Brokeness… Chapter 6 – – facing the feared

My only negative experience with dementia or other cognitive dysfunction is 2nd-hand, through my mother, who had a gnawing fear of falling into senility, like her mother.  Mom’s memories of the years when Gran’s mental instability fell totally apart never left her.

Praise be, Mom experienced only the minor cognitive challenges that come with being closer to 100 than to 80 – a bit of occasional forgetfulness, the rare moment when she’d get a distant look in her eye & lean her head in a particular way & we’d know that she had lost the thread of conversation, our clue to repeat or reinforce what was just said.

John’s mother was a total wow, apparently as sharp at 87 as she probably was at 17.

I think of Mom’s compadres & older friends, my elder mentors & role models, and realize that they were apparently all in the same camp as my mother, with several of them even sharper than ever in their “sunset” years.

The two of us are forever blessed to have been graced with the privilege & fun of working with Anne Davis Hyatt – who’d been diagnosed with dementia a while before we started our glorious 7-year run of partnering up for good times – and with our beloved Richard, diagnosed soon after we met.  Both much-missed friends had their challenges remembering, but each focused on the joy each moment held.  We learned more about full-throttle living from each of them than we did the trials tribulations tragedy of dementia.  Neither friendship gave us any experience in what to expect from & how to respond to someone with serious to catastrophic cognitive impairment, just treasured lessons in how to look past lack to awe & wonder.

Which leaves me unable to give much in the way of insights to Chapter Six of Jewish Wisdom for Growing Older Making Sense of Dementia’s Brokeness.  Will share what I can & welcome others to share their own experiences & insights.

You know the drill – Rabbi Friedman’s words are in italics, mine are in regular type.

Dementia will touch us – – if we are lucky enough to be spared personally, we are still likely to encounter it in our parents, partners, or friends – – and our fear of it colors our perspective on our own aging.– – In my experience, the great joy killer of dementia is the fear people have of it.  Thanks to working with Anne Hyatt, I know that dementia need not lessen or shrink or diminish the human spirit.  When she had waded into her dementia, already struggling to remember the day & date from moment to moment, John & I would take her every Wednesay night up the River Road to a country inn above New Hope for dinner & to hear the jazz stylings of the great Barbara Trent.  We’d sit where Anne, herself a trained jazz pianist, could watch Barbara at the keyboard.  We could never decide who enjoyed those Wednesday evenings more – Anne or Barbara, who reveled in our friend’s joy in her music.  There was a group of regulars at the bar who took particular delight in Anne, which was explained by one of them, a woman in her mid-60s – – “I used to fear growing older, but now that I’ve gotten to know Anne, that fear has flown.”   An interesting twist on Rabbi Friedman’s comment – those lucky enough to know Anne found themselves released from fear of a dismal, heartbreaking old age.

 

Educator, scholar, and artist Anne Basting … argues persuasively that we need to transcend our fears of dementia.  We need to be empowered to open our hearts and minds to a reality more complex than that suggested by the “fear machine.” – –  I am blessed to know Anne Bastings.  I was sitting next to her at a major conference on aging expansively when it was announced – to the roar of the room – that she’d been named a MacArthur Fellow just a day or so before.  Anne’s Timeslips work is about helping people with memory challenges connect to moments rather than specific memories.  OUR challenge is to let the person be as fully within their moments rather than constantly doing all we can to get them to share memories to which WE can connect.

 

Rose was a Eastern European woman with quite advanced dementia.  She could no longer speak but she could sing, and sing she did, all day and all night.  She had an amazing ability to take up any melody you started in any genre. …  She didn’t sing the words, only ‘la, la’ with great gusto.  Teenage volunteers in the nursing home adored being with Rose.  They lovingly called her “the la la lady” and competed to sit next to her in the synagogue. – –  Anne to a T!  I can’t remember how many times people – especially men – at her very nice continuous care residence marveled to me how much they appreciated just being in her presence, that she always had a smile & never said an unpleasant word about anyone else.  I chalk it up to Anne caring her music within herself.

