THE PRESENT OF PRESENCE

I used to sit outside with my Dad under a wooden gazebo nestled on the outskirt of the woods, in what would be the final summer and fall of his life. It was an "activity" for us. He was now a man in a wheelchair and the trip outside was a way for us to escape to a quiet, solitary space away from the bustle of the other residents in the "health center" as the nursing home referred to itself as.  

Previously, pre-Alzheimer's and debilitating Parkinson's diagnosis, Dad loved nature. He was an ardent Arbor Day supporter, perpetual National Geographic subscriber, and visitor of America's National Parks for family vacations. Being outside was like meditation for him. I believe he owned every nature book ever sold by Reader's Digest and Time-Life Books. 

There should be no surprise then that on our "trips" down the hall, in and out of the elevator, down the paved driveway to the yard and over to the wooden gazebo nestled on the outskirt of the woods led him to a contemplative place of peace and calm.

We would settle in and I would blather on filling the airwaves around us with talk of whatever things were going on with my children or verbally poke at him for thoughts on what he was thinking. Eventually, I'd run out of hot air and fall silent. And it was in this silence that the magical moments appeared. 

To fill you in, after a certain point, being able to determine Dad's eyesight or hearing was a wishy-washy act of prediction. He had long ago stopped being a reliable patient; falling asleep in the darkened room of the optometrist and no longer receiving hearing check-ups, presumably due to all the new check-ups he'd now receive post-pneumonia. So it was a little bit astounding to me when, on many afternoons outside, inside the wooden gazebo nestled on the outskirt of the woods, he would say, "Shh, do you hear that?" to the cars that were acres away buzzing across the highway below the mountain. Other times he would say, "Look! Look!  Do you see that deer over there?"  After thinking he imagined the deer, my eyes would adjust to the dappled light within the woods, and sure enough, there was a deer. 

In being quietly present with my Dad, he was able to settle into a place of peace. That peace allowed him to engage his senses in the ways similar to how meditation makes one more aware of their body. When everything was quiet, calm and safe, he revealed to me a present in being present. It would be in these moments that he would articulate that he was happy, that he loved me. These moments did not come as frequently outside the cocoon-like space of the gazebo, and I believe they came because of the magical nature that nature creates when we are truly present within its infinite beauty. A beauty that speaks to us in whispers but can be heard loud and clear. 

I wish for more gazebo moments with him, but they will never return. I also wish I had created more of those moments, instead of filling so many visits with a buffer of busyness in tending to this thing or that thing. Part of my "doing" was a way to look away from the reality of the changes his decline brought to us each week. 

In writing this post today, I sit alongside my own patch of woods on the outskirt of my home. I hear the cars buzzing across the road an acre from my house, the birds chorusing in the air, the hiss of cicadas in the trees and see the chair he once sat in, happily, in nature, next to me. 

My ask of you is this:

Today, if you are able, create a moment of un-doing. Of quiet and calm. See what comes to the surface of the silence. It might be listening to an album they love or sitting on the couch holding hands. 

The expression, "It's good to be alive" isn't "It's good to do alive."  Try being instead of doing. And let me know what you find. 

LOVE YOURSELF AS WELL

No duh, right? 

No, really. 

"Love yourself as well" is not meant to convey "Love yourself too". It is written with the intention that you love yourself as well as you love the person for whom you care. Think about that. How often is your caree on your mind? Constantly, right? Even when you are doing something that is not directly related to them, they are in your thoughts. Imagine if you flipped this reality and in place of your caree, your thoughts went to yourself.

Let me give you an example. So, you are in the middle of feeding lunch to your caree. Normally your thoughts are focused on chopping the food, making sure they aren't pocketing the food in their cheeks, adjusting the portions so they are not overwhelmed, and on and on. What if, in between one of those thoughts, you added one about yourself. Like... What music could I play right now that would make me happy? Or...Hmmm, tomorrow during our meal time I am going begin to have a green juice at the same time to help pump up my immune system. 

Where I am going here is that you can care about them and care about you. Be as judicious with scheduling your own doctor's appointments as you are with scheduling theirs. Read up on how to relieve caregiver stress as often as you read up on their illness. Schedule meaningful interactions with friends as frequently as you schedule time for their enriching activities.

It's the one for me, one for you idea. For each nice thing you do for them, do something as nice for you.

It's not an easy metal switch to make. There is the guilt to hurdle over, the conditioned thought patterns to sweep away and the habit of putting yourself on the bottom of the list that you'll need to eradicate. But I dare you to do it for just one day. Just one. Then build up from there. 

Love yourself as well as you love them.

And when you are taking care of yourself and allow pleasure to resurface in your daily life, you will be able to love them as well as you are able.

