The Face of Alzheimer’s

November is national Alzheimer’s awareness month, not too many people know that.  It doesn’t get the attention that breast cancer or ALS or many other diseases get.  No one wears a t-shirt saying “I beat Alzheimer’s” because that simply doesn’t happen.  There is nothing happy or encouraging about this disease.  It is a degenerative brain disease that kills 100% of the time.  There is no cure and truly not much slowing it down once it takes hold.

This is what Alzheimer’s looks like. It isn’t pretty.  This is real, raw and painful to see, but please don’t turn away.  Don’t avert your eyes because it’s hard to look at.  This is Alzheimer’s and it SUCKS!!!!!!  This is my mother.

Meet my mom. This is what Alzheimer's look like.

Meet my mom.  Eighteen year “survivor” of Alzheimer’s disease.

Mom has suffered with this shit disease for 18 years.  Yes, you read that correctly, 18 YEARS!  It began at the age of 56 (she is 74 today) and it hasn’t been an easy road to travel.

Unfortunately there is a pretty massive stigma attached to Alzheimer’s.  People find it embarrassing and uncomfortable to be around someone with this disease.  A simple conversation can be extremely difficult because of the repetitive questions and lack of recognition that quickly becomes frustrating for everyone involved; ESPECIALLY for the person suffering the disease.  The person affected, overtime, becomes fractious and hard to be around. They often yell out and say inappropriate things that offend others.

Eventually the sufferer changes physically as well.  Their walk slows to an unsure shuffle.  They forget how to dress themselves, bath themselves, feed themselves and even go the restroom alone.  Their face contorts, their muscles atrophy and their bodies just sort of curl up (although most don’t make it that far into the disease).  They no longer look AT ALL like the person we once knew.  Who wants to see that?

We hide them away supposedly for their own good and vanity, but is it? Our society today places far too much emphasis on what’s pretty or pleasant to look at.  We don’t like to see the ugly or uncomfortable. People with Alzheimer’s are not pretty or pleasant but it’s time we stop hiding them.  It’s time to stop being embarrassed by this disease and face it head on and out in the open.

So here’s where I started, I took this photo in 2013.  For me this photo is EVERYTHING.  This photo personifies her disease.  I posted it to Face Book several years ago.

Mom with her three girls

Mom with her three girls.  One of my favorite photos and one of the hardest I ever shot.

My sisters weren’t happy that I chose to have her face showing (and mom would have HATED it), but I felt that it was important.  It’s important because THAT’S MY MOM.   This is what she looks like now.  She isn’t pretty anymore in the physical sense, but she is my MOM.  I refuse to be embarrassed by her Alzheimer’s.

I personally feel that if I had chosen to exclude her face I wouldn’t have been true to the disease, and worse, true to her.  I would be just like so many others that are afraid to show the less than perfect moments.  Everything isn’t perfect.  Shit, it isn’t even GOOD.  Everything about this sucks, but why hide that?  Why contribute to the humiliation and embarressment that is attached to this disease?  Let’s just tell it like it is:

Alzheimer’s disease is messy, frustrating, nasty, degrading, humiliating, ugly, embarrassing and hard.  

There is no easy road through this; but we can choose to not hide all of that and help others cope through our own honesty and pain.  By being honest and open about it and SHOWING people what it looks like, we can push past the embarrassment and stigma.  When we do, it will make it easier for ALL those affected by this vile disease.

I’ll start.  This is my mother, she has Alzheimer’s, and I think she is BEAUTIFUL!

My sweet mom and Trent the crazy hunting dog.

My sweet mom and Trent the crazy hunting dog.

Comments

  1. Robbyn Hill says:

    Beautiful lady, beautiful family, blessed to be a part of your lives – Love you All!!!! Thank you for the post!!!

  2. This is a very powerful post Sarah. My heart goes out to you and your family. How terrible for your mother and for all of you that she has had this terrible disease for 18 years. I completely agree that the reality of the people afflicted is really swept under the rug. As one who has experienced this first hand, how would you like to see what is available to Alzheimer’s patients and their families changed?

    • SarahsNest says:

      Thank you for your kind comment! I simply want it to be less of stigma. I want people to be more understanding when they see someone with ANY dementia disease. They act different, they talk different, they look different and no one wants any part of that. I really would love to see more resources out there for caregivers and family members and of course a LOT more research on the disease itself.

  3. Sarah~
    a pleasure to know you, and to be given the opportunity to read and feel your thoughts.
    Your heart is in the right place. Yes, this is your Mom. Who knows what or how she feels deep down, but I am betting she is proud to have a daughter like you, so brave, expressive and present. The photos are gripping because they are real. Thank you Sarah.

  4. Donna Craig Seidel says:

    Oh, Sarah, Sweetie, I had no idea you had this blog! It’s openly beautiful! Note to others: my husband Rod and Sarah’s mom are 1st cousins. Their moms were sisters. We’ve watched this happen, though we probably haven’t been as supportive as we could, or should have been 🙁 Our excuses of moves, job losses, fixing up our old farmhouse, our own illnesses, distance, ARE excuses, not valid reasons. I can’t truly fathom how this has affected the core of your lovely families!

    Now my critique! I suggest you clean up the language a bit. :-). That will make it possible to copy this wonderful message to share with the prudish, the young, the elderly, the overly-sheltered’ or to be preached from the pulpit! The message is so powerful, it needs to be shared and to be widely distributed.

    You, Sweet Sarah, are a Wonderful Writer! Love you!

    Prudishly. :-).
    Donna

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