memory · Personality · Transitions

Losing a Person

I was very fortunate to be able to spend some time at the beach last week. As my daughter and her friend ran around taking pictures of each other and the birds, I found myself staring out at the sea and moving my fingers through the soft, cool sand. As I looked at the sand falling through my fingers, I had two thoughts. This is what it might feel like for my mom as her memories and cognition come and then slowly fall through the folds of her brain away again. This is also what I feel is happening to my grasp on my mom. She is there and then she is gone, falling through my fingers.

We have been losing my mom for quite a while now, but it has entered a new stage. She recently had to go on additional medication for anxiety and behavior, and she is also up a lot of the night now walking around, so I am not sure if these are contributing factors. What I do know is that her expression is blank much of the time. She does not immediately react to seeing us as she did even a month ago. She looks at us for a bit and then at some point she will say that she is glad to see us.

She does not talk much and only occasionally starts a conversation. She is saying some interesting things, letting us know she is losing her understanding of my sister and me. As we were sitting outside a few weeks ago when it was warm in the sun, out of the silence she looks at me, smiles, and takes my hand. “You are my friend,” she said, “my best friend.” I will take it! When I was leaving later, a nurse asked my mom if she had a good visit with her daughter. My mom looked at me blankly as said, “I don’t know, did I?” I said, “Yes, mom, you did.” She asked my sister, as they were resting together in bed if her mother would be worried about where she was. “No,” my sister said, “she is not worried at all.”

“You are my best friend.” she said to me during this visit.

We had learned from the book, Creating Moments of Joy, by Jolene Brackey, that at some point it is good for us to start calling our mom by her name and not “mom”. I am beginning to think that this might be the time. It takes away any confusion she might have of seeing me and not understanding that I could be her daughter, because at that moment her daughter is five years old, or not even in existence. Not knowing where she is in her mind, it provides a clean slate. She still knows that she loves us and that we love and care about her, even if she doesn’t completely understand the relationship.

My sister and I had a Thanksgiving meal with her at her place a week before Thanksgiving. I got there a bit early and they were still setting up. My mom was actually helping to put menus on the tables. We sat down at a table to chat a bit before the crowds started coming. She looked around and said, “I don’t know where my husband is. I tend to lose him during the day.” “Oh,” I said, “and what about at night?” She responded, “Oh, he is there at night.” She seems so alone, within herself, that if she feels that my dad is there with her, it is a comforting thought! The crowds and music were a bit too much for her, so after she had a bit of turkey, we took her back to her room. It was the first time that we had been there in the evening in a while and we could see the anxiety ramp up. She became very confused about this being the same place where she stayed each day.

Thanksgiving Dinner

We lost the person my mom was, her personality and her intelligence, years ago. Now, we are losing her as a person. She is on her way to joining the others living with her who walk or roll around in their wheelchairs aimlessly, lost within themselves. In a sense we were looking to this time as one that would be easier because she would not be constantly trying to make sense of her loss of abilities. That is the case most of the time now. However, she still has the fear and confusion that requires reassurance, and I am guessing that will continue. It is heartbreaking to think how lost she feels most of the time. I know that, even if I were with her everyday, I could not take that feeling from her – the feeling of losing one’s self.

In that shoreless ocean,
At thy silently listening smile my songs would swell
in melodies,
Free as waves, free from all bondage of words.

Is the time not come yet?
Are there works still to do?
Lo, the evening has come down upon the shore
And in the fading light the seabirds come flying to their nests.

Who knows when the chains will be off,
And the boat, like the last glimmer of sunset,
Vanish into the night?

excerpt from “Sail Away” by Rabindranath Tagore
Activity · memory · purpose


My mom has always insisted that she cannot carry a tune. She loved to sing, but would restrain herself around others because she didn’t want to embarrass herself. My sister and I have fond memories of her singing and dancing around the living room to some of her favorite records, be it one of literally every Johnny Mathis record ever made, a Barbara Streisand album, or a Broadway show album. She also knew the lyrics to all of the songs on these albums and for most of the radio songs she grew up hearing.