IF YOU SHOULD FALL BEHIND

I am going to play my Jersey Girl card but believe me, no one is more surprised than myself to be posting this video of..... yes, you know whose name I am going to say... Bruce Springsteen.  I have heard him describe this song as one about marriage, and certainly it is perfect for that however in hearing it tonight, I am thinking it is also perfect in the picture of caring for a parent or family member. There is certainly something in the pace of the song that seems to mirror the tone of caregiving in its slowest moments. The moments when quiet reflection finds you spilling over with emotion. The emotion from the slow loss. The emotion from the exhaustion. The emotion from not being able to save them in the way that they helped you grow and you now help them to die. Anyway, tonight I heard this song when my cousin posted it on her Facebook page and perhaps because she is the daughter of my Dad's brother, I have been put into a moment of thinking of the people who are no longer with me.

Have a listen and consider all the gentle love you are giving as you wait for your parent (or another family member) for whom you are caring, as they fall behind.

...That come the twilight should we lose our way

If as we're walking a hand should slip free

I'll wait for you... 

ย 

THE DANCE

That's me dancing with my amazing father, Joe, at a family wedding.

I became his dance partner by default when his wife, and my mother, died after 46 years of marriage and a four-year fight with breast cancer. In this photo, he is 80 and I am 40. During my dad's illness, he loved to dance. Once he heard a catchy tune he could not help himself from getting up and dancing. It was infectious to watch. He would dance with a smile on his face and not a care in the world.  

The more people I got to know with Alzheimer's the more I noticed a common trait. A large number loved to dance. And who could blame them? I too love to dance (albeit alone) with the music turned way, way up and literally dance like no one is watching. Even after not having heard a song in decades, I am able to anticipate which rhythm or lyric comes next. Dancing is invigorating, enlivening, and fun. Dancing is a joy. I will explore the phenomenon of Alzheimer's and music more but for today, I just wanted to put this little story out there. 

Music has been an integral part of my life. When I was a little girl, my dad would have me stand on the tops of his work boots as I held his hands and he would move me around the living room floor to the sounds of something most likely off a Reader's Digest 8-track compilation. I played the piano and clarinet and having been taught by a nun, yes, I did have my knuckles rapped on when I did not know my scales. This may explain why I am now an appreciator of music and not a player of music. From there, music was the soundtrack to my teenage life as I lived to attend concerts and spent all my babysitting money on albums. I was a journalist for a rock newspaper, once upon a time. Time marched on and some freedoms of youth were tempered with the responsibilities of working regular hours and a child. Music remained in my life, just not at the same volume.

That volume was turned back up when I found myself needing to escape from the stress of watching my mother fail to conquer her cancer. Bouncing between my own family and her care in and out of hospitals my car became a place of refuge and release of the emotions which were simply larger than I could process. I would find myself driving and attempt to disappear in the loudest music possible. Speakers were blown and to this day, so long as my speakers are intact, I have a gauge for the level of stress in my life. 

If music was so powerful to me, what must it be like for others? For my dad, it also remained powerful. Unable to recall who the president was or what he just ate for lunch, hearing the music of his youth was like flipping the "on" switch of his memory. His eyes would light up. His lips would start moving. His mood went from flat to animated. Get him to an event or wedding and he was not going to sit in his seat very long. He would even dance to current day songs, the ones he used to describe as, "that music you can't understand what they are singing". So long as it had a beat, he was on his feet. 

When at the parties in his assisted living home, surrounded by other memory impaired residents, I realized that this dancing was not unique to my dad. It was like a magic elixir that allowed bones to stop aching, energies to increase and happiness to be rediscovered.

If you are caring for someone with a dementia, have you noticed anything similar? Are you interested in trying this theory out for yourself and your caree? This is really just the introduction to this topic but seeing as today is a Friday and the weekend is upon us, it seemed like an opportune moment to go about instigating a little bit of joy. Let me know how it goes....

THOUGHT ON GENDER IN CAREGIVING

I was recently in a conversation when someone brought up the topic of gender in caregiving. I never really paid attention to this matter, beyond realizing that I was a stereotypical oldest daughter caregiver. Stopping to consider the topic as I drove home, I have to say I find it frustratingly limiting and find it creates a predisposed bias toward the expectation that certain roles will be filled by the female of the family. Gender discrimination is like race or religious discrimination. We are all people and those who choose to see things through any filtered lens (be it gender, race or religion) are limiting themselves from seeing the full spectrum of our shared humanity. Why can't it be that family caregivers are able to be just that, family caregivers with each member actively participating in the care of the ailing member? It is a curious exercise to consider where you and your own family fall within the unassuming bias of gender when it comes to assuming which sibling will give day-to-day care vs. which will manage finances. Do labor divisions need to exist at all? I may have been guilty of this bias myself when I, for too long, did not even consider that my brothers could help me. Why was mine the job that needed to be walked away from order to give full time care? Why was I the adult child put in charge of our parents care? In retrospect, it may have been simply expected of me. It all moved to fast to even think about at the time.

My question to you today is... when you stop and think, are there any tasks that could be more evenly distributed within your family when you remove the labels of male and female and pull back from assumed expectations? 

THE DANCE BAND IS ALMOST READY

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Hello.  Welcome to The Longest Dance.  I am truly so glad you are here.  You may have heard about me from a friend or are just looking to see what the story is, either way, you are here and that is all that matters. My intention is to have a spot for us to share thoughts, ideas and inspirations.