The Long Good-Bye

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou 

 But what happens if they forget who you are entirely? What if they forget that you ever even existed?

A few days ago was the anniversary of my dad’s passing. He died 11 years ago from complications due to Parkison’s disease. This disease also affected his brain, so he experienced bouts of dementia as well. My mom passed away in 2021 from Alzheimer’s disease and then my mother-in-law in 2023 from dementia. Over the course of a long, harrowing decade, I believe I learned, the hard way, just how poignant and powerful the word in Maya Angelou’s quote truly is – and that is “feel.”

It’s been my experience that the beginning stages of the forgetful years aren’t so bad. There is a lot of frustration as one realizes that their memory is going. I can attest to this even at this somewhat “healthy” stage in my life –  forgetting why I went into a room or wondering where my phone is when it’s clearly in my hand, CAN be a bit frustrating. Now imagine forgetting your loved one’s names and how they are even related to you. The decline can be rapid or in my mom’s case, a long one. Seven years. She had such an awareness of it in the beginning though, and an acceptance that I found so courageous. We would be at church or out shopping and run into people who she had known for years. Being the confident, intelligent, articulate woman I’d looked up to my whole life, it didn’t surprise me when she’d politely say, “Forgive me if I don’t know who are, there’s something wrong with my brain.” I feel like it took us, her family, to accept what was happening to her harder than it did her. After a while we learned to appreciate and celebrate her good days and tried to find humor to lighten the dark days. Sometimes her clarity would go in and out like a light switch within the same day. Like when she had lunch with my daughter and asked her all of the normal questions you’d ask a teenager in high school – “where do you want to go to college, do you have a boyfriend, what’s the name of that play you’re in again…” Then 10 minutes later followed up with, “So, are you married?” Just like that, something turned the switch off. It was alarming at first, bizarre at times, but we eventually became used to it and found ways of bringing her back.

After a few years, her disease progressed and personal safety, personal hygiene, and a plethora of other things became challenges. People with Alzheimer’s and dementia get confused about what’s safe to eat, where it’s safe to go, very much like a toddler who requires constant monitoring. Many of my friends have asked me how and when do you know that extra care is needed. I always say that it’s similar to knowing when your baby is or isn’t ready for table food or like climbing up the stairs. You just know by watching them intently. I’ll never forget when I found my mom in her kitchen eating pretzels with milk in a bowl. I was taken back needless to say and said, “Mom, that’s not cereal, it’s pretzels.” She brushed me off, took another bite, and said, “What? It’s good.” Red flag. That was a sign to start paying attention to what she ate. Although I was happy, and equally disgusted, that she was at least enjoying her breakfast.

 Caring for someone with Alzheimer’s is all about keeping their dignity intact, for it is what I imagine to be a soul crushing experience… losing oneself. But it is also a lesson in humility for the family as well. There comes a point in the progression when you have to stop trying to make them remember you. You have to stop asking them if they know who you are and accept the fact that they don’t. You are saving their dignity by denying your ego. You have to accept that you are forgotten and are now simply a kind and loving person visiting them and THAT’s what makes them feel good. And that is all they need in the moment because they now only live in the moment. The past doesn’t exist to them, nor does the future.

When this realization sets in there is simultaneous grieving. Grief that must be experienced in order for acceptance to occur. I can’t pinpoint the year, day, or moment when I knew we had lost her, but I do remember the sadness I felt. I think it happened gradually over a long period of time. I remember feeling like I was saying good-bye to her every time I saw her. The person I knew and loved and who loved me wasn’t there anymore to talk to or get advice from. So, we had to find creative ways to help us stay connected to her and ways for her to stay connected with herself.

My mom had a baby doll that she loved to rock back and forth and sing to. Baby dolls are often recommended to Alzheimer’s patients because it bolsters in them the one thing that this horrible disease cannot take – “the feels.” I believe an innate sense of love and nurturing stays within us even after all of our other faculties are gone. Babies bring about feelings of innocence, security, warmth, and that is so healing to someone who has lost everything else. My mom also loved music and dancing. My sister had her dancing up until the day she couldn’t walk anymore and we had her favorite songs playing up until her last moments of life. She may not have known who we were, but we did everything we could to make her feel good up until our final good-bye. All five of us children were there, lifting her up in prayer and love as she took her last breath here on earth.

I like to think she got her memory back in heaven and those seven years, as painful as they were, are remembered by her. She could remember two things that came out of those seven years. One, that pretzels do not in fact taste good with milk. 😉 And two, that she was loved so very much by her children, their spouses, 12 grandchildren, her sister who cared for her, and her caregiver who was an absolute angel on Earth. If all she remembers is that, then I guess Maya Angelou is correct… it’s the feelings that will never be forgotten