 

I once heard another caregiver explain to a fellow elevator rider, “There’s nothing I can do for him, and I am doing it.” – – This speaks volumes to the challenges faced by family care providers – our natural inclination is to feel like we should be doing SOMETHING tangible to help a loved one dealing with dependency, perhaps layered with fragility & maybe dementia, perhaps with Alzheimer’s or some other serious-catastrophic condition.  When they can’t do something clear cut with tangible outcomes, people can stay away when what they need to be doing is just be present.  “There’s nothing I can do for him, and I am doing it” – there’s great wisdom love tenderness in that insight.

 

We might think about the family caregiver’s spiritual challenge in terms of the oft-stated biblical command to love the stranger.  We must treat the stranger with care, “for you know the soul of the stranger.”  (Exodus 23:9)  …  Can you let go of the expectation that the person will behave or appear as she used to, and appreciate her for who she is now?  In loving the stranger, can we learn from his person & her journey? – – I’ve never worked with or even known someone who was so deep into dementia they did not have a sense of their surroundings, of those around them, of themselves.  I love the King James phrasing of Hebrews 13:2 – “Be not forgetful to entertain strangers: for thereby some have entertained angels unawares.”  Yes!  If only we could hold onto this, remember it when most needed, when a loved one looks at us with the eyes of a stranger.

It can be truly heroic to experience impatience, grief, and frustration and still compassionately do what needs to be done.  Perhaps we can begin to make peace with dementia, so that should we experience, this illness, we will bring compassion toward ourselves and those around us. – –  I believe that by experiencing the impatience, grief & frustration that is typical of any caregiving situation, not just with dementia, we are gifted with deeper compassion toward others, toward ourselves, toward all life brings us.  What comes to US, especially from truly heroic efforts to be present in the face of great challenge, is the greatest give a loved one can give his or her beloved – the one receiving the care becomes the one responsible for gifts whose worth are beyond description or imagination.

 

I am convinced that the tzelem (image of God in man) is not defined by cognition or capacity.  Amid all the changes of dementia, the tzelem remains;  it is our very humanity.  If we are always living in God’s image, the perhaps we need to question the assumption that the person with dementia is always suffering of living on a lower plane of existence. – – I believe this is the very thing that friends of mine who provide maintenance support (John & I are strictly social enrichment) experience & why so many of them feel their work has a deep spiritual connection.  “Tzelem is not defined by cognition or capacity” – perhaps the person with dementia has fewer barriers to feeling a oneness with the Divine than those of us rooted in minutes & memories.- – I believe this is the very thing that friends of mine who provide maintenance support (John & I are strictly social enrichment) experience & why so many of them feel their work has a deep spiritual connection.  “Tzelem is not defined by cognition or capacity” – perhaps the person with dementia has fewer barriers to feeling a oneness with the Divine than those of us rooted in minutes & memories.

 

Even when we are mired in the moment, bereft of all perspective on our lives, God sees more, in boundless compassion.  God holds ALL of who we’ve been.  We may forget, but God does not. – – I love this thought.  Will inscribe it on my heart.

 

We can emulate God by remembering for those who cannot remember for themselves.  We can connect them to memory.  – – YES!  This is what John & I do with older friends & clients.  We help connect them to memories.  We cringe, hearing youngers implore loved ones with cognitive problems, “Mom, do you remember…” or “Dad, you know who this is…”  We set up the memory, like teeing up a golf ball, so the friend or client can swing, connect & loft it high into the air. Emulate God – remember for those who cannot.    

 

Our challenge is to address the divine within individuals with dementia.  As Rita Bresnahan writes:  “It is not Mom who must remember who I am.  Rather, it is I who must remember who my mother is.  Who she truly is.  Not merely ‘an Alzheimer’s patient.”  Not merely ‘my mother.’  It is up to me to (continue to be)… keenly aware of her spirit, honoring her soul-essence.  Meeting her with caring and love and respect in that sacred place of wholeness where nothing can diminish.” – – Speaks for itself.  I love love love this passage.

