Blog 45: Alzheimer's and Dementia: A Different Mom

A slow change is taking place with my mom.  She’s slipping even more out of my life.  Since I don’t live near her, I rely on our phone conversations to keep in touch between visits.  Those phone calls aren’t as frequent as they used to be, but that is because it's so hard to talk to her now.  Many times she doesn't engage in conversation or she doesn't remember how to hold the phone up to her ear, or she puts the phone down and she is gone.

Today she told me she couldn't hear me and I told her to hold the phone closer to her ear.  She did for a few seconds but I had to keep reminding her to hold the phone by her ear.  Mom asked me what I was doing and I said I was reading.  She asked me if Abbie was coming over.  I was shocked that she remembered her great granddaughter's name, and I assumed she must have remembered her visit last month.   Oh, how she loved spending time with Abbie!  

Sometimes she remembers and says things that completely take me by surprise.  Remembering Abbie was one of them.  Another time she asked me if I still play the flute.  I played in school and obviously that memory came back to her.  Last week she told me to, "Get your butt over here so I can see your pretty face."  She was being bossy in a fun, loving mom way, which is what she used to do.  Often she can't even remember what she did a minute ago or who came to see her that day, but then she can remember a person who came to see her a long time ago.  Every day seems to be different, as much as it is predictable, if that makes any sense.  You just never know when those neuro-transmitters in her brain are going to make a connection.

During our very brief conversation, mom said she had a purse and she was trying to find it.  Her voice trailed off in the distance and I knew I was going to lose her.  I called out for her and she said, "Wait, Liz, wait!"  For a brief moment she remembered I was on the phone, but those seconds that went by stole her memory of being on the phone with me.  I kept calling out to her and saying, "Mom, are you there?" I could hear her in her room, but she forgot she was talking to me.  After a few moments of calling out for her, I finally, sadly, hung up the phone.

I sat there and just stared at my book, unable to read, unable to concentrate on anything, as my thoughts couldn’t break away from her.  I want so bad to be able to have a normal conversation with my mom, but I know that is never going to happen again.  Some days she is more 'there' than others, and I appreciate those moments.  Her voice is still the same, and I feel so soothed by the sound of her voice.  

Yesterday I was going through photos and videos on my computer and I came across a video I took of my mom talking on the phone to my son in California.  I was visiting my mom when my son called.  She didn’t seem to notice or care that I was video recording her. They spoke for about 10 minutes, and even though she repeated some things and talked about her ‘make believe’ world, she seemed to be engaged in the conversation and answered questions, etc.  A lot has changed in eight months. 

I feel bad about recording my mom on video and for taking so many pictures.  Before my mom became ill she always hated the camera, and would stick her hands up to block her face whenever she saw one. She’s different now and she will even pose for a picture.  She never complains.  I keep having this battle in my head about whether or not I should be taking pictures or if I should respect her wishes of how she felt about it before she got Alzheimer’s.  I just feel that in some weird way, if there’s anything good to come out of her illness, it’s that we are able to capture some memories of our visits and our times together that I can cherish, and my kids and grandchildren can cherish, for the rest of our lives.  I’m sure it’s a good thing...those four generation pictures, those moments of tenderness, hugs, smiles, and togetherness. 

Too bad that when Mom was well and healthy we weren’t able to take many pictures of her.  I frequently talk to my aunt, and she said that Mom fussed about getting her picture taken, even when she was a little girl.  I don’t know why because she was so beautiful.  She still is beautiful.  Dementia has changed her, but I still only see my beautiful mom whenever I look at her. 

Blog 44: Barefoot, Fireflies, and Tents...Reminiscing Again (Video)

Times were different when I was a kid in the 60’s.   We played outside until dark, running around barefoot, even running across gravel driveways with ease.   If you stepped on a thistle, you only did it once, because you made sure you remembered where it was so that you wouldn’t do that again.  When you got thirsty, you just turned on the hose and squirted water in your mouth.   There was no need to go through all the trouble of going inside the house to get a glass of water.  There wasn't time anyway.  Usually you were in the middle of a game of hide 'n seek or red rover, red rover.  Besides, your mom might see you and decide it’s time to come inside and get ready for bed.

We pulled the ‘lights’ off the fireflies flying in the night air, and made ‘rings’ on our fingers.  It was sticky so it would stick to our skin.  Then we'd hold our hands up and watch the blinking glow and then go back to playing.  It grosses me out to think of that now.   If we talked on the phone it was only to tell our friend to come over.  We made doll houses out of cardboard boxes and poked holes in the lids of coffee cans for our pet insects, and we made tents with blankets thrown over the picnic table.  Then we’d sleep on another blanket underneath that makeshift tent, while the grass got wetter and wetter as the night went on.  How in the world did we fit under a picnic table?

