When I think of what makes up who I am, a large portion of that is my memories. My memories prove that I existed…I walked in this world. And hopefully I had an impact. We often think our mind is really who we are. Our ability to think, reason, remember, hold memories, have rational conversations, communicate our feelings or ideas, or just having ideas at all. Now my Buddhist studies teach me that there is no solid, permanent self…that’s a conversation for another day.
Memories give life meaning. Memories help us to feel like we’ve lived a good life…or maybe a tragic life. Memories stitch together the fabric of our lives…the up and downs, joys and sorrows, pain and trauma. Memories, in large part, tell us who we are. I know who I was born to, where I was raised, schools I went to, friends I made, people I’ve loved, marriages, divorces. We remember the births of our own children and watching them grow and mature into adulthood, maybe even have their own children. The framework of my life holds the people and events that I possess as memories.
And why is this on my mind, you wonder? Because there is a tremendous growth in all forms of dementia in this country. We hear about Alzheimer’s most frequently but that is only one form of dementia. Dementia scares me. Losing my memory scares me. I have told my children (they are all adults…most of the time 😏) that as I age, if I reach a time when I don’t remember them then I want them to help me die. I can’t imagine anything sadder than not remembering them, or my wife, my grandchildren, friends…all the associations that create my life as I know it. Maybe I won’t remember that I don’t remember but still I don’t want to be around…I can’t imagine life having less meaning for me than being alone even in the midst’s of people I’ve known and loved my whole life.
Sometimes as people age, they become depressed or angry…sad maybe. Full of regrets about what did or did not happen in their lives. Dreams never realized, opportunities lost, failures of one kind or another…disappointments. I think we feel those things more keenly as we move through the latter portion of our lives. I guess that can make people mad. I get that.
My own observation of people is that as they age, they become more intensely who they already were. If you were unhappy your whole life you won’t suddenly be filled with joy. If you loved your life, you’ll love it until the end. Buddha said that we are what we think and that with our minds we create the world. I’m not sure I’ve ever read anything truer in my life. We will continue to live the life we created in our minds. So, what happens when you start to lose your mind, your memory?
The movie, “The Notebook”, is a story about the romance between two young people. These characters, Noah and Allie, marry and then in their later years find themselves living through the experience of Allie’s dementia. When Allie found our she had dementia she started a notebook. In that notebook she wrote the stories of their lives together. She asked Noah to read it to her when she couldn’t remember, and she would come back to him. The movie takes place in a nursing home with flashbacks of their love affair. Noah visited Allie every day, even though she had no idea who he was, and he read to her from the notebook. She loved hearing about the love story of Noah and Allie. Noah hoped the notebook would jog her memory and that she would come back to him, even for just a moment. It’s a beautiful movie…a real tearjerker. I won’t spoil the story in case there’s anyone on the planet who hasn’t seen “The Notebook” yet.
The thing that is so difficult to believe is that she really didn’t remember. People lose their memories. They don’t remember anything. Really? That boggles my mind. How can that be? How can I still be me without any memory of who I am or how I got to where I am? How is that real? Where do all these memories go…somewhere in “the cloud,”I guess. It’s such a mystery to me and so heartbreaking.
My wife and I moved to Florida almost a year ago and we brought my parents to live with us. Our hope was that they wouldn’t ever need a nursing home because they could be with us, and we’d care for them. My mom has dementia. That’s a rough diagnosis to take in. Perhaps harder for the people in your life because frankly, you don’t remember…every time we talk about the dementia it’s new information for my mom. New information that infuriates her. She’ll tell me her memory is getting better and ask why can’t I give her good news sometime…or why does she need to know all that depressing information? Why does she? Maybe she doesn’t. There is the saying, “ignorance is bliss.” Not sure that’s true. I tell her about the dementia so she can make sense of some of her behavior and her forgetfulness. Maybe I need that more than she does…the making sense part.
Now I am disabled, so I have some understanding of loss…needing assistive devices, chronic pain, loss of abilities, etcetera, etcetera, etcetera. But I can only imagine the loss of my memory. I’m old enough that I get the “what did I come in here to get?” moments…but they’re moments…they come and, more importantly, they go. A couple years ago when I had an infection in my elbow replacement and had to have it removed, I had some problems. Maybe they were side effects of three surgeries in six months and months of IV antibiotics, I don’t know. All I knew was I couldn’t remember things I was told, my balance was off, and I felt like my processing of information was seriously delayed. I was so scared. I was terrified that I my mind and memory would be stuck in that awful place. Fortunately, I wasn’t stuck, but if I had dementia, I would be, and it would continue to get worse. I can only imagine what that fear would be like…panic and terror I suppose.
