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July 7, 2019

A Map to Ease the Journey of Dementia—a Bridge Too Far.

As I begin this article, it is 2:43 am on July 4, 2019.

My mother is being treated with morphine and Xanax administered by hospice.

I fully expect by the time I finish, her journey through dementia will finally be over.

In October of 2017, I wrote about the beginning of our mother’s journey in the article, “Dementia Takes us Piece by Piece, but this is the last Piece to Go.

The truth of that article was stronger than I knew, as her love for her children has remained present even when she didn’t know our faces. The truth for me today is that the dementia journey is a long one, and the bridge to transition is too far.

Ninety-six, ninety-six, ninety-six, ninety-six. The words have spilled out from her lips these last few months as a mantra without any known meaning. My sister and I have attempted levity: Remember the good old days when she said ninety-two, ninety-three, ninety-four? 

The cruelty in this example is we, her loved ones, witness the tangible progression of the disease of dementia. In the final stages, each visit revealed the disappearance of yet another piece from her mind. As the bridge comes into view, the pieces lost are even more measurable and obvious. Long gone are the concerns that maybe we were the ones losing our minds. No longer is confirmation necessary

During the last year, we took turns holding her hand and talking to her. She relaxed, appeared content, and in the beginning of the “96 phase,” she would respond confidently to a familiar and simple prompt like, Hi Mom, it’s so good to see you. Turning toward our voice to make eye contact, You too, babe came naturally with a pat of our hands. She was always a big patter.

Then, like a cloud cover, her mantra and distant gaze would return.

I don’t recall when she stopped saying my name. Names disappeared one by one. The shock of hearing her refer to her beloved Paul as “my husband” was another marked disappearance. There were times I knew from the piercing of my heart that she recognized me, but didn’t know who I was. She tried covering by saying, There’s a familiar face. There was an incident when my sister Cheryl drove quickly over to the facility because mother was asking for her. Upon her arrival, our mom didn’t know this Cheryl at all, but most likely was expecting a much younger version.

Our mother’s ability to communicate was shutting down, and it reminded me of the haunting parallels in the 1968 film “2001: A Space Odyssey.” The artificial intelligence controlling the ship was aware of its demise as its memory and logic panels were being methodically removed. The voice slows, slurs, and ultimately it resorts to singing a children’s song:

I’m afraid. I’m afraid, Dave. Dave, my mind is going. I can feel it…I’m a…fraid. 

We passed through her fearful phase and moved to a child-like state, one that brought her delights in simple pleasures.

Absent of the memory of her children, Mom looked to stuffed animals and a baby doll for love and affection and reassurance. She spoke to them, held them, lined them up on her walker, and strolled with them into the lunch room.

We were eventually compelled to purchase a duplicate of her favorite and then routinely exchange it for the freshly laundered twin. 

Until just a few weeks ago, our mom’s appetite remained surprisingly strong.

Each taste was a new experience, and so there was no point in visiting her during a meal time—she was too focused. We remarked that her favorite meal was second lunch. Glimpses of our younger mother’s self sparkled through the veil and brought smiles, smiles that we collected and pressed into the collection.

A good day. A song recalled. (She could sing along to many songs my sister played for her on the phone when held next to her ear.) I can still see her eyes dance as she wiggled her fingers, admiring a new manicure of garishly pink colored nails.

I flip through my phone of shared and snapped photos of these happy moments, thankful for their presence no matter how brief. The few remaining family members shared them back and forth through texts, with a common theme. How good she looked here. It was just a short time ago.

The last year involved two significant changes.

The first was in Mom. For the most part, she has been without anxiety, partly due to the Xanax, partly due to her inability to process what is happening. However, we have a few of her recorded phone calls from a time when she could use a phone where she was inconsolable—sobbing and pleading.

We also have recordings from her “Nanny-Cam.” We installed it in her room, fearful that she may fall or need assistance, as the staff can’t be with her every minute. We witnessed unexpected but welcomed kindness from the staff. We learned our mother, who was mobile then, spent a lot of time in the bathroom. UTIs are an ongoing concern, but so was Mom inexplicably shredding her Depends in the privacy of her bath.

