Heads up, our lovely readers. This post is a bit raw and carries a lot of emotion. I wrote it at a moment in time when I was really angry and quite annoyed.
There is a lot that I am aggravated with when it comes to this disease. Both people and circumstances. But, most of all, I am fu*king furious at you, dementia. There is simply no other way to put it. These feelings I have are only because of you. There would be no greater pleasure in life at this moment than to be given the opportunity to kick you in the dick ten times.
There’s no handbook on life or dementia, but I find that, due to the nature of the disease, many people don’t even ask about loved ones with dementia. I have found this is consistent with other folks going through the same situation. I can’t be sure why and, many times, it’s those closest to you that do not inquire. I know, it sounds crazy, but it’s the truth. I suppose it’s hard for them, but it’s also the reality of this disease.
You. Become. Forgotten. But hey, you’re still alive, right? We’re having fun now!
Dementia is a death sentence, people. There is zero hope for recovery from this disease or battling it. You live with it and then you die because of it. It’s not like cancer or alcoholism. You don’t get a shot at it. So, what happens eventually? You fade away. You just happen to still exist.
Dementia makes me so freaking angry because it literally took away someone I love so dearly. My mom’s body remains, but nothing else. Truly. There are no smiles.
No, I don’t know if she recognizes me, but I do believe in my heart that her heart knows it’s me and senses me.
My mind and heart wonder…what the hell is being done for this disease!?! After all, the doctors did tell us there was nothing they could do for her. Nothing. And what about the rest of us??? Who is doing what and where and how hard are they working on it?! And, guess what, after going through this experience, trust me, I’d move to a state that allows death with dignity so fast the symptoms wouldn’t even have time to set in.
When it comes to visitors, a few friends still visit. Two come a couple times a month, two others come a couple times a year. I am very grateful for her three or four friends that have put forth the effort to see my mom. It’s not easy. It’s really freaking heartbreaking is what it is. It’s a lump in the throat.
There is something I have to get off my chest and, trust me, I know conversations about dementia (or any illness for that matter) can be really difficult and awkward. But there are two things I can suggest you just don’t bother saying.
Recently I ran into someone I hadn’t seen in perhaps over fifteen years. The encounter went something like this:
An awkward hello. Her trying to turn her back and walk away from Michelle and me while in mid-conversation (I can’t be certain why) when this stunner of a question was asked almost immediately:
Is it hereditary?
I think to myself: Oh wow. Thank you so much for starting off our evening at this beautiful party in this manner. We were just kindly saying hello. Get a clue. Then….
Gosh, I’ve been trying so hard to see your mom.
I think and I know for certain: No, you haven’t.
Seriously, I can’t. I’ve been in these types of circumstances before when I truly was at loss for the right words but, I have to say, I can think of one trillion other things to say (or not say). Maybe, how are you? That’s a good one for starters. Or, if you do want to talk about June (or someone’s loved one with dementia), perhaps go with, “do you like her caregivers?”, “Is she comfortable?” or “Your mom was a good friend to me.”
I’d even take, “I’m sorry I never visit, I just can’t do it.”
I want to share with you what happened after that unfortunate conversation at that same party. I ran into a couple whose children I grew up with. The father (my mom’s age) asked how my mom was doing. In fact, he added, I love June. She was always so fun with you kids growing up! What’s she up to these days?
Clearly, he didn’t know she was sick. I gently told him the current situation while holding back tears. I can do that really well now. You want to know what he did? He gave me a goddamned hug. He didn’t say much at all for a moment, he seemed sad. He let it sink in. Afterward, we all chatted for quite some time longer because it was such a pleasure to visit with them. On their way out, he said, “I’ll be praying for your mom.” That gentleman gets a gigantic gold star–an A+ for his kindness, thoughtfulness, and sincerity. That will be the type of interaction I will hold onto and cherish. I’ll work on letting go of the other bullshit one.
I will add his compassion to what I have learned in my 36 years of life and use it as a tool as I grow older. I am grateful for that moment because it made me feel less weird about having a mom with dementia.
It made me feel like a human and not a mutant.
Dementia, you are an utter asshole. You are the only thing I hate in my life.
Jen Sbalchiero Griffith says
Thank you for sharing, Lauren. I’ve talked with Michelle about this in the past. We’re dealing with the same thing on our end with my Mom. We moved her into memory care in August. The transition has been difficult for all of us. The disease has basically sucked the life out of her. She’s a shell of herself. Talks differently, walks differently. Her emotions are labile. And most of the time they aren’t pleasant or happy ones. My husband and I visited my Mom on Saturday, and as we were leaving she started to cry. I brought her back to her bedroom and sat down next to her on the bed. I put my arm around her and held her close. She tried to explain, in between the gentle sobs, that she was lonely and didn’t have any friends there. The moments of what seem to be lucid thinking are what I find so difficult to handle. Is it her old self talking or is it just the disease? Nobody prepares you for the role reversal. It never gets easier. I have kept an old voicemail on my phone that my Mom let me a few years ago. I listen to it every now and then, just to hear the voice that I remember so much. A voice filled with life and zest, humor and love. A voice my heart so greatly misses…