I struggle on what a normal life is. So, like, before was normal--I was single then got married to Bob. We worked, had daily home routines, went to the store, ate meals out, entertained friends. This was our normal.
The transition stage--the time between before and now--felt abnormal, like an abstraction from times in the past. Like we were picked up by aliens and set on some strange planet, stocked fully with catheters and sterile gloves.
Then the aliens did the cruelest thing. They wiped Bob's brain clean and made it so I still recognized him but who I could see was no longer really him. After which, they set us alone somewhere and ordered me to take care of this large human man who I wasn't even sure I knew anymore.
We were to figure it out.
As a writer, communication is key for me. How people communicate, the words people choose, their dialects, their body language, what they ultimately want to express--whether verbal or physical--is crucially important.
But with this large person, who couldn't speak or in any way who could communicate with me, my instincts to get through to him felt stunted, like I'd slammed into a wall, which went completely against my writer DNA.
Until, things began to change.
We writers are ordered by instructors to remain vigilante with observation. Watch everything. And that's what I began to do. Watch him as if I were a scientist and he was a specimen. Does that sound brutal? Well, I needed to understand what he needed with us both all alone on our strange new planet. What else was I supposed to do?
Fast forward. And in this now phase of life, so much has occurred between the before and transition stages, that I feel we've somehow segued back into normal again. We're still married. I still work. We both have daily home routines--he watches TV, I help him eat and drink, get out of bed and walk, help him to the bathroom, to shower. I go to the store, we don't eat out but we call in for pick up from Vinny's (our favorite restaurant). And I sometimes--not often but sometimes--have friends over.
And, this is funny. Having friends over almost seems abnormal because we have to go to such great lengths to make things appear normal (which they absolutely do not) to others. Still, after their initial shock, guests settle in with our bizzarro life and then things become fun. Not like it used to but in a different way. Sometimes Bob joins us and sometimes he doesn't. Sometimes people want to visit with him and sometimes they don't.
Whatever our life appears to others, well, I can't even imagine because I could barely imagine it was happening to us when it did.
But here's the coolest thing. In June 2023, when I nearly died from Covid, I had an NDE (Near Death Experience). During this extreme reverie, there was no pain, no suffering, no sorrow. There were people talking to me and discussing my life--how I should make changes, how I might change my ways in order to be a better person. Then, everything was soft and comfortable and loving. The overwhelming sense was intense love, comfort, and peace.
No sorrow. No grief. No pain.
Rev 21:4 "And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."
That's what I experienced. And I was blessed to get a glimpse. I was ecstatic about it and told everyone who would listen what I'd experienced.
I was also ecstatic that I'd lost twelve pounds within five days. Hey, man. I'd been dieting for a year and I'll tell ya, as a diet plan? The killer brand of Covid works.
Seriously though. Things changed fast after that. Even though we'd transitioned out of what used to be normal and were living in the present of matters, I still longed, more often, for a life of my own again. But being on my own again, meant (and means) a life no longer spent with Bob. This large man who cannot speak, although we do communicate. This large man who can't get out of bed without help or walk or urinate on his own. Or eat. Or drink. Life on my own again means this large man will no longer be here.
This large man--no matter how difficult things can get--is my entire life and my one true love and when he decides to take leave and go to God, I'll be crushed under the weight of loss.
Even though I've seen a glimmer of what comes next, I will be alone and lonely for this large man. And he is large in body but more in spirit.
Which brings me to this, he's starting to slow down. He's having difficulty breathing and congests quite often. He struggles to get his bronchial tubes cleared and what takes me six steps to walk to the bathroom, takes him thirty-four steps. I count everything.
This large man and his itty bitty steps. I pray he doesn't fall. He's struggling enough for him to endure physical pain too. And without him being able to express his feelings--emotional or physical--I just might miss it. So, unless he points to a spot or rubs the side of his head, how will I know? He can't speak.
Be vigilant, writers. Be ever observant.
Anyway, I've blathered on long enough. I just want you to know that the horror of care subsides and becomes sorta normal. What I cannot imagine being normal is my life without this man.
So, yeah. It can be tough as a caregiver. But being Bob's caregiver? Well, it will certainly be the greatest and most important thing I'll ever do in my life.
God bless you all.