The Cold Season of Alzheimer's

Winter is coming, I feel it.  It's cold, restless, grey.  I feel the chills come down my body.  I look for cover but I know we have plenty of time to find shelter.  This is just the beginning.  The Chicago winters continue to become more painful than the one before and I don't know how much longer I can stay.  I constantly think I may have one, two more years left in me.  I wonder how those that can't remember the day before can see what the next day holds.  Do they understand the seasons are changing, that the cold is about to take over?

I talk to dad tonight and I smile.  He makes my winters feel warm and my life feel like I have a purpose to change something that feels out of my reach.  He brings joy to my life when I hear his voice and he can recount the day.  His face lights up my life when I talk about "our story" in passing to a stranger and how Alzheimer's affects our lives.  I use to walk into conversations feeling uncomfortable to describe what its like to deal with the disease, as if I was a downer.  I use to shy away and pretend it was a cold, something that would pass over after a few nights.  When friends asked how everything was going with dad, I would politely say things are fine, and move onto another topic like the weather, the football score or the empty beer in my hand.  Maybe the summer warmed me up to understand the cold facts that the winter seems to bring with its harsh reality. 

I still have a hard time identifying myself as someone that has a parent that has Alzheimer's.  That was even tough to write just now.   I just want to be a 30-something year old that lives life like every other 30 year old.  I do though, have a different kind of walk now as I enter into the Alzheimer's meetings.  I walk a bit taller.  I walk more informed. I walk because I love.  I walk because it's my future. 

I still hide behind this disease at times, it's a battle every day but I'm proud.  I'm proud that my father is allowing me to help him be who he can be in this time of decline.  He allows my brother and I to be his security net, to make the right decision for his health without much fight.  He knows we love him.  The bitterness of the cold is there.  I am still angry that we have no cure of this disease, but I am doing all that I can to warm up these moments and vocalize the importance of this disease and its future to make sure it's given the appropriate attention.  I speak from experience.

Celebrating the Present

There is something poetic about a wedding.  Lovers meet, lovers fall in love, lovers become a united couple and then they commit to each other till death do they part. It's whimsical, hopeful, romantic, but scary, unnerving and unknown.  As you sit in the audience, you hope the best for them, wonder will they continue to grow together, will they communicate their darkest thoughts and when rough patches hit can they weather the storm and find a balance between hardships and finding what brought them together from the start. With years of experience you know the decks are stacked against them but as you listen to their vows you hope that this is the couple that can break the conformity we know as divorce.

As I sit in the audience, I wonder not only about this and see my brother's happiness but does my dad see what I see or is he focused on remembering who he just met, where he needs to be or what city we are in.  I glance over at him, holding his hand and he is smiling.  It gives me comfort that in this moment, he can tune out all that he can't recall but live in the moment of watching my brother get married.  He may not be fully following but it's my world that I am creating and in my thoughts, he is living this moment like me and the rest of us sitting.

As I sit and listen and watch my brother smile at his soon to be wife and even when I arrived home and recall that day, I forget all the troubles that went with it.  I forget that my father missed his flight to Philadelphia because he was not prepared to leave on time.  I forget that he only packed clothes for the dinner the night before and a suit for the wedding even though both my brother and I ran through the list of things to pack.  I forget that he didn't remember the toast he gave or the people he met within a few minutes. I forget that I couldn't locate him from the moment he landed back home in Tucson till 12 hours later when he finally stepped foot at home and called.  I forget getting called by Tucson airport at 2 am that my father never picked up his luggage.  I forget calling my brother on his honeymoon frantically splitting up a list of hotels to see if he checked into one to explain his disappearance and coming up  empty handed.  I forget that when he called safely at home, he can't remember where he was during that time frame.  I forget the pain and worrisome he caused in moments of panic from the start, the middle and the end of this trip.

Through it all, I remember a father that watched his son get married and who had a daughter by his side as he smiled, proud and in that moment, content.  I could see it on his face and he felt present.  Thats what made this trip all worth it.  These are the moments I focus on and cherish.  I have to.  It's what gives me peace of mind and allows me to remember him for who he was not who he is turning into.  They say life is about living in the present not the past.  I never understood that until I was forced to.  It's what has helped me to breath, be patient and accept our new reality.

