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.

A Convo Through Mail

Dad - See Shane talking on the phone?  He was talking to me!  This was last year I think when he was in Philly hanging out with some of his friends.  We sometimes have these late night calls when we think we can solve the worlds problems.  We are so excited to come visit and I can't wait to catch up and relax with the two of you.

Love you,

Des xxoo

When I last visited my dad a year ago, I realized how excited he was to get the mail everyday. This gave me an idea to send him a postcard once a week with a different picture and a story that goes with it. Some would be of family, others would be of travel and a few of friends he has heard about but has never met. I will mix it up and always send it on the same day of the week so he knows when to expect it. Each week I  post the postcard and message I sent to him to track for myself, my brother, friends, family and for others that I hope to inspire to encourage to reach out to loved ones.

A Convo Through Mail

Dad - I just got back from Florida visiting Mommom, Poppop, Tracey and Maureen before I traveled further south to see mom.  It was so great to hang with them and be in the kitchen with Poppop.  I also really enjoyed Palm Beach while I was there.  It's actually a very happening area and a mix of young and old.  A lot of money in that town ;)

Love you,

Des xxoo

When I last visited my dad a year ago, I realized how excited he was to get the mail everyday. This gave me an idea to send him a postcard once a week with a different picture and a story that goes with it. Some would be of family, others would be of travel and a few of friends he has heard about but has never met. I will mix it up and always send it on the same day of the week so he knows when to expect it. Each week I post the postcard and message I sent to him to track for myself, my brother, friends, family and for others that I hope to inspire to encourage to reach out to loved ones.

Waves of Emotions

There are moments when I am easily distracted at work, the gym, or at a dinner when something clicks and reminds me of a thought, a reminder of a great memory of my father.  It hits like a wave coming at you when you least expect it.  At first it feels good like a rush going through your body, cold but refreshing, exciting yet on the edge.  Quickly though that fades, the wave hits and it seems loud but oddly quiet, risky but frightful, finite but everlasting, beautiful but suffocating.  All of these things happen when I think of dad.  All of them come rushing in and at times I lose control.  I have to run to the bathroom to let it out, or bite my lip until I can get somewhere I can breath and release.  Yesterday it was in my office, when I quietly closed my door.  Tonight, its in my living room.  This is all very strange to me and not something I am use to.  Those who know me well I am a very private person and have been taught to hide emotion so its moments like these I feel the most vulnerable.  To even put my fathers story and my emotions out on a blog, I never would have thought I would ever be so open.

I realize it doesn't take a family who has memory lapses for a person to relate to how I feel.  We all have emotions that come through like a tsunami that crashes at the core and god knows a women's hormones doesn't help with the roller-coaster we are already feeling.  It's hard sometimes to understand why there are moments when they hit the most.  Today, I booked my flight to Tucson to see my dad with my brother and as I look forward to the trip, I know I will be disappointed when I get there.  I know, its easier to deal with things when you are from afar.  It's easy to pretend that things are okay, that life moves on and the next day approaches.  It's only during a phone call that I am reminded, but its not as surreal as being faced in front of what is really going on.

I am excited to see my dad and hang out with my brother.  I can't wait for us to be together in one house, cooking, drinking, laughing, listening to my dads favorite tunes he grew up with.  I know however it's a ticking clock, a bomb that keeps lighting but doesn't quite hit the dynamite.  I know I will find out more about this disease when I land and how its progressed.  I will smile and pretend that everything is okay so that dad doesn't feel judged, confused or that he has lost his position in the ranking of this family.  I will collect my information, calculate the loss, total my damages and come back home with ideas on next steps.  This is a process I am getting way too good at. So as that wave approaches and I am sitting in a meeting, at the gym or looking out at a beautiful city over dinner, I will not hold my breath but hope that I will survive the water that is about to crash.  I accept what it brings and hope that I have the strength to float back to the surface, holding on, waiting for the next one to hit, knowing that I have prepared to survive this.  I must admit however, at times, the wave does knock me down, catches me at my best, pulls me underwater where I am almost out of breath, but somehow when I least expect it, I always find a way to pull myself back up to the surface looking back at the wave that has now rolled softly onto the shore.

Premature Transitions

When I was little my father use to have to tuck me in at night, lay beside me and read.  If by chance he moved while I was sleeping, I would grab his arm and make him stay till I knew I was safe, fast asleep and dreaming.  He would oblige, lay his head by mine and run his fingers through my hair.  Sometimes I would ask him to hum a lullaby so I could hear his voice as I started to drift asleep.  He would whistle our favorites like the Beatles, the Doors or even Cat Stevens.  The gentle hum, even though not always in tune, would reassure me he was there, close by, and that I was not alone in the dark.

As an adult, I no longer have the need to have my father beside me helping me through the night, but its him that needs me. It's a weird transition to become the adult to your own parent.  It's a change in dynamic that isn't offered but that must be taken in order to keep everything in check, together and in peace.  As weird as it felt to switch roles, I welcomed it.  I instinctively knew this was my role to take on almost like a mother does with their newborn child.  There is not a thought, no hesitation, no second guessing, you just "do".  We switch roles as if it was a natural progression in life.  We don't discuss it, we don't signify it, we just move forward in the new roles we have been given.

