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.

Alzheimer's Knocked, I Answered

Do not ask me to remember,  Don’t try to make me understand, Let me rest and know you’re with me, Kiss my cheek and hold my hand. I’m confused beyond your concept, I am sad and sick and lost. All I know is that I need you, To be with me at all cost. Do not lose your patience with me, Do not scold or curse or cry. I can’t help the way I’m acting, Can’t be different though I try. Just remember that I need you, That the best of me is gone, Please don’t fail to stand beside me, Love me ’til my life is done.

-Author Unknown

 
I've delayed this post as long as I can because writing it makes it real and selfishly I don't want to go through the emotions of the reality I face.  My father is fighting Alzheimer's.  This is my reality.  I've written it, its now on paper.  We are no longer practicing.  We are no longer gearing up for whats to come.  We are in the middle of this upward battle.

Three weeks ago I saw my father and he was not the person I know. To watch your own dad deteriorate right in front of your eyes is something that is indescribable.  Some people say its better to have him healthy and alive yet they have never dealt with an Alzheimer's patient.  There are moments that I have of us as kids, laughing, giggling, snuggling and those are such great memories to hold onto.  The smile my father had growing up was priceless and stories he has from his casino days cannot be told in movies.  He's a man I adore and a man who has always been there for me.

So this is my pledge to my father in 2014:

• I will find you the best home care so you don't have to worry about living alone
• I will make sure you have the best medical care I can find
• I will join an Alzheimer's support group so that I know how I can help you
• I will make work second and family first
• Shane and I will work together as a team to fight this
• You will never have to worry about being alone, ever

Friends and family, I am scared.  I am overwhelmed with what I must face and what 2014 will mean to me, my father and my brother.  I know that I need to be strong and I know that I am not alone.  The overwhelming support of friends thus far has been unbelievable.

This is what I ask of you:

• If I do not seem present, please don't take offense, its not you
• If I decline invitations, it's not out of love but the need to have time alone or to care for my father
• I am not good about asking for help, I need to be pushed
• There will be good days and bad, please love me through them all
• Your expertise is definitely needed, I have no idea how to plan for a parent alone
• Some days I will need your help to just be distracted, please push
• Sometimes a hug or call may be all I need

This is my next phase of life.  I've been patient, calm and open-minded. I will never stop holding his hand or pushing him to remember.  This is my goal.  All I know is the person he molded me to be and the love he gives me everyday.  It's now my time to help him through the moments that I know will be tough for the both of us.  I won't stop, I won't give up, I won't let go.

My Thanks to 2013

When I think about all that I have to be thankful for I smile.  I smile for what I have, both the past and the present.  I smile for the memories that make me who I am today and the thoughts of the present that allow me to live in the moment.  I often find myself when I am in a cab going from location to location, staring out at the window, listening to music and looking at the city horizon as it casts light onto the buildings, thinking.  Its during this time that I find myself reflecting back at how I ended up here and how thankful I am that I live the life I live.  I am surrounded by a wonderful and supportive family.  I truly believe that it takes a village to raise a child and that each and every person that comes into your life, touches you in one way shape or form.  I know this through experience.

I am thankful for so many things and I am blessed in so many ways.  As I look back at the year as it relates to my father, I am reminded of one of his favorite Beatles songs Let It Be.  As each year goes by, I realize that this is and always will be the theme song to this disease.  We are still fighting strong and its been a steady year.  I sometimes wonder, if it's not him being steady but me getting more and more use to the idea that this is happening.  It's been a roller-coaster of emotions for me to grasp that I may have a father at some point in time that will no longer be able to remember the memories I am so fond of.  Who can't recall the first steps I took, my first dance at school, my graduation ceremony from college or who I am as I walk into the room.  This is truly a feeling I am still learning to grasp and understand but also trying to enjoy what I have in the present.

Today, I have a father who calls me during work so I can fix the little things on his computer (even though its like landing a plane blindly).  When I am at home listening to music and working, I call him when I hear a familiar voice like Hendrix, John Lennon, or Bob Dylan.  My birthday card this year not only arrived on time, but he's gotten soft and sentimental in his old age.  This past week, when national news indicated bad weather for the Chicago area, dad called me to say "stay away from the windows".  Tonight, when I heard The Animals come on, I called to say hello, talk about Woodstock and we laughed about my trip to New Orleans and the memories he had there back in the 60's.  These told separately seem obsolete to most, but together means the world to me and his memories.  These are the moments I am thankful for.  This is the father I know and remember.  This is the father that is still present, in the moment, living well and steady.  Instead, this has been the year where I have had to come to terms that I need to continue to "let it be" because that's all I can do and that's been the hardest of all.

Many thanks to family and friends as we head to the holiday year and for always being there for me, you don't know how much I am blessed and the impact you all have in my life.

A Temporary Pause

I fly home back to Chicago, thinking about my visit with dad, staring out the window, looking down to see the ground but all I see is black.  No blinking lights, no sign of clouds, just darkness.  I gaze out in front of me and I can't think about anything but the future.  As I gaze back at the window I think about my last visit.  For the first time in a long time, I had a visit that was not catastrophic to the outcome I had in mind, that I know will come.

I know I should be excited, ecstatic that symptoms have not progressed but I am always wondering, what about next time.  When will the shoe drop.  When I was home visiting, I couldn't help myself but look through pictures of the past.  Seeing my dad at his prime, alive, smiling, doing was he does best by running money through the Casino's  reminds me of the man he was.  The best pictures were seeing me with dad walking the dogs, dying Easter eggs, walking the Ocean City boardwalk,  being lazy on a recliner and opening Christmas gifts.  These are the moments I smile and remember that no matter what happens, I had a great childhood.  He might not have been the best husband, but no one could ever blame him as an absent father.  He was a man of many adventures but always had his children in mind.

I know the memory problems are there I am not in denial.  I know that I escaped this trip without much artillery needed, but I also know that is short lived.  I realize I can't always count on every visit that my father will be in the same state of mind that I left him.  I know that the clock is ticking and that every second is a blessing.  I am so fortunate to have this time with him, to experience his greatness and to understand and listen to his stories.  I couldn't imagine life without him.  This is my dad, and I am fighting until I can't fight any longer.  This is my stance even when it's dark, gloomy and hard to see.  This is family and I will fight even in darkness.