Braving the unknown…

Since the beginning of the year I have stretched myself beyond my usual horizons, accomplishing things that I never thought I would do.

Actually this trend started out of necessity after both folks died in 2009.  My emotional recovery included learning how to take care of myself in completely different ways and part of that included getting a job.  I had been a massage therapist for years and my hands were no longer able to work enough hours to support myself and the mortgage payment I inherited.  There are benefits to having a regular paycheck.  One of those is the benefits that came with my job and enough $ to set a bit aside for ‘doing fun stuff’.

The first couple of years ‘fun stuff’ was vacationing – I hadn’t done that in years and thoroughly enjoyed being able to take a day or several off and travel – I love to travel!  This year has been about tackling bigger things and expanding myself into new experiences.

So, I took a ballroom dance class in January.  I have never danced in my life, ok, so I swayed in rhythm to music playing and maybe ‘shook my grove thing’ once or twice but danced?  Nope, not ever.  That was a hugely brave thing for me as I’ve always been terrified to be seen.  I’m not the svelte chick and my butt was always a source of ridicule or shame so exposing it and moving it in a way to draw attention to it – not exactly the thing I dreamed about doing.  But (pun intended) there I was, dancing and twirling and Rumba-ing my way accross the dance floor for 8 weeks!

Next up was piloting a plane.  Yep.  See, I have a fear of heights and I was gonna go up in a teeny-tiny plane and pilot the thing.  And I did!!  Exciting, terrifying and something I’m 90% sure I’ll do again.

Pretty sure that was the craziest thing I’d ever thought to do but you know what?  After tackling these two fears, I have found that I’m much more certain that I can accomplish anything I set my mind to – anything.  I have found that my passion for living is back or maybe it’s found for the first time, I don’t really know or care.  I just want to find old dreams and live them or create new dreams – which ever it is, I will be living them in full technicolor glory!

 

Dad

Caregiving for dad was, unfortunately, an exercise in “not right now”. This was because mom’s Alzheimer’s loomed before us and seemed to get in the way of everything.

Dad’s mind stayed with us until the very end and because it was possible to converse and rationalize with him, we both set aside things  in order to tackle the more difficult issues of mom’s ‘quicksand’ memory; the slippery, unstable and ever-changing reality that we lived with.

He and I both wanted to share his life’s stories and memories. And I did get lots of tidbits that make a wonderful kaleidoscope in my mind of my dad. I have no idea if the images or memories or stories are factual, but they are the last pieces I gathered that now ARE my dad.

He grew up in Chicago, the south side and Al Capone was one of the heroes of his youth. An icon of the ‘rough and tumble’ boys that made up dad’s peer group. I think his mom, my grandmama, called them a bunch of hooligan’s.

Dad shared stories of his experiences in WWII, his years of top secret work designing a building and testing missiles for the govt., stories of church work and missionary travel; and he shared his love of steam traction engines, photography, flying (even though he got dreadfully airsick), good coffee and people.

We both wanted to have the time to record stories and memories and the activity of setting up a recorder, and doing something out of routine was often very upsetting to mom. That would require us to stop and find a way to deal with her. Dad’s option for a long time was to explain what was happening in hopes that mom would understand. If she didn’t understand, he would explain it over and sometimes over, until she capitulated and he collapsed with exhaustion.

I heard most of dad’s stories in the background when I was occupied with mom and he was telling them to someone else.  I remember the first time he shared a story of him having ‘courier status’ and having to travel to Washington DC with the briefcase handcuffed to his wrist and I suddenly was enthralled to think that my dad was a kind of spy.  After all it was the cold war and he was transporting missile technology/reports back to Washington DC so why couldn’t he have been a spy?  Kinda made me laugh as some of the favorite movies that dad and I watched together were James Bond 007 and Star Trek (later almost any scifi-fantasy was a thing for us).  So here was my dad possibly an 007 in his own right and a builder of missiles that traveled through space!!

As he was telling this experience, he mentioned that the stewardesses (politically correct for the time) on the flights had gotten very familiar with him as he was a ‘frequent flyer’ pioneer traveling often every week and, a usual, they were calling him by name.  This intrigued a locally famous person sitting behind him or across from him, I don’t remember which, and caused them to quip, “So, who are you that everyone knows you?”

I remember being distinctly struck because my first thought was, we’ll he’s just my dad and I really had no idea who this human was telling this story.  He was lots of things to lots of people and I really never knew most of who he was and what I did know, was ‘just my dad’. Now, those of you who were privileged to know him much longer than I know he was not ‘just’ anything.  He was a deep, man who loved his God, church and fellowman to startling levels and as his daughter I can tell you that he loved his family that way too.  I wish that those of my friends who only got to meet him after moving to KC, deep in the ravages of Parkinson’s, could have seen those depths that he could no longer express due to his frailties.

