Okay, morbid thought here but I know I am not alone:
I was thinking this morning while getting dressed for a laid back Sunday with the sounds of my husband fixing something to eat in the kitchen and Toy Story 2 in the background (which is the case 90% of the time) - What if something happened to me? What if I just suddenly was gone? Is my husband prepared to completely fill my caregiver shoes for my grown, disabled son?
Or if we both got wiped out, then it’s up to my girls at the ages of 21 and 23 to fill that role. They would inherit their brother and all that goes with him just as their adult lives are getting started.
They are not prepared for that.
Honestly, neither is my son.
My son, Tay, is 27-years-old with the diagnosis of 8p-23 Deletion Syndrome. A de novo (non-inherited) chromosomal condition which includes profound non-verbal autism, medication resistant acute panic disorder with agoraphobia, epilepsy, microcephaly, high risk of diabetes and heart conditions, mild self-injurious behavior, etc…etc…etc…
In essence, he is fully dependent on the support of others to eat, be clean, get dressed, be safe, be comfortable…survive. Everything. 100%. 24/7. 365.
He is also the sweetest, bossiest, most charming grump you will ever meet and he is and shall forever remain my precious, precious baby boy. He likely hears “I love you” and is told that he is awesome more than nearly any other grown man you’ve ever known, and as far as he knows, that is how his life will always be. He is in no way aware of my mortality.
Of course my husband knows how to feed him, give him his meds, bathe him, put him to bed, give him love, but I'm talking about the rest of it. The deep stuff. Does he know what medications he is taking right now? The dosage? When he takes what? The name of the doctor that prescribes them, or which ones we are increasing and decreasing right now?
Would he know what Medicaid waiver we use and what my responsibilities are where that's concerned?
Furthermore, does he even know how to make my tea??? The staple of Tay’s hydration and the main beverage of the only 3 liquids he will allow past his lips!?
Is he aware of which breakfast foods he is willing to eat right now? And what specific brands of those foods?
The list I could make… THE LIST!!! It could go on and on and on!
Please know, none of this is a disrespect to my husband.
He's an absolutely wonderful and loving father. A role he chose when he married me (in the absence of my children's biological father). He is pretty exceptional at it and has always been very involved. I am not concerned about his ability to learn how to do it all, but my God, there is so much he would have to learn! Being the primary caregiver to an adult son or daughter with complex needs and disabilities is not just a full-time position with a standard black and white list of responsibilities. It's a live-it, breathe-it, all-consuming, fully-encompassing role in which you construct, mold, and bend every aspect of your life around this human’s every single need. You exist in this orbit. That’s a lot to take on.
Listen, I know when I'm gone that no one will do it just like I do. I also know that it will be difficult for my son no matter how well prepared my successor is. I've accepted that, albeit reluctantly and with a great deal of grief. I have created a binder for him that is a basic instruction manual. That would help but it is far from comprehensive.
I know of a family for whom the mother was the primary caregiver for the grown daughter and dad was the breadwinner. Mom tragically lost her life after contracting COVID, and now Dad has been thrust very suddenly into both roles. All while grieving.
My heart absolutely broke for all three of them when I heard about it. Their story has left a constant churning in my gut.
So what can we do? I wish I knew the answer.
I do know that we have to do something to prepare, and I don’t believe many of us are capable of doing it alone. We aging and caregiving parents are going to have to lean on and learn from one another. We need to have difficult conversations. We need to schedule time to prepare for “someday” if we are to ever have any peace of mind and heart.
I do have some thoughts on the matter, but also have much to learn. How can we work together to make the inevitable a little less painful for everyone? Nothing will be perfect. Nothing can replace you. But I do think that together we can find ways to ease the transition for all involved. A parachute, so to speak. I will be sharing my thoughts on that very soon and maybe some of us can journey this path to the future together.
For now, let’s start with having a conversation with our families or whoever you expect to step into your shoes someday. What would they need to know? Let’s ask and find out. We can take these first steps together.
With Eternal Devotion,