Tag Archives: #endalz

Some one I love is living with Alzheimer’s

I got to spend time with my mamala for her birthday. She is wonderful and she is perfect. And she is worried and fearful that something may actually be wrong, or maybe people just think something is wrong and she is perfectly fine. Either way, she is bothered.

I wasn’t able to make her laugh as much this visit. Making her laugh has been my focus for the past few years, because it is such good medicine. We laughed this visit, but less. If I’m wry or sarcastic, it’s totally lost on her now. I have to be very gentle with teasing or she might think I’m being mean.

And then there was the coffee. She and my dad make half-caf, so when I visit, I always have to bring my own high-powered coffee. For the past couple of years, she had taken to grabbing my coffee, cup after cup every morning, and “doctoring it up” the way she likes: lots of artificial sweetener and a generous swish of milk to lighten it up.  I’d sometimes have to make coffee 4 times just to get to enjoy a cup of straight black before she got to it and thought it was hers. It drove me crazy.

But this visit, she never reached for my cup. She didn’t even try. She waited for me to bring hers to her, and then we both had our coffee, the way we each liked it.

You may not think that is a big deal, but I see her changing, backing away, noticing less each time. She is getting smaller, not just physically, but in the way she occupies the atmosphere. I am mourning the parts of her I will never see again. But wait…for a flash, for a split second, there it is again…but then gone.

It really is the long goodbye.

mom and dog 6.5.16 small

She asked me to teach her to use the TV control. We worked and worked on it. She used to be the techie in the family, she was the one who would hook up the TV to the VCR to the DVD player and whatever else or call Dave for computer help and she’d figure it out. It’s gone now. After 15 minutes, she still could not retain that the on-off button was top, right.

I used to be able to do this. What in the world is wrong with me? Why can’t I do this anymore? It’s like I am going backwards or something,” she kept saying to me.

It’s the same question she asked about the washer and dryer and her CD player and the telephone. She doesn’t even ask about the gas stove. The microwave is starting to become mysterious, now. Sometimes you put your coffee in and it comes out hot and other times, it doesn’t. Why is that, she is wondering?

I told her gently, very gently. Yes. These medicines are because you were diagnosed with Alzheimer’s. Yes, your memory problems are part of Alzheimer’s. Do you know very much about that?

It perturbed her. “You mean that is what they are saying I have? That is why they keep giving me these pills?!” as if a diagnosis is an accusation of some sort. She doesn’t like it. But I know she won’t recall it anyway. Tomorrow, she’ll wonder why she “keeps going backwards,” remembering just enough to know she is losing something…

But I told her that she is doing fine, just fine. And then I promised her I would remember for her, so she shouldn’t worry. And she cried. She just fell into my arms and wept.

And I assured her that love isn’t a memory that can be forgotten, that it will always stay up to date, so we would just keep on loving each other. Every little thing will be alright, mamala….
And I just held her for a while.

mom and bogey 6.16 small

—————–xoxoxo——————

You can learn more about Alzheimer’s at www.alz.org. There are articles about the signs and symptoms and great resources for caretakers. They remind us that everyone with a brain is at risk for this. And I am passionate about raising awareness because this woman, my sweet mom, is the last person on earth who would deserve to be fighting this battle, but Alzheimer’s doesn’t care. So I hope we can find a cure so my own children and theirs are not left watching the pieces of the people they love fall away, and are not left holding the bag as this insidious disease ravages our nation and the world.

Alzheimer’s is the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. – alz.org/facts

#endalz #thelonggoodbye #alzheimers #igopurplefor my mamala…

My Memory-Keeper is Losing Hers…

Sometimes I feel sorry for myself about this, which is the most selfish thing ever!

She is the first human being on earth who knew anything at all about me, from that first tinge of morning sickness. The longing of her heart, and lucky me! God chose her for me.

My mom delighted in me, her first child, after losing other babies, “miscarriages,” not sure she would ever carry to term. But she did. Then she delighted again in my brother Joe when he came along 18 months later, then Tim, then Tami and finally Danny. She had 5 babies in slightly more than 7 years. And it has been her heart’s joy to love us and ponder all the things about us.