He yearned to have people around him and even though he drifted off sometimes repeating himself, or napped while people were visiting, or got occupied with mom’s struggles he always asked me to invite people.  And I did.  And to those of you who took the time to be a presence in his life as an extension of your friendship with me and to those old and new friends who were able to make dad and mom a priority those last two years; Thank you.  There are no words to express what a gift your actions were to a little old man with Parkinson’s who wanted nothing more than to love you.

 

 

 

Still healing…

So the first year after the folks died, I was numb.  I felt like I was sitting at the bottom of the ocean or wrapped in cotton, or any number of metaphors.  Desperate to feel, I vacillated from decision to decision on a mental merry-go-round or rollercoaster or some kind of carnival ride that was all distortional and eerie instead of fun and titillating.  No matter what my mental state, there was no feeling really to go along with it.  So I didn’t make any life altering decisions (on the advice from those much more knowledgeable about these things).

The second year (the one just passed) I began to rise to the surface of the ocean.  Still numb but the tingles of pain let me know that the numb was beginning to give way.  Energy began to flow through my body and with that energy, feelings and a tiny spark of desire that resulted in more physical activity – daily walking, more socialization and dance.  I think my head is finally above the water line.  And that has brought feelings that perhaps still do not need to be acted on.  Patience is asking to be practiced again.

At the very beginning of this third year, I am feeling the restlessness again and I’m unsure if it’s a true call to make a shift in my life or if it’s the spark of desire yearning for flame and seeking kindling.  What I think, at this moment, is that I have a marvelous opportunity to gather appropriate kindling to feed this desire without sacrificing something precious as has been my habit in the past.

Consciousness about my feelings, deliberateness with my actions, wisdom and temperance to guide my decisions; this is 2012 – so mote it be.

Why are the paragraphs in my head

So much more profound and lyrical and grammatically passionate than the stumbling around I do with the written word?

Today I think I am nothing without the energy exchange of talking with another person.  Bouncing ideas around, give and take, or often just controlling the flow, it doesn’t matter what’s happening; my writing seems to lack the ease and understanding and depth that comes from dialogue.

When I think what I want to say, it’s awesome and when I write it, it’s nothing but a bunch of fits and starts and hesitations that read awkward and leave people scrambling for understanding/comprehension.

bleh

Caroling and memories…

Today is Pearl Harbor Day.  It is also the anniversary of the day that my folks and I moved in together for what would be the last two years of caregiving.  Both of my parents were veterans and proud to have served their country.  I wish I had more stories of their respective military experiences…

It is also the beginning of the Christmas season and for both my folks, dad especially, this was a favorite time of year.  Dad absolutely loved Christmas hymns and carols the story of the birth of Christ being a central point of his life and life’s ministry.  Mom, a gifted and wonderful musician, could bring to life the magic of every Christmas song and by doing so, encouraged everyone who ever heard her play to sing along even if they were melodically challenged – lol.

It is also just a few days before the anniversary of dad’s death.  And one of the moment I will never forget from that week was spontaneously singing a few carols to him in the hospital with three of my dearest friends.  I don’t remember what we sang except the last song was ‘Silent Night’, dad’s favorite, and as we sang, the tension visibly left his face and his breathing calmed and he looked absolutely beatific.  None of us actually know how we got through singing for him unless you count the angels that were singing with us.  Had to be angels as we never sounded better than singing that hymn for my dad.  The nurses were all in tears and the hospital floor was completely quiet when we were through as if in acknowledgment of the profoundness of that moment and the gift shared and received.

So today I am taking the afternoon off work to give back to the dementia community and going caroling with a few friends.  I didn’t get to do this last year and missed it tremendously.  I cannot tell you how much it warms my soul and opens my heart to sing for these dementia patients.  It’s easy to see the unraveling memories and to experience the losses but when we are singing for them, we see eyes light up and mouths move with words that maybe ‘should’ be forgotten but the music brings the words back and for a fleeting moment we are all present and together sharing a moment.

Sharing carols and gathering memories -

Tough love

I thought I knew a lot about love before caregiving.  And I’m pretty sure I did know about love.  I have a life full of loving experiences both the unmitigated joys and the heart-breaks.

I remember hearing the phrase ‘tough love’ as it applied to efforts to keep young people out of prison.  A concept that included bringing the hardships of prison life into their reality in such an intense way that it shocked them into turning their lives around.  Wikipedia defines it like this: tough love is an expression used when someone treats another person harshly or sternly with the intent to help them in the long run.