 

Read, re-read, then read #10 again.  That snippet, within its full context, is worth the price of Jewish Wisdom for Growing Older & the time it takes to read the relatively short by full of inspiration & insight book.  To read with others, preferably your children and your parents, your loved ones and your friends.

Gretchen Addi is an beacon of stimulating ways for people of all ages & talents – especially creatives & innovators – across an unimaginably broad spectrum of talents & skills to open up innovative ways of approaching living celebrating contemporary aging.

Today, ANYONE can step up & make mega shifts in, astonishing new ways of living expansively across the age spectrum, from new born to end of life.  Every age should be a celebration, every person can find a way to make the lives of olders elders ancients in their orbit  be as vibrant, expansive & self-expressive as possible. Everyone.

And many youngers & olders who weep & wail because they’re shut out of the job market due to inexperience or ageism can look around, consider what they might be able to contribute to the changing environment around aging ever upward & find a niche waiting for their particular talents, perspectives & experience.

In the eldercare (r)evolution, brilliants & inspireds like Gretchen Addi are leading the way for everyone to make a difference, from something as complex as designing new living arrangements that spark connection & nurture expansive living to giving a smile & a hug or a hullo to the older person down the block.

 

Finding Wholeness… – Chapter 4

The chapter heading ~ Finding Wholeness As Our Bodies Break Down ~ IS the very essence of Mom’s experience inching upward toward triple digits.  At 90, she wrote – “As the years tick by and my fixtures and fittings become unglued and the ‘fur’ is loved off, a stronger sense of being Real has moved forward.”  Am quite sure she would have written out the Maya Angelou quote that kicks off the chapter – “You may not control all the events that happen to you, but you can decide not to be reduced by them.”  – to keep on her night stand.

What a blast she would have had, sitting down with Rabbi Dayle Friedman, sharing her thoughts on Jewish Wisdom for Growing Older, mixing in some of her Swedenborgian wisdom on becoming an “Ancient”!

Rabbi Friedman is in italics, my comments (or Mom’s) in regular font:

While we cannot realistically dream of escaping physical limitations or suffering as we grow older, we can hope for wholeness. … Just as we can grow to appreciate the preciousness of each stage of the rose, we can come – with effort – to greater peace with our aging bodies. – – I’ll let Mom take this... “A favorite saying of mine for many moons is ‘Old age ain’t for sissies.’  Actually, managing to get to 90 relatively sound of heart, mind and body (or  any one or more of those three) indicates some grit.  As I inch closer toward  triple digits, being old has gotten a lot easier.  Somewhere around my late  80s, I began to see the humor and humanity more in things, to take upsets  less personally and put them more easily into perspective.”

 

The spiritual teacher Ram Dass, who suffered a devastating stroke in his sixties, works to great each pain or physical discomfort with tender compassion, saying, “Ah, so, even this.” – –  Handing it again to Mom…  “For whatever reason, growing feeble, infirm and even forgetful is part of the  Lord’s grand scheme.”

 

We can try contemplative practice to help us be with a pain or soreness, opening to what exactly the experience is like instead of bracing ourselves against it. – – Yep, back to Mom… “Moving out of that hanging-on state to one of accepting that the  body is a temporary shelter designed to house our eternal soul could be  compared to moving out of darkness and confusion toward lightness and the  light.”

 

We are more than our bodies. … What may help us is to let go of anger at ourselves, or at aging itself, and honor our bodies for doing as best it can under the circumstances.  This letting go may need to happen again and again as our bodies and abilities continue to change.  – – More Mom…. “Ideally, the concepts of physical being, of time and relationships,  are liberated as we get older and older.”

