The Face of Alzheimer’s

I’ve been dreaming about my Mom a lot lately. In one dream she was having trouble making a sandwich and instead of asking for help she just gave up. I discovered the bread and mustard and everything out and asked her if she had eaten and she replied “No! I couldn’t remember how to make one.” She was upset and I told her it was ok to ask for help. I sat with her and made it for her while she said “but I should have been able to do it.” And I said of course she should, and but that we all need help sometimes.

There was a lot more to the dream that I don’t remember – this was the part directly before I woke up. I remember how flustered she was in the dream and how she said she guessed she needed a “big sister” to do it for her. I am not a dream analyst and I have no idea what any of it means. But it’s the fact that I can talk to her in these dreams that make them so incredible. Obviously in this most recent dream she was at the forefront of Alzheimer’s. But she could still talk to me. In reality, and oh there’s a lot of stories I could tell, I remember the day she put the egg shells into a cupboard because she couldn’t remember what she was supposed to do with them. The utter confusion as she held the egg shells. My heart wrenching because I knew I could not tell her to put them in the trash can. Waiting until I could move the eggshells when she wasn’t looking.

If you want to know what Alzheimer’s looks like, look closely at my Mom’s face. She is the face of Alzheimer’s. This is the toll it takes. The vacant expression, the staring off into space – the listlessness and the leaning. Look at her eyes. She no longer sees the world around her, she can only rarely focus on anything. If she manages to look directly at me sometimes I’ll still get a smile. Mostly not. Maybe she’ll say a word or two to me, maybe she won’t. Today I showed her a picture of my Dad, all dressed up in his Army uniform standing in front of a flag. Who is this I ask, putting it carefully in her line of vision. Who is this? She glances at it before her eyes slide away. I don’t know she says clearly. You don’t know who this is? I ask again. She mutters uh-uh. Usually I don’t do this to her. I don’t ask the hard questions and I don’t try and make her remember.

But today I was curious. I set the picture down without another word and then I looked at her and said “Do you know me?” I asked it twice and she just looked away. No response. Nothing in her eyes. So I sat down and read to her, the storybooks she used to love. Where The Wild Things Are, Tikki Tikki Tembo, Strega Nona. I did all the voices and she was interested… I think. She didn’t try and look at the pictures. She didn’t watch me as I read. But she didn’t fall asleep either, so I’ll take that as a win. One of the care ladies stopped by and I think was sorry to have interrupted but I kind of wished she would have stayed and listened too. It made me have the idea to do a story time like my Mom used to do. So I messaged the Director and asked her if I could do this for the residents sometime.

The time before when I visited, Baby Girl was with me. We sat outside for awhile and decided that it was too hot so we took Mom inside, to her room. Baby Girl and I decided to “organize” Mom’s room. It’s always tidy but Baby Girl went through the postcards that Mom’s best friend Panchita sends weekly without fail and decided which to hang on the wall and the door. I went through Mom’s closet and found a ton of stuff to weed out. We thoroughly enjoyed ourselves and Mom sat and took it all in. She never said a word but her eyes were open the whole time and she did look around a lot. We talked and laughed anyway. Mom enjoys the commotion – she likes to listen to people chatter around her.

Thursday July 22 is Mom’s 76th birthday. The day before I am throwing a party for her. It’s going to have live music thanks to the Director of the facility, and grilled salmon and lovely potatoes thanks to some of the ladies that work there. I’ll bring the decorations and the cake and all of us, Tony included, are wearing purple to honor my Mom. All the residents and caregivers are invited. It’ll be a great day and I’m really looking forward to it. You might wonder why we would make all this effort for someone who will not know what is going on – but I tell you if I can make her feel the love that surrounds her then that is what I’m going to do. I’m going to celebrate the heck outta my Mom! She deserves a party. We all do. Alzheimer’s is an ass kicker for the entire family so Alzheimer’s awareness is the theme – purple and butterflies – because it needs a cure badly. Even some of her oldest friends are coming. Friends who I hope will understand that what they see is not the lady they knew, but that somewhere deep inside she still recognizes them.