My time as a caregiver changed my concepts of love, especially ‘tough love’.

I learned that love is tough.  The love between my mom and dad and the love between them and me was/is tough.  Unbreakable tough.  When I was a teenager, and a troubled rebellious teenager at that, I hoped that something would break the love between us so that I could be free of them.  However, as the years passed I became immensely grateful that their love for me was tough, unbreakably tough.

It was this foundation of love that allowed me and even compelled me to take on the role of caregiving.  I could not do otherwise.  As I saw them buckle under the burden of age and disease, I could feel the strength and stability of that foundation of love and knew that I had to take care of them and love them through the end of their lives as they had loved me through the beginning of mine.

Alzheimer’s and Parkinson’s can really strain the love between mother and father and daughter.  But as I watched them love each other through the ever widening chasm of disease, I learned how tough love can be.  And the clearest moment was watching dad, his frail little body stabilized only by his walker, bend down to whisper in mom’s ear the last words he ever spoke to her.  I deliberately walked away from them to preserve what privacy they could create in an Alzheimer’s unit filled with nurses, patients, a blaring TV and watched as he whispered to his beloved and kissed her on the cheek.

Tough love – unbreakable love.

Ministry, music and the piano

Mom played the piano.  To be even more precise what she did was touch souls and bring healing with her gift of music ministry and her favorite from of expression for that gift was the piano. I remember my childhood naptime was filled with piano music as that was mom’s practice time.

In the beginning of my caregiving journey I would sit on the piano bench with mom during church services and help her keep place with the worship service and play the correct hymns and play for the right number of verses.  Her gift of ministry was still so profound.  The way she touched the piano and coaxed music to wrap itself around people’s hearts and minds supporting them while they sang was such a blessing.  That was true for congregational singing as well as her ability to accompany any soloist.

As I learned to sing at my mother’s knee, which made me her favorite soloist and we shared music at our local congregations for as long as possible.  I remember singing once with someone else accompanying me and mom was upset until I told her that part of giving ministry was to let all the musicians have a chance to share their gift.  As that was something she believed deeply in her soul, she understood and immediately turned to thank my accompanist.  As is also the case with any Alzheimer’s patient, the conversation didn’t stay on track past that one moment.

One of the best ways to calm mom down when she became agitated was to ask her to play the piano.  We spent many, many days listening to the same pieces of music being played over and over again.  One of the greatest tragedies of Alzheimer’s was the eroding away of her ability to play.  I distinctly remember the first time I heard her playing something she knew by heart and make a mistake that she couldn’t correct.  My heart broke.  I heard her get up from the piano and as I peeked around the corner from the kitchen, she was putting all the music into the piano bench.  I don’t know if she was aware of it or not, but it was a sign to me that she was putting away music from her life.

After that, she still played but the days of it being difficult out weighed the days of it being easy and the numbers of pieces she could play got smaller and smaller.  Learning to play new music was no longer an option and I had to search for old hymnals or old music from her youth that were still familiar to her.  One of the saddest memories was singing through Christmas music with mom and her not remembering a favorite song saying, “I don’t like this one” and me  understanding that it was because she didn’t recognize it anymore.

Mom played the piano for anyone who would sit still long enough.  This brought great delight to both her and those who had the opportunity to listen.  We had Tibetan monks visit us once and mom gifted them with music that brought tears to their eyes and a healing to all of us.  She was also a big believer in teaching young people who had an interest in music to respect and enjoy the piano.  I remember once a friend and her young son came to visit and before any of us knew what had happened, mom had him at the piano showing him how to touch the instrument and make loud and soft sounds and by the time the visit was over he wanted to come back and take lessons!  Children and music – mom was a natural with both.

I took her to as many concerts as possible the last few  years and she would often conduct from her seat in the audience.  I, of course, was mortified trying to stop her or at least make it unnoticeable but after a few failed attempts realized my stopping her from her own special brand of enjoyment was far more noticeable and distracting.  The graciousness of the performers and conductors/directors always astonished me as they came up to her afterward and said how much they enjoyed her enjoying the music and mom would tell her stories to a new and rapt audience.  I never really stopped being concerned that she would embarrass me or herself (thereby embarrassing me) but I did learn to trust that people could understand that her struggles with aging had not diminished her love of music.

Although mom and I didn’t always agree on music styles, she left me with a deep appreciation for a wide variety of music blues, rock, gospel, classical, jazz, R&B, celtic.  But the piano, that is my first musical love and although I no longer have naptime, it is the music that puts my worries to rest.