No Expectations Is The Way To Go!!

It’s January 30th and I’m incredibly happy!! Usually by now many people have totally given up on their New Year’s resolutions or at least started to lose focus on them. My resolution this year was No Expectations. In my mind it’s a very appropriate resolution for anyone with a parent with dementia and an energetic 2 year old granddaughter. 

Thus far, it’s working out perfectly – better than I could have imagined. I get up each day, and just accept whatever comes!! When Kendal needed breathing treatments, I was worried, but I just jumped in and learned how to work the breathing machine. When I’ve taken Mom out this month, I’ve let whatever was going to happen happen. When Mom repeats things, talks loudly and gets scared, I don’t panic. I just think, No Expectations …. and it just works out. 

Yesterday, I became convinced that my resolution is really working on all levels. A routine trip to Walgreens for a prescription turned into a 2 hour trip to Mom’s group home and back to Walgreens because of a refill misunderstanding. Even worse, this all occurred during rush hour! In the past, a wasted trip combined WITH rush hour would have really upset me. But last night, I just turned up the radio and sang along with my favorite songs. 

Then there’s my book. Before January, when someone sent me an email or called me and said they were thinking about buying or recommending my book or having me speak at an event, I’d get so excited,almost bursting with anticipation. BUT then usually…. Nothing would come of it. Or people would tell me they’d write a review for me on Amazon, or let me know what they thought about the book, but didn’t follow through. It was hard to hear the word no, or worse, nothing at all. BUT when January rolled around, I asked myself why I became disappointed when things didn’t go the way I wanted regarding my book. 

The answer was easy. It’s because I felt that if EVERYONE didn’t have my book, then I was somehow letting Mom and the Alzheimer’s cause down. Turns out that couldn’t be further from the truth. If Mom could still FEEL proud of me, she absolutely would be. How do I know that? Because just like my New Year’s resolution, Mom never had expectations for Renee and I either. She never set the bar so high for us that we’d feel like failures if we didn’t achieve the highest of the high. She just wanted us to be good and kind people, and for anything above that, she was thrilled with our accomplishments. So, on January 1st, the book fell into the same category as everything else. No expectations….. And Guess what??? GREAT things have happened. It’s ALL Good!! Truth is, Mom would be thrilled that I even wrote a book about her, much less sold some. 

Now I have just one more thing on my mind and truthfully it’s hard not to have expectations about it. It’s Mom’s 85th birthday, coming up on February 18th. I’m planning a small gathering with light lunch and an awesome cake made by Kim. I’m inviting my cousins and my niece, and maybe Mom’s lifelong friend Mrs. Adams. BUT…… you know what’s coming…..what if it doesn’t go well? What if Mom doesn’t want to come to my house that day? What if she’s not having a good day? 

Recently Mom is really starting to have issues with her speech, and it’s more profound every time I see her. I wonder what people’s reaction to her will be on her birthday. When she speaks and reads now, it sounds as if she’s one of those computer voices. She pronounces every syllable in a very emphatic way. So an excerpt from our visit yesterday went something like this. “HELL-OOO LOR-RET-TAAA! THANK-KK YOOOOOOO-U FORRR COMM-INGGG TO SEEE ME. I AMMMMM READ-DINGG NOWW”. OK, so you get the picture. I have a video clip of Mom reading Paul’s book that I could upload, but it’s almost painful to watch. 

So here’s what I’ve decided while writing this. I’m going to have a short party with lunch, and cake, and we’ll take lots of pictures. And I’m going to force myself to have NO EXPECTATIONS on that day too. Just because it’s a milestone birthday doesn’t mean it has to be perfect, or that SHE has to be perfect. Whatever happens, happens and it will STILL be great simply because she’s reached a great milestone in her life!! So Mom, I’m looking forward to your birthday. You can read out loud, or talk as loudly as you want, and it will be just fine!! Love you Mom!!

Regressing and Progressing!

What a couple of weeks it’s been! 