 

It may help us as well to turn our attention toward others who are suffering, to use our own experience of pain to develop empathy and connection. – – So much of Mom’s life focused on putting her attention toward others.  In the mid-1950s, Mom had a nervous breakdown & was hospitalized for over a month, undergoing every sort of horrific “treatment” that was the norm back then; unlike other people of her day, who would have never talked about it, even with close friends, Mom was open about what brought her to that point, helped countless people by talking about her experiences, letting others know what brought her to breaking – her refusal to seek or let others help with two family medical emergencies that piled on, one after another.  ~ When her youngest son was killed, Mom got through it in part by putting her focus on his best friend, who was with him when it happened, and on his family.  From that tragedy on, if a friend lost a child, Mom was among the first to show up to comfort & just be present.  ~ In her last weeks, Mom’s hospital rooms were centers of good humor, interesting conversation & healing peace for the hospital personnel.  She gave as much comfort to the friends & family who came to see her at INOVA/Alexandria, then at St. Mary’s & finally at home as they gave to her. ~  Mom’s greatest desire was that each connection be reciprocal & she did all she could to make it so.

 

We live in a culture that lionizes activity, productivity, and independence.  … We have accepted the notion that our worth is determined by our level of activity or by what we generate.  – – And we are back to Mom…  “The changes  that come  with old age are scary, especially changes in life roles.  I have  not enjoyed the hands-on role of wife for over 26 years.  At ninety, I cannot  even manage the role I played as a parent.  The resources just are not there.    I cannot provide massive emotional or even minor financial support.   I  cannot wash a floor or do the grocery shopping or even dust my own room. (I   can still shell hard boiled eggs and clean mushrooms!)”

 

In contrast, Jewish tradition teaches that our worth is not conditioned by any external measure.  We humans are ultimately worthy simply because we are beings created in the divine image. – –  Mom… “Growing old, even some of the sadder aspects of it,  is part of the Lord’s grand scheme.  Let go of time-bound prejudices and fears  of growing older.”

 

As Ram Dass observes, limits and fatigue “may … be a message to attend to the moment – to be with it … to taste it … to embrace it, a way of making us take time, finally to see what’s here now.” – –  Mom… “Today. my body constantly clues me in that it is merely temporary.  It is  breaking down.  That is in the order of things, however rotten it is to  experience. … Lots of things I loved to do are just memories.  Instead of gearing up into  depression over what is no longer, I find it simpler to shift perspective.”

 

So, what can we hope for?  We can hope for healing … for the capacity to feel whole even when the body that carries us is broken. – – Who else? Mom, of course…  “Whoever is ME is changing so fast it is hard to keep up at times.  It feels  like more is bubbling up to the surface than ever before – well, since I fell  in love, married and became a mom for the first time.”

 

As our bodies experience the illness and decline that are normal elements of aging, we can strive to expand our field of vision – – remaining awake to the present moment but also seeing beyond the moment and beyond ourselves. – – Letting Mom have the last word…  “Dependency has not turned out to be as bad as I thought it would be.  There is a wonderful passage from the book Still Here that expresses my experience over the past year – “When there is true surrender and service between people, the roles of helper and helped, and the boundaries between those in power and those who are powerless, begin to dissolve.”  That has been my experience with my daughter and son-in-law and with, it seems, most of the other people in my life – the boundaries have begun to dissolve.”

It may seem lazy of me, letting Mom respond instead of me (how astonished she’d be), but it’s pretty amazing that someone who was THERE can share her experiences.  Thank you, Rabbi Friedman, for this special way to reconnect with the amazing Katharine Reynolds Lockhart (aka Mom).

Dominic Campbell & Creative Aging International – creating a new old

How do I break it to John that I’ve fallen head over heels for an Irishman?  Can only hope he’ll understand.  But DOMINIC CAMPBELL has stolen my heart.  Understandable.  How could I not feel swept off my feet by someone who speaks my heart when he says, “As people live for longer societies need to adapt. Creativity is key to adapting. (At Creative Aging International) we celebrate aging through various activities, programmes (definitely Irish) and festivals whose culture gently questions expectations of aging.”

Please note that I found Dominic AFTER planning A Creativity Jam for Age Justice as my way of showing solidarity with the big 05/15/18 Radical Age Movement rally in NYC.  I reached for something that would go beyond a protest – a celebration showcasing the creativity of olders elders ancients, that unites & uplifts, that shows the wow rather than woe of aging.

