The long journey of Alzheimer’s Disease

Share

My mom was originally diagnosed with dementia in 2013; but about a year later, I was talking to her doctor and she was talking about my mom’s Alzheimer’s diagnosis.  So I asked and found out that yes, my mom had Alzheimer’s and a specific type of Alzheimer’s caused by Traumatic Brain Injury.  My mom’s Alzheimer’s is very similar to the kind that football players get.

The first thing I did was go online to get an idea of how different or worse or better this diagnosis was and I found a form I filled out to see how long she might live (on average).  The website came back saying it could be five to ten years.  And here we are four years from her original Alzheimer’s diagnosis and I realize that I have very little time left with my mom.  She is disappearing more and more every day and I will only get flashes of who she was.  

When my mom calls now, she says “Jennifer?  This is Bobbie.  Do you know who I am?”  I always smile and say, “Yes, mom.  I know who you are.” And her answer is always, “Ok, good.”  

She calls me because my number is right by her phone and at least for a while longer she still remembers how to use a phone, thought that is fading away, too.  Right now, she keeps telling me her phone is broken and most of the time I call the front desk at her facility and have someone tell her I’m trying to get a hold of her.  I’m considering getting her a rotary phone with the turn dial, because I’m guessing she’ll remember how to use those for a while longer.

My mom lives in an assisted living facility for now, but her case manager did call a few months ago and warn me that at some point (we don’t know when) my mom will need more care than they can give her and she’ll need to be moved to a memory care unit.  She’ll be locked in and limited.  I’ve already noticed my mom moving into more of the malaise of Alzheimer’s where she can’t remember the sentence she started and she can’t remember the words so she just doesn’t talk very much.

Like the other day she was telling me about how her phone wasn’t working (again) and then when I called it to check and made a joke about how it was ringing she got really upset with me and asked me to leave.  When I got up to put my coat on and say goodbye she started sobbing.  Now let me tell you, if my mom did cry when I was a kid, I NEVER saw it.  My mom is not a cryer!  So to see her sobbing was difficult for me.  I asked her if she wanted a hug before I left and she just said, “No!  I want you to leave.”

I went home upset and sad and wondering if I could have done something different.  I usually try to make my mom laugh through her confusion and I’m a joke-maker. After that, I was kicking myself, thinking that I’d upset her by making light of her struggles.  It was all I thought about for hours, but then later that night my mom called me because she’d seen my number on her phone log and wanted to call me back.  She’d completely forgotten about sobbing or being mad at me.  

What a blessing for her!  Not so much for me, but I’m strong enough to do this.  At least my mom doesn’t remember feeling so sad that she was sobbing.  Someone later told me that my mom probably had a moment of clarity just then and knew that she had Alzheimer’s and was overwhelmed with depression and pain.  So it’s a double blessing that she doesn’t remember.

I’ll remember for her.

And I’ll remember long after she is gone.  I don’t know how many more years she will have, if she even has that long, and I truly don’t know how long it will be before she doesn’t even know who I am. For now, I’m lucky that about half the time, she does realize I’m her daughter and she remembers my name, most of the time.

I’m not going to lie though.  Being there for my mom through her Alzheimer’s Disease will be the toughest thing I EVER do in my life.  This disease is brutal.  It takes everything, every memory, every moment, and it’s taking my mom one piece at a time until she won’t even be able to talk, to hold her head up or swallow.  

This is no way to leave this world.  My mom would want to leave sitting at brunch with her friends, wearing her purple dress and red hat, laughing and telling stories.  I wish she could go out that way, but that is not the card she drew.  It is my job to make sure she leaves this world with as much dignity and grace as she would want.

Each year, I participate in The Walk to End Alzheimer’s.  The money I raise on RedBubble, through my www.fckalz.org website and through Walk to End ALZ fundraising goes to the Alzheimer’s Association.  I’ve already created my team for 2018.  If you can, please consider donating.

Even though she doesn’t know it, my mom (and I) appreciate it very much.


Share

Leave a Reply