We selected a new Family Practice doctor for Mom right here in Clinton. Tim and I did our usual teamwork to get Mom to the doctor. He picked her up, and I met them at the doctor’s office where I went first to fill out the forms. I learned a lot while we waited for the doctor to see us. I noticed right away, that we were serving as “entertainment” for the folks who were also in the waiting room. Mom and I looked at old family pics that I rotate on my phone, and we giggled and high-fived when she correctly identified family members. When she couldn’t remember who people were, I encouraged her anyway. People observing us quietly cheered or nodded when we cheered, and looked sad when Mom was confused. One woman even gave me a card and told me I could bring Mom in to get her hair and nails done for free!! Woo Hoo!!! 

Mom is still right on the money when it comes to the photos prior to 1950. She identified people she hadn’t previously been able to in pics from 1930. Cool!! On the downside, I also learned that Mom can no longer write her name. She can spell it out loud, and did so LOUDLY, but could write only the D and the O on the page. Waiting room observers looked really sad, BUT I said, “it’s ok, let’s finish it together, I finished the letters R I S, she approved my handwriting on the form and we both laughed!! I so love her sense of humor! In the pic below with my grandparents from 1944, Mom is in the back row on the right and is 15 years old. My aunt Diane isn’t in this pic as she was a surprise and wasn’t born until two years later in 1946. This is Mom’s favorite pic. 

Watching Mom struggle with writing the letters of her name reminded me of the time I spend drawing and coloring with Kendal. I always write her name and then sound it out for her before coloring it. I am having a ball choosing colors and scribbling on plain paper with Kendal, and she either approves or disapproves of what I put on the paper!! “Noooooooooooo GRAMMY!!!”, she says if I don’t select a color to her liking. Once again I’m reminded that in their lives, Mom is regressing and Kendal is progressing at lightning speed – Opposite ends of the spectrum! 

When It was our turn to see the doctor, she was as wonderful as I thought she’d be. She’s young, caring and very thorough. I learned something else very interesting that day. The buzz about my book is really getting around!! When the doctor complimented me on the great care I was providing for my Mom, I told her about the book, and said that she was going to fit into our medical team very well!! When she inquired more about our book, I signed a copy and gave it to her. She took one look at it and said “I’ve heard of this book!”. It could be because the rest of Mom’s medical team in Clinton have read it too. The doctor promised to read it and give me feedback. That was very exciting! At the end of the visit, I got the referral for a Clinton endicrinologist we needed for Mom’s thyroid medicine. Mission accomplished!! 

Then this week, our little Kendal had to go to the doctor for wheezing!! I was terrified!! She needed a breathing treatment but was terrified of the machine. Herb was a fabulous dad and as Kendal screamed her head off in fear, he came up with the idea of naming the breathing machine Henry so she’d calm down and accept the breathing treatment. Brilliant!!! I learned that sometimes it takes unconventional methods to calm a loved one down. I knew that I’d probably have to think quickly on my feet like Herb one day to calm Mom down too.  Mom doesn’t cry like Kendal when she’s afraid, but she does yell out, and is in just as much emotional pain. By yesterday when I went to Kim’s to learn how to operate the breathing machine, Kendal was an old pro at it, fully realizing that Henry the machine and the medicine in it was helping her to get well. 

I went to see Mom yesterday too. She was in the bathroom at the time I arrived, so I waited in her room for a minute. But I heard her talking loudly to herself saying her usual “I don’t know what I’m doing” over and over. But she sounded more afraid than usual. So I went to the bathroom door and knocked quietly and said “Hi Mom, I’ll be right here when you come out”. She said “I’ll be out in a minute”, but I could tell she didn’t recognize my voice. When she came out and saw me standing out in the hall, she threw her arms around me and said “Loretta, how did you know I needed you?”. My heart melted, and I said “i just knew”. 

We went to her room, and her new favorite book was on the bed. Written by my Rector and friend Paul Roberts Abernathy, the book is titled “For the Living of These Days” and is a book of his sermons. She still seemed a little afraid so to make conversation I asked Mom what she was reading. She read the title out loud of course, and she said the book was signed for her and that it “makes her feel better”. REALLY?? I wondered if she knew what she was saying. She proved she did by adding “OK, I have to read now”. I felt like it was a dismissal, so just to confirm I asked if she wanted me to sit with her while she read. “NO, I have my book, and I’m learning about living. You can go now”. ALLLLL Righty then!!!! LOL!! I was dismissed by a book, but excited too! It may have only been a momentary connection to reality, but if reading a sermon makes her feel better, I’m all for it!! I got my coat and waved goodbye but she was so busy reading she didn’t even look my way!! Love you Mom, see you next time!

