The Continuing Education of the “New Normal”

The two hour drive from D.C. to Berkeley Springs gives me time to build my courage on the way there. I give myself a pep talks. Visits are difficult. They are incredibly emotional. Mom’s disease has stolen her, and I struggle with it at times.

Every mom visit is something new. She is talking less. She is less steady on her feet. She engages in eye contact in shorter intervals and keeps her head down. I consider this the continuing education of dementia.

Dementia is a horribly cruel disease. An easy fact to comprehend, and an excruciating fact to live.

Part of this education is physical and mental and learning the ever-changing capabilities of my mother. They seem to ebb and flow, continually decreasing little by little. These new levels of decline are what we call the new normal.

Part of this education is emotional and learning to accept watching your mother slowly disappear before your eyes. She lost her ability to engage in conversation, to feed herself, etc…. I remind myself of this to and from Berkeley Springs every visit. I am rational. I know this will never get better. I accept that. Doesn’t make it any less difficult.

Sunday’s visit was a new normal. Sitting down in the chair beside her wheelchair I smile and offer my ceremonial “Hi Mom!”

She stared at me for a little bit. It felt like a long stare. Silence feels heavy in those moments.

“Hi Mom.” Her response came out muffled and slightly slurred.

“I’m not Mom. What’s my name?” I am trying to keep smiling and sound upbeat.

She stared at me for a while. Her eyes are beautifully expressive. She stared and said nothing. She genuinely didn’t know who I was.

This didn’t feel like a temporary slip of the memory. She has confused me with someone before. I was Billy for a while.

There was a chunk of time after I came home from Liberia that she called me Billy. It lasted a few months. She had a brother named Billy. We’re both tall. Had beards. Handsome with charming smiles. I was Billy for a while but that passed and I became Joey again.

“I’m not Mom. What’s my name?” My second, third, fourth, and fifth attempt over the next hour come out flat, and like a whisper.

She’ll stare at me for about 30 seconds to a few minutes, then eventually lose interest and look away.

Over the next 45 minutes we periodically look at pictures of Matt and me, playing the game of pointing and asking “Who’s this?”

Matt is identified each time. With me there is silence. She stares at me, deeply, then looks away as if the question times out.

She has struggled to remember my name for about a two months. After a while she rattles it off. No harm no foul, and I think nothing of it. This, however, is different. She has no idea who I am.

The two hour drive from Berkeley Springs to DC gives the time to continue my emotional education on the way home. There is a new normal. I’m not her Joey DeMarco anymore. I’m not even Billy. I have become the polite stranger that comes to visit. I wasn’t ready for this part yet.

Matt is now the last man standing.

9 comments on “The Continuing Education of the “New Normal”

  1. Lori says:

    Sorry Joey! I know how hard this is! Just keep remembering How amazing she was when you were younger and that this is your mom and it is not your mom. Your mom would never forget you. But i know how much it sucks when she remembers someone else and not you. Love you!

  2. Shar Myers says:

    I, along with my three brothers, have walked the path you’re on right now. It is very, very difficult, to say the least. My heart goes out to both you and Matt. God bless you, Matt, and your Mother.

  3. Jan Flora says:

    You and Matt are the most awesome sons in the history of the whole world. My heart goes out to you guys so bad. Your mom is the most lucky mom in the whole world to have such amazing children. Giant hugs to all of you. And enormous hugs to Kathy for raising such amazing kids.

  4. mymomkathy says:

    I love you Joey. Thanks for continuing to be there for her. See you this weekend. ❤️

  5. Stacey Bryan says:

    My heart goes out to you……Sending you love.

  6. bobby stuart says:

    Keep your faith with that will give you strength– God bless you

  7. Nester, Brad (BW) says:

    Joey,

    This is hard to understand and deal with but remember her and be there it will help you when she is gone. I lost dad Sept 1,2014 and I knew I had done all I could and it help me get through the pain and loss of my dad but good memories will carry on. He had dementia also.

  8. Sing-Sing says:

    I don’t have words for this comment, Joey. Thinking of you. Sing-Sing

  9. Yvonne Christian says:

    I’m sooo sorry Joey!! My heart breaks every time I log in to see any new posts or check in on all of you. I know this must be terribly hurtful to you, but although you see your mom, the “Mom” you carry around in your precious memories is no longer there. But please be confident that the “Mom” you know does in fact know you and carries you in her heart, even though she may not be able to verbalize that to you right now. I completely agree with Jan Flora, your mom raised 2 amazing men and she is blessed beyond measure to have the 2 of you to care for her and be with her along this journey. These will be memories you will always treasure and like Brad said, help you through even more difficult days to come. I love you all and keep you in my prayers and always close to my heart.

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