Back in the days before my children catapulted me into the gifted/2e world, I worked at a geriatric behavioral health center. We facilitated groups on all the basic things you’d think a behavioral health center would: depression, anxiety, grief, trauma, etc. Specializing in geriatric care, however, meant that we also confronted dementia at various stages. I generally worked with people and families when dementia was first rearing its confusing head. I provided resources, helped families seek out the appropriate diagnoses and treatments, helped with long term care planning, and, of course, walked with them through the grieving process of the potentially drawn out long goodbye.
At the beginning stages of dementia I frequently provided comfort to the families as they considered the future suffering of their loved one. I let them know that the beginning stage is the most difficult time for the patient theirself. Initially the frustration, anger, and grief builds as the person becomes aware of the changes in their abilities and memory. Once the initial phase passes, however, there exists some comfort and peace as the patient lives more and more in their own internal universe and is no longer able to remember or recognize their limitations or how their life has changed. The family carries the burden of remembering and knowing, but the patient can be blissful in their ignorance.
I couldn’t help but think of this when I had a heartbreaking conversation with my daughter a few weeks ago.
We were sitting in her room having our nightly chat while getting ready for bed. I don’t remember how it came up, but our light-hearted conversation suddenly shifted as my daughter said, “Mom . . . I’m not going to get married or have kids. Well, maybe I’ll get married, but I won’t be able to have kids.”
I’m completely fine with whatever choices my kids make, but I was curious why my 11-year-old who loves playing dolls and hospital and teacher and babies and hanging out with little kids had come to this conclusion. “OK. Whatever you want is fine, but can I ask why?”
Her eyes dropped and she said, “I’m worried I’d hurt them. When I have a meltdown I can’t control myself and if that happened with my kids I could hurt them really bad.”
Tears. For me, not for her. She’d obviously put a lot of thought into this. She had worked through it in her young, but wise, mind. My heart broke.
Of course, we talked about how she has time and we don’t know what life will look like for her when she’s an adult or how the therapies she’s involved in will pay off. We decided the decision could be made at a later time, but still, my heart broke.
Her intellect allows her to be acutely aware of how different her life is. She is able to extrapolate her current situations to the unknown and create relatively rational hypotheses. She isn’t able to live in the bliss of ignorance. She isn’t able to be unaware. Instead, she lives as those with the early stages of dementia, knowing that she wants to be capable of so much more and grieving for how her neurological makeup is interfering.
She’s 11. There’s time for maturity, brain development, OT, PT, all the T’s to alter the trajectory of her life. She has already come so far from where she was just a few years ago. I do not discount the possibility of her being a phenomenal mom. I anticipate, with the appropriate accommodations, she will be able to live the life she wants and not be held back by her ASD or epilepsy or intensities or dyspraxia or anxiety. I’m hopeful.
But that’s for the years to come. And right now . . . she’s 11 . . . and she’s sad because she doesn’t trust herself to be a parent one day. And it’s heartbreaking.