Thursday, February 23, 2017

The Faces of Alzheimer's

Take a look at these pictures of my mom. 
In which photos does she have Alzheimer's?

What does Alzheimer's look like? Think it is easy to tell? Think again.

Alzheimer's disease can turn the innocent faces of our loved ones into the masters of disguise. Over time they learn to accommodate for their shortcomings. They make excuses or simply learn to do simple tasks another way. The way they once lived, a life of confidence and independence, is slipping through their fingers. At some point the reality of the effects of the disease can no longer be ignored by anyone. Sure, it is scary.  They are scared. You are scared and rightly so.

Alzheimer’s disease is not kind.  There is no cure. There are no survivors. And the disease creates an alarming new reality for the victim and caregivers, which is confusing for all. At first, they are lucid enough to know, at times, that what they are saying or doing is not in line with how they once lived their life. They wander, lose items, and get lost. Names, dates, appointments and even their own personal story and history is forgotten.  The ones they love the most will be forgotten or confused with someone else. And it gets progressively worse over time. Sometimes they go quickly, while others, like my mom who has been diagnosed with the disease for over a decade, must suffer year after year. 

We all suffer because of Alzheimer’s disease.

Alzheimer’s disease takes a toll on family members, friends and community members. We all must decide what roll we are willing to play in the victim’s life.  Some cannot handle the pain of seeing a loved one suffer from the disease and simply make the choice to no longer show up. It may seem cruel, but I have seen it happen. I have seen a mom of many children never have a visitor- not a family member, not a friend or church member, no one from her past life came to visit. Others are the complete polar opposite. They drop everything in their lives to take care of a loved one -24 hours a day, every day.

I am considered to be caregiver for my mom, despite the fact that she lives in a facility with 24-hour care. I am her Power of Attorney; I still do her laundry for her, buy her clothes and toiletries and make sure she gets her haircut. I visit my mom regularly and make sure she gets the care she deserves. Most importantly, I show my mom unconditional love.

The polarity of feelings that occur while loving and taking care of my mom is exhausting. The highs of surprising moments of clarity I experience with my mom can quickly be erased by the devastation of a single moment- a moment of my own clarity on the realities of the disease. Highs and lows, pain and laughter, acceptance and denial, happiness and anger- these are my day to day reality.

Many of you may be in the same boat I am, but for those who are not, you cannot comprehend what it is like to love an Alzheimer’s victim. Let me help paint a picture of what it is like. Take a moment to think of one of the people in your life who you love the most. Now, conjure up memories you have had with them- trips, quiet moments, the ways they loved you, their smile and laughter, inside jokes, their idiosyncrasies and favorites meals and hangouts. Now slowly take all of that from them, little by little, bit by bit. Make sure you steal parts of their life at random. Place them in a new reality. Let their new reality consist of hallucinations, personality changes, confusion, and anger and top it off with a whole group of people taking away every bit of their independence. Make sure everyone tells them what they are supposed to think and do. If you aren’t upset enough about seeing your loved one suffer through their new hell on earth, you get to navigate it right along side then. And there’s a catch. They are no longer the person you once knew, so understanding how to help console them and support them on their journey is going to be a guessing game. At some point your loved one no longer understands their situation, but you do. You get to understand and experience it all.

But we aren’t done yet! Now we will focus on you. Can you imagine what it feels like for you now that your loved one no longer knows your name or even recognizes you? Take the person who loved to read and see them struggle to make sense of words or physically see the words on the page. See the individual who has a bachelors and masters degree, who once thought deeply, loved art and theatre and worked in an academic environment and now imagine them, slumped over in a wheelchair unable to do anything for themselves. Remember the bright eyed, beautiful person who made sure you knew how much you were loved with soft verses sung in your ear, hugs and kisses offered unconditionally, and cheers from the bleachers, but then that person mutates into someone who stares at you blankly, trying to fit you into their new reality of incoherent babbling and hallucinations of animals, people and things you cannot see, hear or understand. The strong, vivacious, healthy person you knew turns into a weak, hobbled individual who instead of a enjoying a hearty meal and an evening walk with the neighbor must now endure pureed food and a day filled with sitting in a wheelchair talking with their invisible friends.

The cruelty of Alzheimer’s disease does not discriminate. It will latch on to men, women, scholars, farmers, and any individual of any religion, ethnicity, race and socioeconomic class. Once the jaws of the disease latch on, they never let go.

Every 66 seconds an individual in the United States develops Alzheimer’s disease. 

Alzheimer’s is not just a disease, it’s an epidemic, one I live with, we all live with, every single day until we find a cure.

So, are you still wondering in which pictures my mom had Alzheimer's disease?

All of them.