Together with Bea Kelleher, Dominic founded Creative Aging International, headquartered in Dublin, a group that pricks holes in expectations of aging by producing festivals that celebrate creativity in elders.  As they put it, “Our Festival series … showcases the creativity of older people. Here you can encounter world famous older artists alongside those starting to express their lifetime’s experience. ~ Celebrations bring people and organizations together. Challenging subjects addressed through entertainment become easier to engage with. Our festivals and events offer places for collective encounter.

Collective encounter – am stealing that phrase to help describe the Creativity Jam!

Dominic & Bea seek to bring the giddy fun & entrepreneurial spirit of entertainment to opening up perceptions of growing older in societies around the world.  Their events pair revenue-generating activities with ones that are open to all.  A win-win all around.

It quietly freaked me out, reading on their website the very reasons I opted to go with A Creativity Jam for Age Justice rather than something potentially laden with angst & agita to show solidarity with the 05/15/18 Central Park rally.  Art & performances by creatives who are 65+ teamed with discussion that recognizes the impact of age injustice on our society & ways to counteract it while presenting ways to approach “getting up there in years” with wonder instead of woe.

NextAvenue  has a dandy article on a conference Dominic helped organize last month right here it the USA  – – Creating a New Old San Francisco was a 1-day event devoted to considering ways to bring a fresh approach to aging in the City By The Bay.  The 200+ people who flocked to the Contemporary Jewish Museum for the event took a deep dive into issues around contemporary aging.

The reality is that we are expected to live significantly longer than our parents & grandparents, but precious little attention is being given to that reality by the powers-that-be.  And it’s small wonder – government & organizations tend to look at what is, to spin projections from present-day date, make forecasts of what they believe might be based on what currently is.

The solution lies not in our governments or institutions, but in our creatives, in our innovators, in the people who see potential, who spark innovation, with the vision to look beyond today’s reality to tomorrow’s possibilities, with imaginations that leap frog problems to solutions.  In people like Dominic Campbell.

Praise be for Creative Aging International’s  experience bringing together companies, organizations, individuals to create innovative programs that inspire & nurture new approaches to aging, that gathers together – as happened last month in San Francisco – best practices in contemporary aging & powers up the influence of thought leaders like Dominic.  (Be calm, my beating heart!)

Dominic & Creative Aging International are dedicated to transforming how people view & approach aging.  Not as a dire dilemma nor as an anxiety-laden issue, but with joy & celebration, with a light heart & committed vision that brings together creatives & others, individuals & companies, societies & governments.

As noted on Creative Aging International’s website, “Living longer is changing the way we live, where we live, and how we care for our aging selves and our beloveds. Older populations include the wealthiest and most fragile in society.  Change is crossing sectors from finance to transport, tech to fashion, housing to healthcare. ~ Creative approaches are rewriting the traditions of ageing, providing vision, connecting institutions and communities, nurturing well-being.”  Amen & hallelujah!

What’s not to love?!

Whiffling through my bookcases

One great way to prep for the Positive Aging Conference six weeks from now (!) is to kick off a serious browse through my well-stocked bookshelves & share some of my favorite authors with whoever is out yonder, reading this.  So, here’s what’s coming up – each week, will pick a book, browse through it’s corners-turned-down, yellow-highlighted pages, & share favorite bits & pieces.

Started to do that with the books that helped get me from where I was to this amazing NOW, but ground to a halt after realizing I’m meant to LIVE what they taught, not review it.  Besides, the boodle of books that made a huge difference in opening up my life are not going to have the same oomph for another reader – self development is highly individual, the antithesis of cookie cutter solutions!

The  books by Gene Cohen – Dayle Friedman – Wendy Lustbader – Ram Dass – Atul Gawande & other leading lights in the elder care (r)evolution are anything but cookie cutter, but each IS essential reading for people involved on all sides of the caregiving equation.

Bear with me as I whiffle through my bookcases & share the wondrous wisdom insight clarity of authors who opened my eyes -and- touched my heart.

