Bragging Rights

Parents of disabled children … or any child that doesn’t fit the norm … rarely have opportunities to brag about their progeny. I’m grateful to have such an opportunity and I’m going to take it!

Anniversary

On July 1, 2023, Nicole celebrated her first anniversary in assisted living. I have gradually been giving her more responsibility for handling her affairs. I won’t be around forever for her to lean on.

She is stepping up to the plate!

• When the transportation arranged by her Medicare advantage plan failed to arrive in time to get her to her dentist appointment, she called the dentist and asked them to put her on their list in case of a cancellation.
• When they called with an opening, she took it.
• When she learned I had other plans at that time and couldn’t provide transportation, she arranged for the facility in which she lives to transport her.
• When she learned that I was being given incorrect information about her at Care Conferences, she asked to attend the next one. That resulted in the most productive meeting to date.
• When she fell and a goose egg appeared on her head, she acquiesced to her nurse’s urgings to go to the emergency room, even though she didn’t think she needed to.
• She called me about 9:30 in the evening from the emergency room to see if her facility had contacted me yet. She didn’t want me to worry.
• When I asked if she wanted me to come, she said, “There’s nothing for you to do.” I was grateful because I was already in my pajamas and had taken my nighttime sleep supplements. We stayed in touch by phone.
• She checked in with me after an hour in the waiting room … when a bed was finally open for her.
• She called about an hour later to let me know they were ready to do tests. She told me she’d call me in the morning with the results. Her facility had made arrangements for her to be transported back … arriving about 2 am. Happily, I was fast asleep.
• She called the next day to tell me they found nothing seriously wrong. Her ankle and big toe were her biggest concerns, and she had been able to walk to the bathroom without a lot of pain. She assured me she was fine.
• I breathed a sign of relief and told her how lucky she was to not have been seriously hurt and how proud I was of her for handling it all by herself.
• She declared, “I’m 52 and I should be able to handle these things myself.”

Venturing Forth

When Nicole lived with me, she spent most of her time in her room watching TV or playing on her iPad. I accepted that because social avoidance is a part of the disease. And we had vastly different interests. We did connect in the evenings over TV. We did have some programs we both enjoyed.

I found accepting her as she is made living together a lot easier for both of us. This is probably true in any relationship. But I make the mistake of having expectations in many of my relationships. That can be the kiss of death. ☹

When I had friends over, I sometimes insisted that Nicole join us. She reluctantly complied. And she seemed to enjoy my friends and our interactions. They actually valued her contributions to our discussions. Maybe a lot of her isolation was a result of “living with Mom!” That can’t be easy for any adult child, even when it’s the best option.

In her early weeks in assisted living, she continued the pattern she had adopted living with me. Gradually I heard her talk about other people … mostly those assigned to her table in the dining room. She frequently talked about Emily and Bill and what was going on in their lives.

Even though her TV programs are still the most important thing in her life, she gradually began participating in activities.

• She is always excited to show me her latest choices in nail polish after her weekly manicures.
• I sometimes hear about ice cream socials.
• She asked me to get her markers and masking tape. She began coloring the pictures supplied by the facility and decorating her room with them. She gave me one to post on my refrigerator.
• She sometimes talks about what’s going on with people living there.
• She heard about the Business Manager’s Bird-of-Paradise plant. Nicole told her she wanted to see it, visited her office, and spent some time chatting in the process.
• Recently, I’ve been hearing a LOT about Tracey … a woman who works the desk on weekends.
• And I’ve noticed her referring to the facility as “home.”

Uproar

Her facility changed owners. Before long, they changed TV providers … from cable to a satellite-based provider. The residents were in an uproar. Nicole grieved the loss of some of her favorite programs. I heard a LOT about that.

I suggested she start a petition. I didn’t think she’d take that seriously much less that she would actually do it. She told me she needed a legal pad to start the petition. I told her I’d bring her one.

She went to the business manager and told her about her plan to start a petition. The business manager said, “Hold off on that. We’re still in negotiations.”

Within days, the cable provider was reinstated. She texted excited … and they even had more channels than previously. She now had Hallmark … a favorite channel she’s done without since moving.

I texted back, “That’s because you residents let them know what you wanted! POWER TO THE PEOPLE!”

Best of All

Nicole asked the receptionist if the cable company would provide a list of the TV channels? The receptionist didn’t know. Nicole told her they needed at least one that could be posted near the elevator. She added, “It’s not so much for me. I can figure it out. But Emily needs to know the numbers of the channels.”

She advocated for another resident!

I WAS PROUD AS PUNCH and I let her know!

SURPRISE!

The Sunday I walked in to bring her the legal pad, I was greeted as never before. Nicole knew I was coming and stood in the lobby waiting for me. I headed for the sign-in desk when I heard the receptionist yell,

“WELCOME NICOLE’S MOTHER. I FEEL AS THOUGH I KNOW YOU … I’VE HEARD SO MUCH ABOUT YOU! … AND YOU’RE WEARING DANGLY EARRINGS JUST LIKE NICOLE ALWAYS DOES!”

 I smiled and added, “She gets it naturally.”

Before I left, I stopped at the desk and thanked Tracey for befriending Nicole.

She said, “I love talking with her. She brought her drawer full of earrings down last week to show them all to me. She socializing more. She’s like a whole new person.”

That was music to my ears.

Apparently, the family of other residents have noticed Nicole. One of them wants her to befriend her sister who just moved in because she thinks Nicole would be a good friend. Nicole doesn’t know when she was noticed or in what context.

She also has no idea the significance for me of hearing what a star she is becoming in her new home.

I tell her often how proud I am of her for all this and especially for handling as much of her needs as possible. That’s what I want her to remember about me when I’m gone … “Mom was proud of me.” I hope that is extra motivation, motivation being in short supply for people with Myotonic Muscular Dystrophy.

It feels so good to have something to brag about … and to know that her moving to assisted living was the right decision. I’m feeling very proud and grateful!

Photo by Positive Exposure