I’ve been holding on to this thing for a while now, and I think that I’m ready to discuss where I am in the process. Keep in mind, the experience that your family may be having may not be anything like the account I’m about to give you. Hell, my perspective of it all may not reflect how anyone else in my family feels right now… but I know that I can’t be the only one that feels this way among the community of people with family members that have Alzheimer’s. As a community (I’m talking about Black people now), we don’t share these stories so every time one of us goes through it, it’s brand new and none of the information available has our cultural context applied. For all these reasons, and the fact that my Grandma is in no shape to make me pick a switch for a whipping, (I think she’d laugh at that) I share this story.
Watching your loved one lose their mind is a frustrating, borderline infuriating process. There’s one side of it where optimism lives, and you go on as if everything either is or will be ok. Then there’s the side of reality where all of that is a lie. Everything is not ok, and also, there’s nobody to blame, nothing to protest, and nowhere to boycott. You just have to live in that thing. Each day is an additional goodbye to what’s left of the person that you once knew.
People talk about waiting for the “lights” to turn on, and how exciting or happy it is when they have a lucid moment, but it’s excruciating… why? Because they seem to have those moments just before you come to terms with the idea of them not being all there. It’s also extremely sad because you know that just as quickly as they came back to you, they’ll be gone again.
Then you think about what they would want you to do in these situations. I can’t help but think back to when my grandmother would travel to see her brother that had Alzheimer’s and Dementia and how she refused to give up on him no matter how long he sat without recognizing her. The whole family would be dead dog tired after riding in the everlasting heat of Alabama for hours and we would just wait until she’d had enough of asking him if he knew who she was. Then she would get in the car and say
“He’s not a throw away. We don’t throw our family away. There’s still something there.”
So now that it’s time to walk this road with her, every moment of considering giving up, is haunted with her words… so you rip the band aid off and try to get her to come out again. I’ll admit that I don’t believe that I’ve been the best grandchild that I could be. It’s so hard for me to come back to the world if I see her on a bad day that I double-dutch the contemplation of each visit. “Well, how’s she doing today?” “Is anybody with her right now?”.
Visiting was easy when she was in the super-plush tricked out rehabilitation facility after a recent fall. Grandma is not a fan of strangers, so while she didn’t warm up immediately, she eventually established a routine and became comfortable. Now, she’s back home and we had to make improvements to the house to assure her safety. This means her environment is different AND there’s a bunch of strangers around the clock to keep her safe. Strangers that she’s ready to fight to get them to leave her house.
I want to cry so badly because I know that she’s scared (because when she comes out, that’s what she tells me) but I am so grateful that the strangers are available because I promise she couldn’t have picked a worse time in the life of the family to be ill. Everybody is booked to capacity. From people making professional and personal shifts and transitions, we don’t even hang out like we did in years past. It’s nearly impossible to get us all in one place on a non-holiday.
With the family dynamic comes the frustration of wanting to be able to effect more change. I’m the only grandchild, which in many times puts me in the placeholder as the 4th kid. When I was living with my Grandmother trying to get my life back, I couldn’t wait to use my Paralegal degree to help organize her estate prior to taking the information to an Attorney. Now that we actually have to use some of the things I helped locate and file, I have to fall back and just hope that the kids make great decisions about their mom… even though I owe my life as I know it to her and Jesus.
The up-side is the fact that we’re all forced to figure out how to work together while Grandma’s still here. I’ve been through the death of my other grandmother and watched how it shook my other side of my tiny family out of socket. From petty fights during the grieving process to a complete overhaul of the order of dependency. I know that facing the hard times, while there’s still work to do is going to help us be a tight unit whenever Grandma goes to Jesus… but that requires us all to kick in where we can so that nobody gets the flake title.
In all, I’m just scared, and not for myself, but for my Grandma that once ruled the family with an iron fist and would strike fear and reverence into all who dare cross the threshold. She’s no longer in charge of the house that she was able to help her husband purchase by using coupons and saving the money he gave her as allowance while she took care of the children. She can no longer tell me the stories of how she dreamed of making it out of her hometown, and made it happen despite not having the approval of her father. Our times in the kitchen, have come to a close as the knobs have gone away from the stove to make sure she doesn’t forget to turn off the pilot. These changes are the ones that I don’t really believe anyone could have warned us about, the emotional shifts that happen inside of handling the business that needs to be handled for the safety of your loved one.
I walk away feeling like I know exactly where she is, but it just takes a while to find her.
No matter how sad we get, how long we can keep her home, or how difficult the road may be ahead.. she’s not a throw away. We don’t throw our family away. I just miss her so much already.