And the Winner Is……!!

ALL of us!!! How do we all win?? We are winners because February had been quite the month for pushing the horror of Alzheimer’s Disease into the forefront of everyone’s hearts and minds!!! We win if we all keep talking about it, and planning for how we can end this disease by 2020.

This Month of Winning began on Feb 7th, with Legendary Glen Campbell winning the Grammy Award for Best Country Song of the Year for the song he wrote about his journey with Alzheimer’s. It’s appropriately titled “I’m Not Gonna Miss You” and is the theme song from the Documentary about his final concert tour after his Alzheimer’s diagnosis. I’ve not seen the movie yet, but those of us who were in attendance at the Alzheimer’s Summit in DC this past September met Glen’s wife and saw the trailer of the movie. It was incredibly emotional as you can imagine.

Then last week, Leeza Gibbons, the hard-working advocate for Alzheimer’s in honor of her mother won the top prize on the TV show Celebrity Apprentice. She won $714,000 to open Leeza’s Connection in Columbia, SC that among other things helps caregivers of loved ones with Alzheimer’s. I honestly had never seen the show but began following it when I learned she would be on and the charity she had selected. I cheered and cheered when she won along with millions of others who are supporting those impacted by this disease.

Finally, last night our prayers were answered when Julianne Moore won the Oscar for Best Actress for the movie “Still Alice” about a woman with Early-onset Alzheimer’s. I plan to see the movie soon, but honestly I’m still trying to work my way up to it!! I’m thinking it will require lots of Kleenex!!

We also pray for more funding, for research to find a cure and to help caregivers care for their loved ones if they have to give up their jobs to provide care. This is the most vocal and tuned-in to any cause I’ve been involved with in my entire life. Seeing these three events occur this month and bringing Alzheimer’s disease out of the shadows is inspiring!!

Those of us who have loved ones impacted by this disease witness every day the loss of the person we used to know. And It’s heartbreaking!! But we’ve been cheering a lot this month and I’m sure we’d all say that we believe our loved ones deserve their own special “Oscar” for playing characters in their own real-life movie they never agreed to star in. Even though she no longer knows me, I would hands down give my Mom the Academy Award for her performance in “Best Mom Ever!” While the movie isn’t coming to a theater near you, I can still watch my “old Mom” any time I want just by pressing play on my phone! She won’t remember the movie clips I show her, but I can still remember for the both of us! Here’s to you Mom – you get a standing ovation!!

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That’s why they call them Depends!

If you’ve read the last chapter in my book, you remember that one of my concerns was what it would be like for us when the time came for Mom to transition from underwear to Depends…..

We’re about to find out. On Mom’s 86th birthday yesterday, I brought her first package of Depends. For the past couple of weeks Mom’s had a couple of accidents, and the clever woman that she is, she thought she’d “fix” the accident issue by hiding her soiled underwear anywhere she think of to put them. Out of sight out of mind right????? She’s been walking around “free”, rationalizing that if you aren’t wearing underwear you can’t have accidents… Hmmm, I can get that…

So after the birthday cards and presents were opened, I explained to Mom that she’s going to be wearing a different type of “pull up” underwear called Depends and that now there won’t be any problem or cleanup if she can’t make it to the bathroom in time.

She thought for a moment and then said “well you know I only wear white underwear so they have to be white”. I assured her that Depends come in white. “Then I guess it will be ok” she said.

A minute later she asked if I wore Depends. I said I didn’t wear them because I could still make it to the bathroom in time. And then making a connection I didn’t see coming she said “I Depend on you and you take care of me!” Wow!! I said “yes and I’ll always take care of you. And when I’m not here to help you in the bathroom, you’ll have your pull up underwear.”

“I know”, she said “that’s why they call them Depends!” WOW!! There are so many moments with this horrible disease that she “gets it” and this was one of them. Still fiercely independent though, she then declared “I’m going to the bathroom now, BY MYSELF!” I promised her that I’d wait until she returned and she happily left me sitting in her room. As Mom walked away, I thought instantly of my three year old granddaughter Kendal who when asked if she wants help in the bathroom typically responds “No I can do it BY MYSELF!”

