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

Music

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
memory

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

moments

The Purse of Wonder

My mom always had a large collection of purses. She and my dad traveled a lot and she was often in search of the best travel purse. Then, she would pick up purses in their different destinations or on the cruise ships. When we first moved her from her house, we brought a few of her purses with her. Over the last year, we have removed them so that she now has just one purse. She would lose things, like her keys or her lipstick or her wallet, and we would end up looking everywhere for them, including in all of the purses. She always wants a purse with her, but she really didn’t need several.

Mom, with purse, posing by the fall scene at her place.

So, now she has one, but it does have several compartments, so it still makes it interesting when she is looking for things. Only now, she will go to look for something and really have no idea what she is looking for in all of the compartments. So, we remind her what she is looking for and she continues. This sometimes goes on for quite some time.

The latest fun thing is that we never know what is going to be in the purse! Sometimes there are sticks that she picks up from outside, sometimes her change is loose all over her purse instead of being her wallet. Sometimes there is a toothbrush or an old treat from the vending machine. Recently, I looked in her purse to make sure she had sunglasses, as we were going outside, and there was a bra! As my sister pointed out, you really never do know when you might need an extra bra.

Mom with purse walking my dog by the woods

Yesterday, I went there and we took a longer walk. The weather had finally turned cooler and so I thought it would be great to go for a nice walk by the woods and the stream. I brought my dog and off we went. She was doing well, analyzing what the dog was thinking and feeling. We stopped by the main creek area for a bit and listened to the rippling of the water. The way back is mostly uphill and my mom started sweating. We stopped to rest and she opened her purse to find a tissue. She could not find one, so after a minute more we kept going, heading back to her place. Just as we approached the parking lot, she opened her purse again to look for a tissue. “Aha,” she said, “I found it.” I was feeling relieved and then surprised as she pulled a little Mickey Mouse out of her purse!

A tissue, aka Chef Mickey, emerges from the purse.

The purse of wonder had struck again! Who knew that Mickey had accompanied us on the walk. It is so hard to keep a straight face in those situations, but it is great to have moments that make me smile, even if I have to keep it on the inside.

caregivers · Personality

Doughnuts

My sister and I received calls in a very early morning hour last week from a CNA and then the head nurse at my mom’s place letting us know that she had to be sent to the hospital for what was later termed a “manic episode” with “aggressive behaviors”. After speaking with the CNA on duty, I got a pretty clear picture of what had happened and it was not pretty.

By the time my sister got to the hospital, my mom was calm, all the tests that they ran for a possible physical problem were negative, and my mom was ready to go. When she returned to her place, she ate breakfast, had no memory of anything that occurred, and ended up going on the bus for an outing!

My sister and I went out to get something to eat, some coffee to calm our nerves, and then some doughnuts – two dozen in fact. On our way back to the facility with our peace offering (the doughnuts), the humor made its way into our still somewhat-disbelieving minds. We imagined the conversations with the staff going something like this.

“So, you were woken up with a phone call from your staff at 4 a.m. because our mom was screaming and waking up the residents? We are so sorry. Have a doughnut.”

“You were hit over the head by our mom with a clipboard, of all things, as you tried to calm her down? Here, have a doughnut.”

”You were hit, bit, yelled at with really bad language, and almost had a plate thrown at you by our mom? Well, we got you a doughnut!”

Though we have seen our mom get angry and panicky, it is still very hard to imagine her in the state she was in and exhibiting these violent behaviors. There is a thought that she might not have slept and was scared by the night staff who she doesn’t really know. She could have also been hallucinating. We will probably never know.

Mom dramatically singing an ode to the trees as we took a walk on the day after the “incident”.

What was amazing was how the staff there took it in stride and did not seem too worried about it. As difficult as it is for us to understand, it is a common reality for them. We are so thankful for the night staff for doing their best to help our mom, enduring her wrath up to the point that they could.

After moving her three times, my sister and I still harbor the fear that she will need another move – although we don’t know where she would even go from here. None of us, including our mom, could take that. The staff was very reassuring that she is still fine there. Even so, several large pizzas may be showing up soon!

moments

Existing Outside of Time

What is life like when you exist outside of time? I wish that there was some way to ask my mother that. But, of course, she doesn’t know that is what is happening right now. Though time is marching forward and her disease is progressing in a linear fashion, there is nothing linear about her reality. It is more like loops – big loops back to her childhood, medium loops back to a few months ago, and mini loops back to a few minutes ago. These loops happen throughout each day and across days and weeks.

She is unsure where she is in time. In the span of a five-minute walk, she can be talking about her childhood and parents as if they are alive, to talking about her husband, wondering if he is alive, to needing to go to the store.

She is back to picking up sticks. She really loves nature. It continues to fascinate her. She is asking for more baskets, again, for her collection. She is back to wanting to live in an apartment. She wants to sell her books, or send them to her mother (which is new). She can’t believe this is her life. Everyone around her has “low mental functioning”. It is deja vu for us, with a little reverting to her childhood thrown in.

Thank goodness she didn’t take this one!

My brain is not use to a non-linear existence. It is not easy trying to keep up with where she is at in time, to know how to respond and where to steer the conversation. I think that it is why I leave from visits exhausted. I wonder if it is exhausting for her to be so many places in time every day.

Transitions

Brain Stimulation

Several years ago, my dad took my mom to a hospital in Boston to have repetitive transcranial magnetic stimulation (rTMS) on her brain.  From what he said, there were only a few places conducting this treatment around the world.  She wore a cap on her head and, as she did different activities on a tablet, the technicians would use magnetic fields to send small electrical impulses to different parts of her brain.

The treatment seemed to be a success.  Apparently, it is like bringing the person with Alzheimer’s disease back to where they were about three years prior, in terms of memory and cognition.  It can only take place within certain stages of the disease and it does have a limit on what it can do.  After my dad brought her back for a second treatment, it was determined that it did not achieve much success.

This is one of those things which I wished I had asked my dad more questions about.  I really am not sure why the second treatment did not work as well. I do not really know what the treatment did, exactly.  However, I do wonder if there have been studies that followed people who received this treatment.

 I find myself wondering if my mom is experiencing some negatives of the treatment now.  For instance, her short-term memory is gone, and she is going back into her childhood, so the disease is progressing, but there is part of her brain that is still very much aware.  She is very aware that she has been put in a place where she doesn’t want to be.  She still uses very large vocabulary that keeps fooling the staff.  After conversations with her myself, sometimes, I find myself thinking, yes, she should be in an apartment and traveling and doing all the things she wants to do.  And then, I am brought back to the reality of the situation.  She cannot go five miles in the car without getting agitated.  She does not know she takes medication.  She doesn’t know what took place five minutes prior to the moment. 

So, she still has ideas about what she would like to be doing and understanding of what her life was before, but she doesn’t understand her limitations that are keeping her from living the way she wants to be living.  I am not sure if this is very different from other people with Alzheimer’s, but I do know everywhere that she has been, the staff have let us know that she is very different from other people that have been in their care.  Could it be the brain stimulation?  If it is the case that it offers a downside further down the road for the person, would they or their caregivers still think it worth it to get three more years on the front end?

Never too cold for ice cream! Enjoying life on a trip to Disney World .

I guess with many treatments there are downsides. I know that my parents were able to keep traveling for a while and enjoying life, so it was probably worth having it done. We may be living the downside right now and just have to accept that these consequences were worth it! 

Here is a link to an article my dad had sent us in 2017 about rTMS.