Nan-Gocky-Gramster – babysitting grandma!

Mom did many things for pleasure that – we now know – are great ways to help stay fit & mentally nimble as we age upward.  Every day, she walked, she exercised, stayed in touch with near & far-flung family through letters visits phone, eat balanced meals & was never without the Inquirer crossword puzzle.  And she delighted in taking care of children, especially her grandkids.  Those seven trips she took to Australia to visit my brother Mike & his family were the highlight of those years.  She was there for both Scott & Karen’s births, helped out with housework & childcare on each of her extended stays.  I can only image those months felt like heaven on earth.

According to an article over on NextAvenue.org, data from a Berlin study on aging shows that olders who cared for children ended up living longer, even when the youngsters weren’t their grands!

Taking care of youngsters has another benefit ~~ the social interaction with kinder & their parents is great for brain health.  And developing caring relationships with olders elders ancients  yields awesome benefits for the youngers, providing greater stability & a stronger sense of having emotional support.

Makes sense that running often youngers keeps them on their toes & getting in the cardio, plus can help reduce stress.  But beware!  Without the right balance, olders who run themselves ragged & fret can find themselves exhausted – stressed – strained.

In caring for her grandchildren, in Ardmore or Berwyn, Coogee or Hurstville, Mom ~~ again ~~ put herself ahead of the elder health care curve!

 

Energy work & two pooches at Pike Place Market

Yeah, yeah, yeah – “there are no accidents.”  Sounds so trite.  But as the valedictorian at my sister’s 1980 NYU graduation said, “The reason it’s trite is because it’s right.”  Take the past few hours.

Five hours ago, I shared an adorable FB post & link – two couples walking with their dogs  through Seattle’s Pike Place Market were literally stopped in their tracks when the pooches made a beeline for one another, dropped to the floor for some serious playtime.  The couples were complete strangers, but it turned out the dogs were siblings, from the same litter, both brought into the country for adoption from overseas.

The joy in the dogs’ interaction, their complete connection with each other, felt delightfully familiar to me.  I commented, “this is so cool – there are people i feel this way about on first meeting, like we are long-separated siblings!”

It’s true – there are people I meet for the first time who make me feel like doing the human equivalent of rolling over with the sheer joy of recognition.  That was the meaning of what I wrote.

This afternoon, I had a luscious lunch with a dear friend.  As we were about to adieu, she asked me to watch her handbag while she adiosed to the ladies room.  Waiting for her, my eye caught – again – a trio sitting several tables away.

All through my meal, had been aware of them, a young man & his wife & someone who seemed older but I really couldn’t tell since the light beside her obscured more than size.  Sitting there by myself, something fully registered that had been flitting about my brain throughout lunch – the man was thoroughly enjoying himself with his two companions.

Being me, I went over to share how much I’d appreciated his pleasure in the two others – his wife & his mother-in-law.  After saying how much I’d enjoyed watching him almost preening with pleasure in their presence, the younger woman asked me if I was in energy work.

Her question stopped me in my tracks.  Am I in energy work?  Not like people who do Reiki, chakra healing or acupuncture, but YES – I am!

It gives me goosebumps realizing that the younger woman’s question came a few hours after seeing the two pooches of Pike Place Market, after I wrote (without realizing it) about my energy source recognizing kindred energy sources.  I’d never thought about it before, but getting the question so close to seeing those two dogs rejoicing in their reunion was world shifting, opened me up to an awareness that was both startlingly new & unexpected ~and~ familiar & fully anchored.

Pondering her question, I turned to look more fully at her mother.  The back lighting no longer blocked her.  I was amazed – her face, her attitude, her style sense all spoke of a high-energy spirit.  It was no surprise to learn she was a masseuse – natch.  Energy work.

Our paths might not cross again.  But I am forever grateful for the look of unfettered happiness on young man’s face, the younger woman’s question & the older one’s powerful presence.  Am storing up their energies, delighted at the chance encounter, empowered by their joy.