At opposite ends of the age spectrum, Mom and Kendal have two very important things in common. They are two of the most important people in my life, AND they want to have the freedom to Depend on themselves, and we have to let them, as long as it’s safe for them to do so. Love me some Mom and Kendal and all the lessons I learn from them.

Remember that I Love You!

On this Valentine’s Day, I remember ALL of the people I love and those who have brought love to my life.I love my Mom more than words and I’m blessed to love and be loved by Tim, Kim and Kendal and many others too.

Tim and I text daily while we’re working and end each text with “love you”, and this week I sent a text to Kim that said “I just want you to know I love you”. You never know when your last day on this earth will be, so I believe you can never say “I love you” enough. We end every visit and conversation with Kendal, with “I love you” and now that she can say it back, it lifts us up, no matter what’s going on in our lives!!

This week, I’ve shared a lot of love with my friends too. I spoke at length by phone to Linda and to Kris, the women who have been a part of my life for more than 25 years. Our conversations and laughter were as real as it gets, and they lifted me up!

I also spent a lot of time with Mom this week. We talked about plans for her 86th birthday coming up next week, a date she proudly remembers. “I was born on February 18th, 1929!” she proclaimed repeatedly during our visits. I asked her what kind of birthday cake she wanted and her response was “any cake”!

Then as I prepared to leave, I said “I love you Mom”. All of a sudden her smile faded and she looked afraid. I wasn’t sure what was wrong, but then she said, “I don’t know the words!” and was near tears. She’s never said that before, but I realized she didn’t remember what to say to me in response. My heart sank and I went over to her and held her hands. “It’s ok” I reassured her, “I remember that you love me”. Mom said “OK, you remember” and without even taking a breath she added “Can I have my cake?”. I wasn’t upset at all that she remembered how to ask for cake and but not how to say she loved me. I wasn’t upset because her smile was back and we laughed and hugged with such joy.

In that moment, I felt as if I had lifted Mom up, just as she had done so many times for me. I decided that in addition to Happy Birthday” on her cake next week I’m also going to add “I love you” just so she can know it for that moment.

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On this Valentine’s Day, lift someone up by telling or showing them how much you love them. And it’s ok if they can’t say it back.

Time Flies When You’re Having Fun With A Purpose!

Two years ago this week, “Being My Mom’s Mom” was published! The incredibl blessings that have come my way as I’ve spoken around the country about the devastation of Dementia on individuals and families are too numerous to count. I’m thankful that I’ve had the presence of mind to document all the presentations and book signings I’ve been honored to give, and I’ve taken many photos along the way capturing many of the amazing people I’ve met. I’ve made new friends and lobbied for funds on Capitol Hill. I learn everything I can about this disease and have shared laughter and tears with those my words have touched.

This past five weeks have been especially exceptional as I’ve had two firsts on my “book road tour”. On January 10th I spoke in Culpepper VA. A reporter came to take photos for the newspaper, but ended up staying for my entire presentation. The several page article she published about Mom and me and the book was incredible!

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Then this past Saturday, February 7th, I returned to Charlottesville, VA a popular place for my book tour. The event was called Empowering Caregivers: African-Americans and Alzheimer’s Disease. It was great to give this presentation during African-American History Month!! The other “first” occurred when the press arrived to take photos and get a few sound bites. I had just finished my presentation, so the reporter asked to interview me!! It was exhilarating to tell our nine year story, just a couple of weeks shy of Mom’s 86th birthday!!

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I know Mom would be so proud that I’m out there sharing as much information and support as I can through our story. As my calendar for this spring is filling up quickly, here’s hoping for more “firsts” on the road. I’m praying that we will soon be able to celebrate a cure for this heartbreaking disease, but until then, I’ll be out there with all the love I can muster meeting, greeting, and speaking! Love you Mom!! This is all for you!