More significantly, we witnessed restless late-night movements and bizarre conversations with the photographs on the wall. I would sigh and long for the days when I could take Mom to lunch to her favorite restaurant, even though she thought each time was her first. These difficult memories remind us that the rough mile in the road is behind us.

Second, we relocated my mom closer to my sister who could visit her more frequently. She did so faithfully, despite Mom’s inability to remember the quantity of visits. However, as I wrote in the last article, we visit mostly for us, or the mom we once knew. We also do it because a staff member who sees regular family interaction is more likely to be more attentive. Also, a staff who is aware of digital monitoring is more attentive as well.

Our family’s journey with dementia is almost over. Our mother will finally cross that bridge and find relief from a world that slowly disappeared around her. And we, her loved ones, her children, will eventually find peace in knowing that she is peaceful.

Dementia affects 1 in 10 over age 65, so chances are you have a loved one afflicted. If so, I am sorry. The anxiety is real and the journey long. But you are not alone and I offer you a map of sorts to ease the journey.  

Understand the condition as much as you can. 

Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” ~ Marie Curie

As quickly as you are able, know and remind yourself that your parent’s behaviors are happening more to them than by them. Your compassion will kick in, and trust me, they need your compassion. So read, read, read and talk to the experts.

Accept the diagnosis. Don’t be embarrassed to buy them a stuffed animal or a doll. Denying the condition or fighting with your family members and the support staff not only will fail to achieve a positive affect, but it causes everyone unnecessary stress. Forty percent of family caregivers report elevated anxiety. I can’t believe it’s not more. So, seek support and counseling, professional perhaps, but my sister and I were fortunate we had each other who were thankfully “on the same page.” 

Visit as much as you can. After everything, I am convinced that our mother—somewhere in there, or out there—knows and remembers our presence. It’s important to them, but it’s also necessary for yourselves. Additionally, as I mentioned before, your presence will raise the quality of the care your loved one receives even when you are not there.

Research and visit care facilities that specialize in memory care. They are not all created equal. Although it’s a common truth, “You get what you pay for,” the most expensive is not always the best. Tip: Research the facility’s history of complaints with the state.  

You won’t be the same person when it ends as when it began, but you can choose who you want to be during the journey. I suggest some simple goals like, I want to be kind. I want to be compassionate. I want to be forgiving. I want to be present. 

Remember this final truth: keep those moments your loved one shines through the disease in a physical, digital, or emotional scrapbook. As their life, memories, and mind slowly disappear, I maintain that love is indeed the last to go, and these reminders will fuel you to finish your journey in strength until those final steps over the bridge.

~

Note to readers: Mom passed away at 7:12 p.m. on July 4th, 2019, her personal day of freedom.

~

author: Greg Simmons

Image: Author's Own

Editor: Catherine Monkman

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littletldobson Jul 22, 2019 11:10am

So sorry for your loss and the terrible journey, my mum is also suffering and it is indeed the cruelest disease for all affected. Thanks for writing this.

Katy Brandes Jul 15, 2019 2:56pm

Thanks for this, Greg. It rips out our hearts to lose our moms one piece at a time, and I can’t say it will be better without her one day. I can say it gets less raw and a tiny bit more tolerable with time. The grief bursts come and go. Wishing you peace.

Linda Santhuff Jul 15, 2019 10:44am

Thank You for this honest heartfelt piece. The journey you and your family has been on is one that I understand far more than I’d ever wish anyone to know. My Mother’s bridge is on the horizon, she has many days that she expresses the desire to be on the far side, to be free of this prison she is still at times seems to know and feel trapped in. I so appreciate you sharing your story, this is a dark lonely road at times. May you and your family be bathed in Love, Light, and Peace.

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Greg Simmons

Greg Simmons is proud to be an Elephant Journal Academy graduate! Hopefully always on the path to knowledge and improvement.