Max.
Max has special needs, and ever since the week we brought him home, at age 3, I have been the designated point person for Figuring Things Out in the parenting department.
In addition to the usual tasks of parenting, I’ve shepherded his Individualized Education Plans (IEP) at school, signed him up for umpteen different therapies, overseen his extracurriculars and other enrichment opportunities, got him in for testing and evaluations, argued and advocated for him (and us) when educators and doctors tried to convince us he was “fine,” worked with social workers to set up supports through three different counties and two states (due to our moves) plus the federal government, made healthcare appointments, spearheaded our guardianship process, and on and on and on …
This is NOT to say that I’ve been doing it on my own. Jon and I are a team, and he has attended a good share of appointments and troubleshooting sessions. But for many of these past 16 years, Jon has been the primary breadwinner while I’ve remained self-employed for flexibility’s sake, so my schedule remains flexible and I can be an effective primary caregiver, researcher, sleuth-er and form-filler-outer.
So … many … forms …
This is why I worried about meeting my demise. Would Jon be able to step in and take over?
The question isn’t whether he is capable. Jon deals with complex issues all the time. But to have to suddenly step in and take on the complexity of Max’s life—in addition to a full professional workload—that would be a lot to ask of anyone. Especially with my filing … ahem … system.
So I figured I simply couldn’t die.
Then, last year, I watched as my mom declined and faded and died. She was 81, so her dying was not shocking.
She had dementia, so the fact that this once pathologically well-organized person left the world with a flurry of papers in her wake also was not shocking. I found lists and important paperwork in her nightstand … and in the storage room … and in the file cabinet … and in a basket in the kitchen … and in her office among homemaking and gardening books. What the heck? I asked over and over.
One thing I find interesting now, a little more than a year after losing her, is that even though her mind seemed to clear toward the end of her life, and we had lovely conversations and emotionally healing experiences, she didn’t seem to worry a whit about the scattered paperwork or her special items, which she had treasured and maintained in mint condition all her life.
They were so important to her before she began her decline, and looking back now, I find it odd that she didn’t offer last-minute advice, like, “Be sure to keep Great Aunt So-and-So’s pendant, because that’s a treasure,” or “See what you can get for the antique humpty-dump, because it’s really valuable.” Or “You know that red-and-green-layered Jello recipe I used to make every Christmas? The recipe is in the name-that-spot.”
No. None of that. She didn’t tie up any loose ends. She just let it all go and died.
Which was great for her, in a way, because dementia is horrible, and she was ready to go.
And it seems that she had the right idea. As we prepare to leave this life, shouldn’t we release our hold on the things of this world?
But if I can be perfectly honest, I find it hard to express how much this has sucked for me. And, really, how it continues to suck for me.
Because in addition to missing her, more than a year later I am still trying to figure out what to do with what’s left of the mountain of things she left behind. And my dad and I are still working on paperwork.
You might be wondering how Dad feels about this post. I shared with him what I’m writing about this week and how this journey has affected me. He understands and said that he should really be doing much of what I’ve taken on.
But the fact is, caring for my mom consumed and depleted him, and not long after she passed, he had a stroke, then a TIA and then COVID. And in the midst of it all, he needed to move from their shared apartment in assisted living to a new apartment in independent living. Needless to say, he’s had a lot going on and has had to focus on his health.
I will say that if my parents—both of them—had downsized and filed and prioritized and maybe labeled their treasures, I would have known from the start what really needed my attention and what I could have just boxed up and delivered to the thrift shops and consignment centers and the dump without feeling I had to make a decision about every little thing.
Instead I’ve been trying to figure it out in the midst of the grief and loss, while being present for my dad. And Max. And Jon. And myself.
And I’ve been thinking again about what will happen when I die—and worrying, again, about the question, Can I die?
Before taking on my parents’ stuff, my own life had seemed complicated enough—particularly with overseeing all of Max’s needs and programs.
What I do know for certain is that when I die, particularly when Jon and I both die, Max will not be able to do what I have done for my parents. That is, plow his way through what we’ve accumulated, not to mention the paperwork. Oh-ho, heavens, no.
And I wouldn’t want him to have to do that anyway, even if he could.
But if things don’t change, we could leave behind a situation resembling what I’ve been working through over the past year-plus.
That’s why Jon and I are trying to get ahead of things here, so as we age (God willing we age!), we and our stuff can just fade away.
So, Step One. This week I’m drafting my obituary.
I’m also starting to compile important information in an “If I’m Dead” binder.
Does this sound gloomy? I hope not. Because the truth is, just taking the first steps down this path of preparing for the inevitable makes me feel a whole lot lighter.
What I realize is that if I prepare to die now, I can live the rest of my life in peace.
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As always, I enjoy reading your posts, Sarah. I haven't purchased, but I keep looking at The NOK (next of kin) box system that has created forms to complete and a filing system for your NOK. I wonder if having the forms to complete could be another option for a "If I'm Dead" binder. I'm sure I'll want to edit the forms as they won't be exactly how I'd like, and will need to update every so often, but would give me a place to start.
You starting with writing your obituary completely confirms my writing/revision revelation this morning- start at the end and work backwards, tying the important strings together... if that makes sense.