Help me Help others ….
Flash Back to 2014
I stood at the kitchen sink washing potatoes as Mom sat at the kitchen table watching Joey intently.
Me: Hey Buddy … how’s it going over there?
Joey: ok …..
Me: Need a hand?
Joey: nope ….
Me: (shaking off the last potato) Mom … how’s he’s doin’?
MIL: Good! … errrr I think … (chuckling lightly)
I looked over my shoulder at her and remember the great day we had together. It had been a long day, but nevertheless a great day. We started very early at Dr. VanDykes office for our intake, as part of the study Mom is in we periodically have long ‘intake’ visits. The office takes Mom’s vitals, weighing her and we update her long list of medications. Then they sweep her into a room for a series of questions and asking her to attempt simple tasks, I sit patiently in the waiting room with my laptop and cell phone and work. Then it’s my turn, I sit through a series of interviews, todays interviews were done by one of my favorite people, Martha.
Martha: How’s she doing Lisa?
Me: It’s been ok … she’s seemed to have plateaued? … is that possible?
Martha: Sure is …
Me: We had a great morning, she was up and ready to go when I got to the house. (chuckle) She even walked out to my car and said “I love this car, it is the best color!” …. Tuesday night when I picked her up at the firehouse and was walking out to the parking lot I was walking toward the car and had to redirect her to follow me … she didn’t know my car (shrugging). Today she knew the car and was a chatter box the entire ride from Durham here today.
Martha: hmmmm … (smiling and leaning forward just a bit) Treasure days like today …
Martha opened a file and took out a stack of papers. Admittedly, I adore Martha, but this part of the study is sometimes the hardest. I spend the better part of a half hour, answering questions and assessing Mom’s progression of this God-awful disease.
Martha: She can complete games and puzzles, well, somewhat well, with help, not at all?
Me: (I look down at the table top remembering the ‘crossword puzzle queen’ now only attempting word searches) Somewhat well? She won’t ask for help …
Martha: hmmm … (I see her glance back at another page) Is she still doing the word search and Sudoku?
Me: I don’t think Sudoko anymore … just word searches, and honestly those are a struggle.
The questions continue, Martha is preceptive as she sees my face fall with difficult answers she pauses and lets me collect myself. Her compassion, a warm squeeze of my hand and her smile keeps my spirits up. She even laughs with me when we I share a humorous story.
I return to the waiting room to find Mom ‘reading’ a magazine. I wish I knew what was happening in that once brilliant mind of hers. In the past, her chair would have a stack of read newspapers and books by its side always. She was like a sponge sucking up the words and knowledge.
Me: Hey there! Ready for some lunch before your infusion?
MIL: Sure! Where we off to?
Me: (looking back at Martha and smiling) How about Subway today? We’ll get you some fresh spinach on your sandwich!
MIL: Yum? (wrinkling her nose and looking at Martha) Did she really say spinach? Yuck!
Martha: (laughing) It’ll be good Rosemary … you’ll have fun!
MIL: yea, well that’s the truth … (wiggling her hips left to right and smiling with a mischievous face) This one and me we do have fun!
We exchange our goodbyes and wishes for a happy day. Mom and I continue our day lunch at Subway, then a 3-hour infusion back at the hospital, and a half hour follow up exam. We make our way into the lobby to wait for the valet to bring our car around I guide Mom to a series of chairs.
Me: Sit here Mom, I need to give the valet my ticket.
Me: We’ll pick up Joey on our way home and then go to our house for dinner … Franks got a firehouse thing tonight.
MIL: OK … (yawning and looking at my computer bag) You didn’t work today ….
Me: Yea I did … while we were at Dr. VanDykes and while you had your infusion and slept …. Hey! why are your yawning?! (laughing) You just had a 3-hour nap!
MIL: It’s hard work!
Me: (shaking my head) Oh Mom ….
The sun is lower in the sky, the days are getting shorter which means our moments of clarity are also shortening. As the sun escapes the sky often so does Mom … she seems to slip away with it too.
I busied myself in the kitchen while Mom asked Joey what he was doing.
Joey: (with his hand pushing his cheek into his eye, rolling his eyes) English homework, yuck!
MIL: I used to be a writer …. I loved English
I just about dropped the pot I was holding. Just the other night when I picked her up at the firehouse, I was reminiscing with her and I had to tell hershe was a writer once.
Me: Mom … (filling the pot with potatoes)
MIL: Hmmmm …
Me: (hauling pot onto the stove) I’ve been doing a little writing too …
Me: (now standing at her side I place my hand on her shoulder) Yea, I enjoy sharing our story …
MIL: (Turning and looking up at me) Us? You mean you and me?
Me: Yep … I love telling people about our adventures … (biting my bottom lip a bit) … and honestly how you and I are navigating this new life you’ve been handed.
MIL: New Life? (tilting her head)
Me: Remember? (gently tapping her forehead) This beautiful brain of yours seems to be short circuiting. That’s why we go once a month to Yale …
MIL: Oh, yeah … it’s called … (holding her forehead and squeezing her eyes shut tight) … what’s it called?
Me: Alzheimer’s … it’s called Alzheimer’s Mom …
MIL: … yes that’s it …
Me: So. Mom? …
Me: About my writing …
MIL: Oh yea! Let me hear about it …
Me: Well it involves you and I ….
MIL: Really (sitting back in her chair and smiling) … tell me.
I opened my laptop, opened my facebook page and started scrolling through my “Life with MIL” posts and reading them to her. The early ones are pretty funny, and she laughed along as I read them, then I read a more serious one, and I stopped and looked at her. There Mom sat staring at the kitchen table. I searched her face for some kind of answer on how she felt, but her face was unreadable.
Me: You ok?
MIL: uh huh …
Me: You sure?
MIL: Yes … I am. (She looked up and leaned in close to my face) … These are good … really good.
Me: But sometimes it’s not funny or pretty …
MIL: This thing I got (tapping her forehead) this … is …
MIL: Yes … others have it too right?
Me: Yea Mom … too many people have it, that’s why so many people can relate to our stories. Lots of people reach out to me and tell me our stories are comforting, they don’t feel alone and sometimes they find a different way to handle the disease.
MIL: hmmm ….
Me: hmmm what Ma?
MIL: (leaning close to me with determination and intensity in her eyes) Don’t stop, keep going … it may be the only way I can help others.
Me: That’s pretty brave Mom, we don’t know what the future holds.
MIL: no, I don’t … but I know this … I know you can help me help other people.
I reached across the table, I pulled her close and just held her for a moment. I sat back in my chair and looked across the kitchen table at Joey. He had abandoned the English assignment and was just watching us, I wondered what he thought of the last few years. He as well as Ashely have lost the grandmother they had grown to love so much. I was proud of both of them in how they handled this new reality of life with grandma. I tussled Joeys hair as I made my way back to the kitchen.
MIL: Yea …
Joey: Tell me a story ….
MIL: Hmmmm whadya want to hear?
Joey: I don’t know you choose …
I don’t remember what Mom told for a story that night, it probably was something about her father’s blacksmith shop. Memories of her childhood seemed to be popular at the time. I do remember standing in the kitchen listening to Mom talk and heeding Martha’s words ‘Treasure days like this’. That day was a treasure, for more than a fleeting moment I had Mom again. I often reflect back on that day, it was the day she urged me to continue telling our story. Remembering her insistence, the intensity and passion in her eyes, face and voice has helped me continue through this very difficult journey, and so I treasure that day.