Lessons I Continue to Learn - Silver Lining to ALZ

March is fast approaching and my brother's wedding is a month away.  I am so happy and ecstatic for him and the woman he has chosen.  I am so excited for him and this wonderful milestone.  When I visited last, I saw the way he looked at her and the way he smiled when she walked into the room.  I know this is a good thing, I know he waited and found someone that makes him smile and for that I am so grateful and I cannot wait to be part of this celebration.  All I want is for him and all my siblings to be happy.

It is, however, a bittersweet celebration even though I know its a happy occasion.  I am sad.  I am anxious for the day, for the trip, for the reality I will face.  I am anxious of seeing my father.  I have never had that feeling about seeing a parent in a celebratory occasion but my last visit with him was devastating.  I know that when I see my father, I have to see the deterioration that is happening.  I have to witness the smart cognizant man that I know who has become a lost soul who I barely recognize.  Out of sight, out of mind sometimes has been my biggest coping mechanism that helps me feel normal as a 33 year old.  Not this heavy mess that exists and I know I cannot ignore.

As I walk through this transition in my life, I realize, I need my friends and family, all of you.  I realize that the things I sweat when life was simpler is so trivial to what is important to me today.  My outlook on life within the last few months has changed drastically.  This transition is so deep, that those that have either lost a family member or who are currently going through a loss can only understand.  Honestly, it's been hard to connect with friends or family that don't have this connection.  What use to be important as a single 33 year old female that lives in a beautiful city with a wonderful job has shifted to doing things with purpose and circling myself with those I love and creating meaning for everything, every moment I have, not the material things.  I have a different perspective in how each day should be lived, how each phone conversation should end, how each disagreement should be solved and how opportunities should be captured.

I have realized that life is so short and time with people is uncertain.  I understand the importance of time and its limited capacity.  Without Alzheimer's I would not have understood this concept until later in life and for this I find the silver lining.  I can be present with my friends, I can understand the sadness life comes with connecting and losing. With this thought, I can enjoy my brother's wedding.  I can laugh, cry, celebrate and be my father's date, helping him enjoy what he may or may not remember years to come.  I can be his rock and I can smile knowing this was a moment we shared.  This is what I have realized is true and is non-surface love and its tough.....really, really tough.
 

Mind Games

Life is interesting as I age. What I have learned is that the more you try to figure it out, the more you lose control.  It's funny how that works out but the mind keeps you going.  You think as you get older you have everything perfectly planned, but that's a facade! Nothing is as it seems.

I remember as a child, building castles and fortresses with blankets on the couch, connecting them to chairs and tables.  How simple that seemed but how fun the imagination was to create something so extraordinary and complex.  I remember the crazy thoughts in my head that would create so many creative things to keep myself  busy when my parents were occupied.  As I aged, card games became an obsession, it flexed the mind.  There were nights when I could not fall asleep because I would not let anyone beat me, though it took months and months to figure a strategy the mind kept building as I figured out my way to defeat the opponent.

The mind is such an infinite being! It defines not only who you are but how you started, who you are now and what you have to build off of for the future.  Without it you become numb, lost, fragile, delicate, unknown, obsolete, vanished and limited.

Without the mind you lose sight of everything around you.  When you don't exercise it, you lose yourself.  You become someone that people do not recognize.  You are a wanderer in the middle of traffic.  You are the grey cloud that covers the sun.  You are a feather that drifts without its purpose.  You are a whisper that goes unknown.  You become my father, a victim of Alzheimer's.

There are days I do not recognize him.  There are moments when I question what our next options are.  There are sleepless nights I don't know how I can help. 

This is the beginning and we are learning together in this process we call life and age, parent and child reversed.  Together we are going to figure out how to best make this easier on him and for the family.  From this moment on, there will be moments he will not like Shane or me.  He will not agree with what we decide but know this is for the best.  We love you Dad and will never compromise your wishes or your health.  We are here for you and only for your safety.  Please know, you are our dad no matter where your mind goes, that's who you will always be to us.