I pray that I never have to be the face of Alzheimer’s like my Mom is. I pray that what she is suffering is not in vain – that if I can somehow make a difference that I will. I pray that my Baby Girl doesn’t have to go through this twice. That she’ll be around to see the cure. So give us hope on this day, this day of Alzheimer’s awareness. Thursday July 21st wear purple for my Mom and thank your lucky stars or your merciful God that your brain is healthy and strong.

Memories matter. And in this family, no one fights alone.

Independence Day

I read. I suspect you know that about me already. Recently I have read “Get Out of Your Head” by Jennie Allen, “Talking to Strangers” by Malcolm Gladwell and I’m currently reading “Raising a Strong Daughter in a Toxic Culture” by Meg Meeker, M.D.

This past year has been extremely challenging as I watched my Dad’s health deteriorate and then watched him pass away, handling all of his affairs along with my grief, and not being able to draw comfort from my Mom, who has no idea he has passed, and probably doesn’t remember him at this point anyway. When I go see my Mom I keep a happy face, a smile and encouraging words. I wonder if she knows how fake I’m being. How anxiety grips me before and after each visit, how guilt and sadness can bring me down for the rest of the day. She searches my face sometimes as if she’s looking for the me she used to know. As if this person in front of her, while very welcome, is a stranger she can’t quite get used to.

And yet I do draw some comfort from her. Just to be able to still touch her face, hold her hands, and breathe her in. She’s still here and that is everything. I know the day is coming when even this will be gone from me. I realize what an important role she has always played in my life – my parent, my cheerleader, my coach, my counselor, my rock and my friend. She always had my back, no matter what. Deep conversations and deep emotions never put her off. We laughed and we cried and we loved and I already miss that part of my life more than I can communicate.

However, in reading these books and doing a lot of soul searching, I have come to realize that now I must be all of this to my Baby Girl. It’s her turn. Mine and her’s turn. Of course there is still a good dozen years before we can naturally morph into “friends” but my job right now is to set the stage for that eventuality. I need to set aside my fear, my grief and my anger and focus on what she needs from me. I’m afraid I haven’t done a very good job of it as all these huge emotions took their toll on my mental and physical health.

I’m ready now. Ready to teach her that I love her no matter what, that she’s important, not just to me and her Daddy, but to God. I’m ready to show her that God created her through love and that He intended for her to be my daughter. I believe that He sent my Baby Girl to comfort me through these times and to let me know that it doesn’t end with my parents’ deaths. They set the stage and it’s my time to act. Everything that they taught me, everything that they were – it’s time to pass all of it along to her.

I have to start with my own health. Just last night I caught myself saying “I just feel fat.” And Baby Girl not only heard me but commented “you always say you feel fat but you’re perfect just the way you are.” She loves me as I am, and so does Tony and so does God. That’s pretty powerful. Instead of feeling fat and discouraged I will feel grateful and blessed. God put these people in my life, along with some great women friends, to continuously remind me that I am loved, and in turn, I will love as well. BUT I will also treat my body better – like the temple that it is, and I hope that I will be able to teach Baby Girl to love herself exactly as she is.

She’s 8 years old now, and I realize also that I will, in fact, miss these days. If I don’t get out of my head and into her life, I will miss it entirely. And I will regret it. She’s an amazing person, full of love and laughter and sensitivity and emotion and imagination. She’s a lot like my Mom. And a lot like me. Last night I sat and watched the complete rapture and joy on her face as we watched the fireworks at Lone Star Park. She has never seen real fireworks before and she was super excited and enthralled with it. The last song they played was “God Bless the USA” and I teared up as I watched, and my husband put his arm around me (this was the song my Dad and I danced to at my wedding). I looked up into those fireworks and at the joy on my daughter’s face and I knew that I had to let her live in a world of happiness and peace and total love. Not grief or sorrow or anger. My Dad would want us to be happy. Everything he ever did was for my Mom, my brother, me or his grandkids.

Today’s the day. Independence Day. I will live for you, Baby Girl, and for me, and for God. We will take this life by storm and we will not back down. I’ll be here for you, until God calls me home. I pray that you will be strong enough to face whatever life throws at you, including having to put me in a home if I succumb to dementia. I pray that I am strong enough for you. I promise I’ll do my best. And I promise that my heart will never, ever forget you. I know my Mom’s hasn’t.

Happy Independence Day everyone. I hope you find peace in your heart and love and laughter in your home.