It seems to be a well-known fact that music memory seems to stay with people who have dementia. There is so much information and programs that support this, which a Google search will reveal. Some examples are a local Music and Memory program provided by JF&CS, the Alzheimer’s Association’s information center, or this clinical research article from Brain: Journal of Neurology.

I see it with my mom as well. Music moves her. She remembers the words to the songs and she just has to move when she hears them. She has built up quite the dancing reputation at all of the facilities where she has been. She kicks off her shoes (much to the worry of the CNAs) and just goes. She danced for two hours straight at my daughter’s Bat Mitzvah last year! The joy exudes from every pore and she seems somehow connected to life once again.

Still going at the Bat Mitzvah…

I had the good fortune of being told about a concert that was happening last weekend by the Michael O’Neal Singers where a piece called Alzheimer’s Stories, composed by Robert S. Cohen, was having its Georgia premiere. The piece was commissioned in 2008 by a choral singer in the Susquehanna Valley Chorale, in Lewisburg, PA, who lost both of his parents to Alzheimer’s disease. The work included stories from members of the Chorale. At this presentation of the piece, the Michael O’Neal Singers brought in Tom Key, the artistic director of Theatrical Outfit, to read stories of Alzheimer’s from members of this choir in between the songs.

The Alzheimer’s Stories piece includes three parts: The Numbers, The Stories, and For the Caregivers. It is written for two soloists, and ensemble and a chorus, The first movement focuses on the discovery of the disease by Dr. Alois Alzheimer in 1901 and the statistics that have been gathered  since that time. The movement included stories of people with the disease and their memories that they kept repeating. The last movement is focused on the pain for the caregiver, but also the hope that comes from the people with the disease themselves. A patient at a nursing home asked a caregiver to sing and when asked what to sing, the patient said, “sing anything”.

Find those you love in the dark and light. Help them through the days and nights. Keep faith. They sense what they cannot show. Love and music are the last things to go. Sing anything.

Alzheimer’s Stories, libretto by Herschel Garfein; composer Robert S. Cohen

Catching Alzheimer’s

I know that there is a hereditary component to Alzheimer’s Disease. However, sometimes I think it is like an airborne virus that can be caught just by being in proximity.

We all have a lot going on and so many details to remember in our busy lives, so we do forget things here and there. I get that. When I am with my mom, however, I feel like my brain becomes like jelly. There is the idea that we enter into their world and maybe that is part of it. But why does that happen? Why can I suddenly not remember the words “vending machine”? She has one at her place and we are always making sure she has dollars or coins for it, so it comes up each visit. I find myself saying things like, “Here are some dollar bills for the…you know…thing where you get snacks.”

Visiting the vending machine

When I take her out, I am constantly readjusting our itinerary. It is good that she never remembers the original one, so she is not disappointed! I will tell her we are going to do one or two things, like go to a store, get ice cream, take a walk. Once we are on our way, I realize that I have totally failed to manage the time and we end up doing less or something all together different. Okay, anyone who knows me knows that time-management is not my strong suit, but it gets far worse when I am with my mom. Maybe that existing outside of time thing is contagious, too!

Of course, I always have the worry that I am getting the disease myself. I wonder if my forgetfulness is from being around her or because of the disease emerging. Sometimes, I feel like I am not far behind her. The, I will visit, and realize I am nowhere near where she is! On my last visit, she was lying in bed looking tired. I asked her how she was feeling. “I am fine,” she said calmly, “but it is really annoying when the birds with claws start to come at me. Of course they would never hurt me, but it is just annoying.” That is when I know, that whatever I am experiencing is nothing like her reality. Hopefully, it continues to stay that way for me or a cure is discovered before it gets to that point. In the meantime, I think that I need to start liking ice cream. It seems to be a constant source of happiness for those with dementia. I know that it is for her!

Mom enjoying her daily ice cream