“I have the greatest kids in any city or state. That’s the honest truth. I love my kids and I want to tell everybody and I don’t care who it is. I have the best kids and now I have grandkids and greats and I love it. I love every single one of them! It might take me awhile to remember all their names, but if I had time I could…” -my mamala, today on the phone

More than all the “adopted” spiritual sons and daughters and  the thousands of devoted and treasured friends she has amassed along her life’s journey as a pastor’s wife, she has delighted and reveled in loving her five children, her babies more than anything.

There are boxes in her closet filled with scraps of paper, journals, and backs of church bulletins where she has scribbled notes, a story about one of us or a scripture she felt was meant for me or a sibling. There are lined pages with our names at the top documenting the funny things we said or did, cute quotes, all the things she thought were so brilliant she never wanted to forget. All through our lives, she has loved to tell and retell our stories. She’ll say, “Remember when you thought eyelashes  were ‘eye-blashes?’ Or when you didn’t like sour foods because you felt they were ‘screamy?'”

She kept record that my little brother, Joe, called hub caps “cupstacks,” and referred to his pant legs as “pant sleeves.”  And she wrote down that our baby sister, Tami, called cow’s milk “wet whip cream” and freckles “sparkles” because it was cute. Danny, the baby of the family, referred to yesterday as “last morrow,” which is pretty astute, actually. And what do these silly moments have in common? Nothing but a mom who thought they were amazing enough to save them.

june 4 mamala and me 2016

And because her attention to us and love for us are grooved so deeply in her heart and brain, many times she can still access these same memories as if nothing is wrong, as if this form of dementia  isn’t reaching in and stealing from her. But other times, she can’t.

The person who has carried the memory of me longer than anyone, who has documented and celebrated every day of my existence, the woman who has cried with me in hard times, paced the floor praying with me during crisis, danced and rejoiced over my victories, encouraged me to do things that scared me because she thought absolutely no one could do it better than me, the one who has believed that I was heaven-sent and wonderful in every way and has oohed and aahed over even the insipid mundanity of my life and days – she is living with Alzheimer’s.

This woman, who has catalogued our lives, collected the bits and pieces of us, set herself to create and then commemorate each memory, and share it with enthusiasm and joy across the years, she is battling a memory thief.

She is living with the disease, and she is working hard to hold on. She says to me, “It’s like I’m going backwards. What is happening to me?”

But here I am, feeling sorry for myself.

Who will remember my first solid food and be able to tell the story with such glory? Or how fantastically I navigated those concrete stairs when I first saw them and how even though she wanted to stop me so I wouldn’t get hurt, she let me try anyway? She tells the story with great tension and animation, as if I am the only baby ever to have climbed stairs, and she tells me how she cheered for me as I reached the top and turned around and sat down, satisfied with my victory. She was so proud. Who will remember or care about those things? In the scope of everything, what does that story matter anyway? But still. She was keeping it for me, periodically encouraging me with a glorified vision of myself as a baby…

No one else will ever know me like my mama does.

It’s what we do as moms. Like Jesus’s mother, Mary, she “pondered these things and held them in her heart.”

Today, when we spoke on the phone, as if everything were as it has always been, she blessed my future, she gave me a message for Dave and said I needed to get a dog, both for protection and to avoid loneliness. Such wisdom, such good advice.

Then she started telling me about a most wonderful day she had experienced ” a week or two ago,” about going downtown to a coffee place and eating outdoors at a sidewalk table and then going across the street to “that big, beautiful building” and how she so wished I could have been there and hopes she gets to do it again and I can come along. She forgot that I was there, I took her to those places.

It made me feel sorry for myself.

But it’s my turn to keep her memories for her now.

– – – -#endalz- – – –

Important information

June is Alzheimer’s Awareness Month and it is my mom’s birth month. I am talking openly about a disease that kills people because I want to raise awareness and say we need to act. There is no one less deserving of Alzheimer’s than my mom, no one. But it doesn’t care who you are.  The Alzheimer’s Association will say anyone with a brain is at risk, as this disease is set to reach epidemic proportions in our lifetime, according to researchers.

I want our generation to set themselves to stopping this disease before it reaches predicted, staggering numbers which will be visited upon our children and theirs. Let’s spread the word!

#endalz  #igopurpletoendalz  #someoneilovehasalzheimers

Here are the facts:

quick-facts-2016

Watch this 1 minute and 45 seconds to hear more:

I hope all your memories are in a safe place.