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.