Moving Forward

Endemic:

characteristic of a particular place, or among a particular group

Sharing:

We are now a world community. We can share with the entire planet – even those in space – 24/7 – with just a  “click” or “tap” or our voice.  First, we shared documents then music files and then our thoughts on any number of subjects. Now we post photos and videos and intimate details of our daily lives – sometimes to our own detriment.

But, to some, this shared world is not new – it is a way of life born from necessity and continued as a cultural norm. For some, sharing is endemic to the geography of their lives. Islanders have always lived in a sharing community .

If you live on Peaks Island, Maine, you learn to share from the time you learn to walk. When you are trudging through snow or carrying groceries, running to make the boat, someone will offer you a ride. You can call a friend to check on the dog if you are unexpectedly delayed. Don’t have the tool you need, ask at the Peaks Café.

There is an island listserve that announces art openings, school events, thanks you’s, lost dogs, found glasses, rides needed or offered or the start of a cancer support group. Recently, a friend needed a high chair for a visiting niece and within 15 minutes received 14 responses – including delivery and a story of the chair’s history.

During the past year, I was a recipient of the islanders culture of sharing, as we continued the search for a place for my mom. When I needed information about various nursing homes and assisted living facilities, islanders shared their experiences, penned reviews, supplied contact names and emotional support. When I needed home care providers, high school friends offered names of caretakers they had used or even offered to come themselves.

When I needed a car – everyday for a week – to visit the rehab center in the morning and nursing homes and assisted living places in the afternoons, people I knew (and some I didn’t) entrusted me with their vehicle. No one asked about my driving record or insurance. Each person trusted that should anything untoward occur – I would behave as a member of the sharing community and act responsibly.

However, I did have to learn the island system for locating a car in the parking garage. You have to denote whether it is parked  “Inside/outside” – the specific entrance on a numbered level – and whether you can see the whale wall or the restaurant.

 Sharing My Home:

 Respite:

Time out, break, recess, pause, hiatus, suspension, rest period, relief,

Many of my friends are caring for a parent or relative or spouse.

  • One is providing hospice care to her mom as she approaches the end of life:
  • Another is monitoring the care of her aunt and dad located in another state:
  • Another is alternating with her other siblings the home care of her parent.

Many of us do not live next door to our parents or even in the same state. We do not have lives that allow us to stay home to care for another. The Portland Press Herald paper ran a series called: Challenge of our Age. A woman was featured in an article about a woman who left her job and became the full time caretaker of her mother who had been diagnosed with vascular dementia and Alzheimer’s. She acted out of love; she had no regrets; but she was exhausted – depleted.

http://specialprojects.pressherald.com/aging/part-2-liz-havu/

What caregivers have in common is the need for respite.

Throughout the past few years, I have left my home and studio for longer and longer periods of time to help care for my mom. While in Maine, friends provide housing and support. They give me a key and keep the porch light on. They make up the bed and leave dinner. There are no expectations (Well, sometimes the dog wants petting or letting out …)

I now provide respite care for my friends traveling up and down the coast. I leave the key, clean sheets on the bed, soup in the fridge, and if I am there, emotional sustenance.

I have even developed a ritual with one friend who returns often.

We eat a healthy, home cooked dinner. We then head to the local restaurant to procure 2 pieces of cake: chocolate with peanut butter frosting and carrot with cream cheese frosting. We go so often that the waitress points us to the cooler and lets us select our own pieces. We take our cake home and return the empty plate on the next visit.

Sharing the Fear:

My mom watches the news religiously. Monsoons in the Phillipines, tornadoes in the Midwest, floods in Colorado – 1000’s are left homeless. Even with all the assurances from our family to the contrary, she is afraid of becoming homeless. Her anxiety prevents her from sleeping.

Each time I visit, she asks:

  • What is going to happen to me?
  • Where will I live?

Gloria Steinem, feminist icon, in an interview many years ago when asked her greatest fear, she replied:

  • I am afraid of becoming a bag lady.

She echoes the refrain I hear from friends as we grow older. Many of us are single or have no children. The fear of being homeless resides deep in the recesses of my own mind.

I never realized how brave my mom is. She learned to use a walker after recovering from her broken hip. She agreed to in-home assistance with cooking, cleaning and meds after her broken pelvis. She endured weeks of rehab after her broken arm. After months on waiting lists, she will be moving to an assisted living facility that is 23 minutes and 18.1 miles from her home. It was a difficult decision made easier by the fact that there was only one bed in one facility that was available.

I am uniquely qualified to help with the transition. I have been a professional clutter buster and personal organizer for 20 years. (Actually, according to my mom, I started young. I was bounced out of nursery school for rearranging the cots during recess. In my defense, they probably needed it.) http://jotheclutterbuster.com/modules/publisher/item.php?itemid=53

Mom taught us to share with others – no matter how little we had.