Mom would keep her bedroom window open so she could hear us…and we probably kept her awake with our endless chatter and giggles.  In all those attempts to make it through the night, I can only recall one morning waking up at dawn.  Most of the time we ditched our tent and headed indoors to our nice, soft, dry beds, scratching the mosquito bites as we sleepily made our way to our rooms.

Those were the days.  Thank you Mom for making it all possible and allowing me to be a kid.  I wasn't always the big sister, or the little mom.  I was also a kid, and my mom knew that.   

Blog 43: The Twisted Fate of Alzheimer's

Upon The Heart Our Story Is Told

When I was little you held me in your arms, and I felt your heart beating against my body.  I’m sure you felt my heart beating, too.  It's the heartbeat of love, that which is only felt by mother and child.  Now I hold your frail body in my arms and feel your heart beating against my body.  Upon the heart our story is told. 

I looked into your eyes and studied your beautiful face, and your voice soothed me.

Now I look into your eyes and see sadness, distance, and fear, and I use my voice to try and soothe you.  I do my best, but I don’t know if it’s working.  

My whole life you comforted me.  You wouldn’t let anyone hurt me and if anyone did, you took care of it and made me feel better.  I still need you, Mom.  I have to find new ways to be comforted by you.  But it’s more important for me to comfort you, and I will strive to bring you comfort every opportunity I can.

When I was weak you picked me up.  You helped me to be stronger and you showed me the way.  You are weak now Mom, and I will pick you up and show you the way.

You held my hand as a child, and protected me from harm.  I will hold your hand now and not let you fall.  I will protect you from harm.

You were so smart, so brave, and so strong to raise five daughters on your own.  You were a fighter.  I will fight for you now, Mom.   With God’s help, I will be brave and strong.

You could sense if anything was bothering me, and you would call me to see if everything was ok.  Now I do that to you, Mom.  If I sense something, I pick up the phone and call you.  I just need to hear your voice and know you are ok. 

Even in your darkest times, and I know you had some when I was growing up, you put your daughters’ happiness ahead of your own.  You put on a happy face so we wouldn’t worry.   But I could always see through that happy face.  I could see your tears.  I learned how to do that from you, Mom.  I’m putting on a happy face.  Can you see my tears?  I hope not. 

You used to be able to spot me in a crowded auditorium.  You could hear my cries on the playground, and you even said you could hear me (over everyone else) play my flute in concert band.  Your eyes and ears were keen.  Now I need to stand close to you and say something in order for you to recognize me.  Your mind doesn’t know me but your heart does.  It never forgets.  You know me as the one with the long, dark curly hair.  But you also know my name, and that makes me smile.  Sometimes I think you remember I’m your daughter.  The other day you even remembered I played the flute.  It seemed like you did, anyway.

You used to tell me stories about your childhood and mine.  Now you have forgotten almost all of that, and I am telling you stories that you don’t remember.   I will hold all of those memories for you, Mom, for as long as I can.  And if the day comes that I will forget, my kids will carry on those memories for us.  I'm sure some of them will get lost along the way.

You used to laugh at jokes until you had tears in your eyes.  I loved your laugh and the stories we used to tell.   We had some really fun times.  Now it’s hard to laugh over anything when I am with you, though I do laugh if something funny happens, and so do you.  Now my tears flow more readily.  I cry when I see you because I am happy to see you, yet sad to see you like this.  I cry when I leave you because I don’t know what you’ll be like the next time I see you.   I’m always hoping I can say something funny to make you laugh. 

All of our lives we struggled financially, but you made us feel wealthy.  You spared us from the details.  You sheltered us from stress, but you didn’t succeed in doing that with me.  As the oldest, I saw too much and I bore too much at such a young age.  It wasn’t your fault, Mom.  You did the best you could.  Now I am the person I am because of that.  I don’t know if I’m too strong or too weak.   I do not consider myself a victim; I am a survivor.  You always told me that, and you know me best.  Your words have always been the most loving words said to me.

When we were young we had all the time in the world.  Time to have fun, time to waste, time to do this or that.   We don’t have time on our side anymore.  Time is slipping away and stealing everything.   I promise you Mom, I will never let a day go by wasted.  I will live my life with grace and dignity, and honor you forever.  I will try to be as happy as I can, because I know that is what you would want for me.  I will steer clear from negativity, for I know that life is way too short.  I will always fill my days with thoughts of you, no matter what I am doing, and I will continue to pray that we will have more time with you.  

You hated goodbyes.  It was always hard to say goodbye to you when we were going to be apart for even a few days.  Now we are living with the longest, most painful, goodbye we could have ever imagined.  You are etched in my soul, my mom, my mom forever.  You are visible in everything I do.  Your face is always there.  Your voice is always there.  Your laughter is always there.  So is your Alzheimer’s now.  It’s always there.  Nobody should have to go through this alone.  Thank God you don’t understand what is happening.  Thank God you don’t have to say goodbye to us.

God, please give me strength, give me hope, give me peace, and let me feel your presence in my life.  Don’t take my mom until I am strong enough to say goodbye.