All of that would make for a seriously bad mood…people telling you what to do, giving you bad news repeatedly. You can’t drive, can’t go out alone…most of the freedoms we take for granted, gone. My mom wants to be dropped off at a shopping mall by herself. She wants to use Uber and be on her own for a few hours. But I can’t let her. It’s not safe. She can’t use Uber because she doesn’t know her address or the name of the apartment complex where she lives. She can’t be at a mall alone because she’ll get lost. She’s 90 and exhaustion can hit her suddenly and she needs help walking or the use of a wheelchair. All of that really pisses her off and I understand that. Even though I understand, I can’t let her do things or go places where she isn’t safe…that pisses her off too. And all of that makes for a volatile environment.
Moods for people with dementia, for my mom, can change very quickly…and it always surprises me. In the movie “Pretty Woman” there’s a scene where Richard Gere, who plays Edward, thinks that Julia Roberts, Vivian, is doing cocaine in his bathroom. It turns out she’s flossing her teeth…strawberry seeds, go figure. Edward shakes his head at his mistaken assumption and says, “Very few people surprise me” and Vivian replies, “You’re lucky. Most of them shock the hell out of me.” That’s me. I am frequently surprised…especially by the mood changes. Sunday was one of those days. My mom woke up fighting mad…literally. Nothing happened, she just came out of the bedroom all piss and vinegar. It was a full day of complaints, accusations, verbal assaults, name calling, and being told to “fuck off.” Needless to say, it was a long, exhausting, painful day. Now I imagine that Sunday was awful for my mom as well, except that Monday morning she didn’t remember anything. WTF!? Are you kidding me? How can anyone be a 4’10” hurricane of vitriol and not remember? I found myself wondering if it was true and how could it be true? How could you be that hurtful, go to sleep, and wake up with no memory of your behavior? No memory of how much you hurt people?
And there’s the rub…she can’t remember but can I let it go? I read a quote in a book once that said something to the effect of, “I’ve never let go of anything that didn’t have claw marks on it.” That is also me. Letting go is not my strong suit. I wish it was. I also wish being relaxed, easy going and patient were, but wishes do not always come true…even if you wish really, really hard.
Now let’s be real, letting go sounds easy…just let go. Duh! Open your clenched fist and LET IT GO…for the love of God, pry it out of your hand. I guess I’ve got movies and television on my mind today…in the television show “Reba,” her son-in-law, Van tells Reba, “I have one word for you, letitgo.” Reba says, “That’s three words.” And Van says, “Not the way I say it, Letitgo.” But how? How do I, how do we letitgo? I believe I come from a long line of grudge holders…people who remember every way you have hurt, offended or slighted them for your entire life. Letting go does not come naturally to us…my Irish Catholic people…and not to me…although I’m still wishing.
Why not let it go? What benefit would I get from hanging on? Holding on to the hurt, pain, mistreatment, abuse, nastiness? It must serve me in some way, or I’d fucking let it go already! I suppose that hanging on to the pain could make me look all noble. “Look at her? Even with all the mistreatment, she keeps caring for her mom?” A little inflating of the ego…everyone likes that at times. My sister jokes that she can’t tell if I’m a saint or really stupid taking this on. I’m gonna vote for neither. You do not have to know me well to know I am no saint. I swear to fucking much for that consideration. And I am not a stupid person, although in this instance I might have been a smidge naïve…just a smidge. I certainly did not anticipate being accused of elder abuse because I don’t make enough vegetables or taking care of them because I want their money or hating her…apparently, I brought her here with me because I hate her and want to make her miserable. She would rather “live in the gutter than in this hell” which we call Florida. I definitely did not expect all of that and it shocked the shit out of me.
So, then she forgets, and everything goes back to normal…for her. But I am slow to engage, slow to warm back up…very cautious and tentative…defended even. Perhaps slow to forgive. Definitely slow to letitgo. Letting go involves such vulnerability. Exposing my underbelly again even though it’s all ripped up. Vulnerable enough to open up again and try. Try to connect with her. Try to enjoy her and this time we have together. Try to laugh at some of the irony…or just try to laugh at all.
When something upsets our dog, Abby, she has to stop and literally shake it off before she can keep walking. Abby is the smartest dog I’ve ever known and maybe she has the answer. Perhaps the answer to letting go is taking a moment to shake it off. Recognize something scary or painful happened, acknowledge the impact, allow myself to feel it, then shake it off and let it go. Don’t hang on or wonder “what if” just let that shit go. Shake it off and keep walking…keep engaging and try again. That’s what Abby does…she keeps going. She may move more slowly or cautiously at first, but pretty soon she’s prancing along again…like nothing ever happened. She is not a grudge holder. Abby knows how to let go. Maybe I can learn a lesson about letting go from her…I’m shaking already.
Because let’s be real, all that really matters is how we love people…because love wins…always.

