The Faded Man in the Mirror

I usually have a witty comment to start off my blog or a quote or a memory that leads to present day, but I starred at this blank page for hours, days even and nothing was coming to mind.  I don't have it in me this go around.  It's being clouded by the reality of my last  visit with my father. The man I know is fading. He looks different, acts different, talks different, thinks different.  He's slowly slipping away

There are still moments where he shows up, present but it's quick and if you aren't watching you will miss it.  He hugs the same, loves the same, but he is a faded mirror image of who I know.  As I walked inside his home this past visit, the air inside told me what I was about to face.  The house was not clean, the food was rotting and the mind was deeply confused. We went from minutes to remembering to seconds of understanding.  In a blink of an eye, the Alzheimer's progressed and took over my fathers mind and well being.

In a split second, I went from a daughter to a care taker and provider to get my dad the help he needs.  In that moment, I realized I have been preparing for this for years, but this was the easy part. During my years of planning, I did not realize that the hardest part would be mourning the death of my father.  I under estimated how this would feel, what emotions I would be going through.  Each day I wake up, I try to emerge myself in work or staying busy but it doesn't solve anything. I talk to my brother once a day hoping just his voice makes the day better and for a moment it does. There is something comforting knowing you are not going through this alone, he knows the dad I know.

The difference between a disease that kills the body versus a disease that kills the mind, is that even though you are still living, your mind and who you are is gone.  You are essentially alive but dead.  It's a living and breathing form of a person you once knew.  It's a terrible way for an Alzheimer's patient to live and a terrible way for loved ones to watch.  I started this blog a few years ago with the idea in sharing what Alzheimer's can do to a family and to raise awareness about this disease that affects millions of people across the world. There is no cure, no prevention or medicine to slow this disease down.  This is our next epidemic we will face.

My next journey is finding the best care for my dad and navigating through the health system and government bureaucracy. Our goal is to get him in a home where he is safe, fed daily and cared for by those that specialize in memory care patients. This process came a bit too soon for my brother and I but we are going to get through it. We make a great team.  I promised my dad a year ago that we would drive down the Pacific Coast Highway and though he may not remember the trip, I know he'll love it and I'll have memories of our journey. If there's one thing I can encourage friends and family to do is not take your loved for granted.  Call, visit, share stories, connect on a level that's not over text. Life goes so fast, enjoy the times you have with those you love!

Driving Up the Pacific Coast Highway

It's been a while since I have posted to my blog and shared an update.  I call that a blessing because to me that means my father's memory has not gotten worse, we are coasting.  These little things are huge gifts in my world as I take on each day.  These are the good days that I cherish even though painful at times, I know things could be much worse.

I was recently in Scottsdale, Arizona for a work conference and it gave me the opportunity to rent a car and drive down to Tucson to see him.  As I pulled into the driveway there dad was waiting, smiling, like a father coming home after a long day of work, his daughter anxiously watching out the window so she can run outside and hug him.  You could feel the anticipation as I got out of the car and he grabbed onto me like it had been years.  In an Alzheimer's world, that means so much more than a hug, but it means he remembers me, his daughter.

While I visited I did the normal things I do when I show up within the first few hours.  The old standby memory tests, the looking around the house for cleanliness, the opening of the refrigerator for nutrition, and the driving test.  When dealing with someone that is in their own denial of how they are doing, these tests give you so much information on whats going on in the brain.  The results give me a glimpse of my father's livelihood and where we are at with the disease and of course he always asks me for my diagnosis before I head to the airport.  A sign he is still aware of what we are dealing with and a question that if he didn't ask, would be telling of his state of mind.

During this trip we spent, as we always do, a night out on the patio drinking wine and listening to Bob Dylan.  Dad reminisced to the memories of this music and his time in San Francisco in the 60's.  He talked about the friends he made, the trips to Sonoma and Carmel, his casino days in Lake Tahoe and his time in Newport Beach.  This is when I got an idea.  A road trip.  Not just any road trip, but the chance to spend two weeks traveling with my father to the places he fondly remembers.  A chance to take pictures and document a unique experience with my father, one last trip before we call it.  An opportunity to use a recorder to grab the stories he remembers from childhood and his days in California while we drive.  This will be a trip up the Pacific Coast highway that we will never forget. This will give me an experience I know I will never regret and allow me to spend time with my father while he can recall the past and experience the present (although cloudy at times) in this short window.  It will also be a chance for me to remind dad, when he can't remember who I am, this experience we shared by pulling out the pictures and recordings to ease his confused mind.

He was so excited when I told him what we were doing, I tasked him with projects around the trip to keep him busy and to get his mind moving.  I do have to remind him we are doing this every time we talk on the phone but I get the same enthusiasm every time.  It's like reliving Christmas all over again.  As I prepare for the trip in October, I can't wait to see him in his element, blasting Bob Dylan in the car and just cruising down the Pacific Coast Highway, experiencing life through dads memories while I have them.

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.