She will decide what she wants to take with her to the assisted living place. She will offer items to friends and family who have made specific requests.Tchotkes

We will go through her apartment and identify items to be given to homeless shelters. We found an organization that accepts furniture to give to families that were previously homeless.Truck full

I will store the photographs until a later time when we can sort and label. Then I will scan them and make disks for everyone.

I am in awe of her willingness to focus on the sharing and not the loss.

 

Sharing the Heart:

I will arrive in Maine on the Solstice. The word solstice comes from the Latin words for “sun” and “to stand still.” In the Northern Hemisphere, the solstice days are the days with the fewest hours of sunlight during the whole year.

winter-solstice_10792_990x742

During the darkest months, I stay in bed later in the morning. On Sunday mornings, before going to Quaker Meeting, I listen to “On Being” hosted by Krista Tippett. (In my opinion she runs neck and neck with Terry Gross as an insightful interviewer.) During her program entitled: Contemplating Mortality Tippett interviewed Ira Byock MD, a palliative care specialist. In his book: Dying Well: The Prospect for Growth at the End of Life,  he distinguishes between the concept of the good death and actually dying “well”  – whole. www.onbeing.org/program/transcript/4655

He offers 11 words that he feels are important to maintaining or repairing relationships to use during any transition:

  • Please forgive me
  • I forgive you
  • Thank you
  • I love you

My siblings and I have worked hard to coordinate the process. The last time we had to work on something together was my father’s funeral – 25 years ago. The process has been exhausting – for everyone. Completing applications, copying and scanning documents, submitting paper work and re-submitting the same paperwork, researching and visiting facilities, filling out more forms, waiting lists, telephone calls, doctor visits and interviews. Amidst communication breakdowns and misunderstandings, text messages, emails, phone calls – we attempt to preserve relationships and find a way to care for my mother.

In an interview, Jane Gross author of Bittersweet Season: Caring for Our Aging Parents –and Ourselves and the blog: The New Old Age, talked about her state of being “between guilt an exhaustion” as she and her brother made decisions about the care of their mom. She emphasized the need for “family repair” as a result of the process. http://www.amazon.com/Bittersweet-Season-Caring-Parents-Ourselves-ebook/dp/B004DEPII8

I am hoping, after my mom is settled in her new “home”, that we can share these 11 words with each other.

Sharing the Future:

With the current technology, we are so used to being able to predict: weather, traffic, up-coming events. We are always looking towards the future. We are under a delusion that predicting means knowing the outcome.

Almost a year ago to the day, I was starting a public art work: creating a legacy – occupying a permanent space. http://thestonepath.wordpress.com/2013/06/11/next-steps-on-the-stone-path/

Once the piece was installed, I realized how in between my mom and I were in our lives:

The Space Between *:

Between the end of a project and the path to a new artwork.

Between my home in Maryland and remaining in Maine.

Between caring for myself and caring for another.

 

Between living independently and being dependent on others.

Between the familiar and the unknown.

Between continuing or stopping.

 

Between present and absent

Between then and now

Between breath and no breath

 

We are no longer in the space between. We are now moving forward.

* http://thestonepath.wordpress.com/2013/09/03/the-space-between/

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8 comments on “Moving Forward

  1. woodscrone says:

    I was there during the saga of caring for Dexter his last 6-8 years and still needing to work at the same time. We are reminded daily here at CLV of this stage of life.

  2. susan a says:

    This is another beautiful, and calming, essay. Thanks, Jo.
    I draw comfort knowing that countless have successfully preceeded me on this path of caring for loved ones and negotiating family dynamics. When I widen perspective from the personal to the whole, much of the tension and anxiety dissolve, and I’m better able to enjoy each moment of the journey.

  3. Beckie says:

    It is really amazing how the community of Peak’s Island shares so much – you are fortunate to have that experience. I am holding you when you make this big transition with your Mom. I enjoy your writing as always.

  4. Kathy O'Dell says:

    What an exquisite and moving post, Jo. I hadn’t had a moment to read it until today, and in a way, I’m glad, because it’s a great New Year’s Day gift! I will be holding you, your mom, and siblings in the light during the upcoming transition. I hope your post is read by many who have, are, or will be experiencing such change. Much love to you, my friend, and bravo on another fine and inspired piece of writing. Congratulations, also, on your 2015 show!

  5. Margaret says:

    Jo, yes, an amazing New Year’s message: SHARING. Thanks for sharing your personal insights/feelings – you give depth and importance to what others are experiencing.

  6. Jean Martens says:

    Thank you for your heartfelt post and insights born of your experience. I’m next door to Jim and Emily in the side apt if you ever want to stop by for a cup of tea…

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