New Year, New Triumphs!!

I’ve been so busy that I’ve neglected my blog!! So today, I finally write!!! So much has happened! We enjoyed a whirlwind of Holiday Happiness, and Firsts too!! We did everything possible over the holidays with Kendal – Gingerbread making, the Mormon Temple Lights, Zoo Lights, and ICE at the Gaylord… We bought only a few presents, only saw a few people, but had one of the best holiday seasons ever. We were there for Kendal’s first train ride at the Gaylord, and her first Carousel ride at the Zoo and watching her opening all of her presents. The joy on her face almost made me burst!! I think the rest of us almost burst with excitement too!! Our girl turned two, and started Montessori school too!! Time is flying by, but I’m going to enjoy every single moment. I had a milestone birthday too, turning 55 and celebrated for an entire weekend. I took a day off, pampered myself, and ate A LOT!!

But my Mom is the reason I’m writing today!! I had a wonderful time with her too this holiday season. We spent lots of time together Christmas Day, and New Year’s Day. I listened to her read from new her favorite book and Christmas present, “For the Living of These Days”, by Paul Roberts Abernathy. It’s a book of his sermons, many of which I helped select for publication.  Even though Mom read the same sermons over and over, the words were comforting to me, and I hope to her as well. We took her to see Christmas Lights at Watkins Park too, and she loved  seeing all of the wonderful animations in the park while riding in the car. I even took a chance and went to see her on my birthday weekend, even though doing so last year didn’t work out so well.

I was a great decision this year and she remembered me on my 55th birthday, though unfortunately not Tim. She remembered my name but not immediately how to spell it. Her caregiver Angelina was a true angel and gave Mom a card for her to sign for me, and she tried her absolute best to spell my name on the card. After we gave her the letters LOR, she was able to fill in the ETTA all by herself!! We cheered as if we had won the lottery!!!

I go into each and every experience with my mom with NO Expectations!! So I really cherished every moment with her, just as I’ve relished every moment with Kendal!! I cheer as loudly for my Mom as I cheer for Kendal whenever she does something awesome, even if it’s the simplest thing. In spite of all the great memories we made over the last six weeks, I didn’t feel compelled to write much about it until today after reading one of Kim’s Facebook posts! It got my attention right away. It was a photo of two women, one seemingly much younger than the other. The I read the words that went with the photo, a letter from a mother to her daughter. Stunning!!! I took hours before I could make a somewhat coherent comment on Facebook! I wonder what my Mom would have said if she had ever written me a letter. I hope that she would say that I’ve done the best job I can to fulfill all her desires and to treat her with the utmost dignity. She deserves that and so much MORE. I love you, my awesome Mom!!

Rather than describe the photo and letter, I share it below!

From the album: Timeline Photos

By AARP

My dear girl, the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through. If when we talk, I repeat the same thing a thousand times, don’t interrupt to say: “You said the same thing a minute ago”… Just listen, please. Try to remember the times when you were little and I would read the same story night after night until you would fall asleep.When I don’t want to take a bath, don’t be mad and don’t embarrass me. Remember when I had to run after you making excuses and trying to get you to take a shower when you were just a girl?

When you see how ignorant I am when it comes to new technology, give me the time to learn and don’t look at me that way … remember, honey, I patiently taught you how to do many things like eating appropriately, getting dressed, combing your hair and dealing with life’s issues every day… the day you see I’m getting old, I ask you to please be patient, but most of all, try to understand what I’m going through.If I occasionally lose track of what we’re talking about, give me the time to remember, and if I can’t, don’t be nervous, impatient or arrogant. Just know in your heart that the most important thing for me is to be with you.

And when my old, tired legs don’t let me move as quickly as before, give me your hand the same way that I offered mine to you when you first walked. When those days come, don’t feel sad… just be with me, and understand me while I get to the end of my life with love. I’ll cherish and thank you for the gift of time and joy we shared. With a big smile and the huge love I’ve always had for you, I just want to say, I love you … my darling daughter.

Original text in Spanish and photo by Guillermo Peña.
Translation to English by Sergio Cadena