I call to check in, make sure he has made it home and keeps up with his weekly errands.  I call the doctor when he makes a visit to make sure he showed up and to get the "real" answers to the progress or lack there of to his health and memory.  I ask him about his medication, has he filled his prescriptions and is he getting enough vitamins.  I lecture him on reading and keeping his mind busy, exercising regularly and socializing a bit more with the neighbors.  I encourage him to take on new projects, set goals for the week and to not forget to call me once he has landed and gotten home safely.  I take note of times he has been late, not remembered to call, hasn't eaten the vegetables he should or the smoking habit he quit but decided to pick up again.  At 32, I had no idea this responsibility would be handed to me.  I always thought I would nurture and look after my own children before one of my parents.

This is what I do know though,  I am strong and I have found the core of what it means to be born a woman.  I was built to handle this and anything else that might come up.  They say you are only dealt with what you can handle and with that saying I take grace knowing its a challenge I accept.  I have put my faith in not only myself but the fact that my father needs me.  Not just my love, he has that unconditionally, but the nurturing and humility that I can provide in moments of despair and need and as a woman I now know we were built for moments like these.  Whether its our children, our parents, our friends or strangers who need us, as women we are differentiated in this aspect.  Things happen knowingly, you have to believe that there are lessons to learn and things to grow from when they are presented.

At night, when I have too much on my mind and I can't sleep, I turn on the music he would play for us.  The gentle sounds of something familiar makes me relax and puts me in a place I remember well.  A place that shaped who I am and who I am still shaping to be.  It takes me back to my dad lying beside me, humming as best he could to the sounds of the past, the past I envisioned for him which is the past I now recall.  It's my way of sleeping peacefully and reassuring myself that I am still the child within.

A Convo Through Mail

Dad - This picture actually cracks me up.  Last year a few of us went to a Kentucky Derby party (hence the crazy hat).  Later we ended up leaving the party to head to another bar.  We ended up walking by a Bentley dealership and there was a private party happening.  We just walked on in like we belonged there.  Genius!  They had amazing cars on display and I couldn't help but have my calendar girl moment on a beautiful car!

Love you,

Destiny xxoo

Calling on a Memory

One of my most happiest moments during the day is talking to my father on the phone.  I look forward to hearing how his day has been and what he has been up to during his retired life.  It's also secretly a way for me to check in on him being miles and miles away.  My dad continues to still make me laugh and his sense of humor has always been witty but cynical.  When I was a child, he would find ways to make me smile.  Whether it was dancing with me to the Beatles in the living room or surprising me with a puppy on Christmas day, dad knew how to make his little girl happy.

When I talked to him this morning, coffee in hand, he had me laughing so hard I was tearing.  To hear him tell me how hard the past two weeks have been during his retired life makes me realize how long he has been out of the workforce.  His newly installed tv stopped working in one day, his car that he has brought to the mechanic over a dozen times still continues to have the same problem, it actually snowed in Tucson, and he has gained 8 pounds even though his appetite is down to one meal a day!  You would have thought his whole life came crashing down.  He was so exhausted to relive the stories I couldn't help but laugh.  I briefly mentioned the postcard I had sent to see if he received it, but he had not.  I was curious to see what he thought of Shane's stained sweatshirt!  I left that conversation feeling good, happy, confidant that he could retell his stories of the past few weeks so clearly, so vividly, I was happier when I got off the phone then when I called and heard his voice in the first place.

I called him back tonight to see if he received the postcard I sent him knowing the mail had at this point been delivered for the day.  Unfortunately, he didn't remember talking to me about postcards or recall a few other topics we discussed.  My heart sunk and my previous thoughts that my father today had made progress, quickly disappeared.  This shouldn't be a surprise but yet it continues to surprise me.  This is the norm as I continue to age and as my father's memories, whether long or short term, fade. I can pretend that this doesn't exist, but moments like these remind me what is reality.  I escape by writing and by wishing time stands still, but its silly thoughts like these that allow me to hide from my own self-doubt.  In these moments, I think back and remember the positives of these conversations.  I fall asleep smiling for the things he does remember and the laughs he continues to get out of me.  This is what makes me keep smiling, sleep soundly and constantly look forward to the next call to hear his voice and his troubles as a retired man in sunny Arizona.

A Convo Through Mail

Dad - Thought you would enjoy this picture of Shane and me.  This is when I went to visit him in the Poconos this past September.  We had so much fun building bonfires, drinking, cooking, hiking, swimming and just hanging out.  Weather was perfect and the cabin was great.  Shane had a hard time keeping the wine in his mouth ;)  I am sure, as your son, this doesn't surprise you!

Love you,

Des xxoo

A Convo Through Mail

Dad - This is a picture from the wedding I was just at in the Dominican Republic.  I had a wonderful time and you cannot believe the different traditions they have out there.  Their weddings go till 6 am, can you believe that!  The local wedding was beautiful and it reminded me of vacations you use to take us on as kids.  I miss you and can't wait to visit you soon!  I think about you everyday.

Love you,

XXOO

Des

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