This is not the usual Father’s Day reflection. Father’s Day – a day marked in North America and other parts of the world to remember and celebrate the fathers in our lives … biological, foster, adoptive, grandfathers, etc. And at the same time, it is ‘usual’, because it speaks of love … love of a daughter for a father when he was fully present as “Dad,” and love of a daughter for a father who began to fade away from being “Dad.”
It was many decades ago when I learned of Dad’s dementia diagnosis.
It was a journey that our whole family took, but particularly Mom, as she watched the man she deeply loved, fade away. Dad was a brilliant man – highly intelligent; articulate; wonderful conversationalist; art historian; consultant for the National Art Gallery in Canada; entrepreneur; stockbroker; loving and devoted father, husband and grandfather; autodidact and listed in Canada’s “Who’s Who.” Not surprisingly, none of us could understand the dementia diagnosis for him.
The “why” questions emerged. At that time, so long ago, little was known about the disease. And there were no guidelines for caregivers.
Mom devoted herself to Dad and as a result, her health suffered. We almost lost her. A decision had to be made and because Mom emotionally couldn’t do that, I flew across Canada to be with them, signed the paperwork and travelled with them to the care facility. While it was one of the most difficult decisions and days of my life, it must have been far worse for both of them.
I lived over 4,000 miles away. My brother lived over 2,000 miles away. He was seriously ill. We couldn’t be there on a regular basis and take some of the caregiving of Dad off Mom’s shoulders. Mom was on her own. As she no longer drove a car, she took the bus – an hour’s bus ride to the facility in the morning, and an hour’s bus ride home at night in all kinds of weather. From the day I signed the papers and Dad moved into institutional care, Mom was with him – breakfast, lunch, dinner – every day. Not surprisingly, her health suffered. We almost lost her. Physically. Her doctor became so concerned that he told her (and phoned to tell me) that she had to stay away from the facility and couldn’t visit Dad for six months. We almost lost her again. This time, emotionally.
She just couldn’t imagine not being with Dad every day. Her grief was compounded by guilt and exhaustion at all levels.
When her doctor intervened, Mom was understandably angry and upset. But she listened, heard my concern for her and my reassurance that Dad was safe and well cared for, did as she was advised and came to live nearby me. Fiercely independent, she agreed to the move but wanted to maintain her independence. Slowly, her health began to improve. And slowly she began to see and understand the importance of self-care.
When she returned to Dad, she was healthy. And, she was wiser. She knew how to balance her time … time with Dad and time for personal rest and re-creation. After Dad died, Mom formed the first Alzheimer’s Association in Ontario. No surprise to anyone who knew her. Mom (Joy Mack) was a woman of many gifts and talents. She was a courageous woman with a vision who was determined to help people in Canada and their families faced with the diagnosis of dementia/Alzheimer’s and to this day, thanks to her, the Alzheimer’s Association in Ontario is an integral source of information, counselling and support for those dealing with dementia either as caregivers or diagnosed with the illness.
That was long ago. Today, diagnoses of dementia/Alzheimer’s continue to be pronounced. And as I get older, it seems that particular diagnosis is happening more and more frequently. The road ahead is not an easy one for caregivers of dementia patients. The person they knew, is no longer the same person. As the illness is first diagnosed and then progresses, it can take more and more of a beloved spouse, parent, sibling, grandparent, far away from reality (sometimes, slowly; sometimes, quickly). Gratefully, new medication is delaying progression in many instances but still, the changes are evident and there is deep pain at all levels for all concerned.
While dementia patients endure many basic frustrations and losses (memory is only one), caregivers endure frustration and loss when changes in their loved one emerge … the ability to enter into a meaningful conversation becomes short-lived or non-existent … the ability to understand banking or technology or recipes or even how the phone works becomes short-lived or non-existent … the ability to understand it to be a particular day or month or year … the ability to remember a birthday or anniversary or Christmas etc..
As the illness progresses, things can change for the caregiver even more … loss, grief, reality set in as the realization that the above ‘abilities’ are not functioning and no matter what they do, they cannot help their loved one to regain those abilities … stress can bring physical, intellectual, spiritual and emotional responses / reactions – not sleeping well – exhaustion – not able to concentrate – anger – reliance on alcohol / prescription drugs / medication to help ‘get through the day’ – social isolation due to not wanting to leave their loved one alone for too long – frustration at having to repeat answers to the questions over and over and over – patience is no longer part of their personality – a sense of guilt arises about leaving the person alone at home while the caregiver gets their hair done, goes grocery-shopping, takes a course/workshop, etc..
What to do? Self-care. How that self-care is manifest, is different for every caregiver because every situation is different. But the directions of flight attendants in plane emergencies: (“If the oxygen mask drops down, put yours on first and then help the person who needs help”) are a guide: self care, first and foremost. Dementia is a difficult journey for all concerned – the person diagnosed, family members who try to help by bringing up memories of the past and say “Do you remember when we … you … I did such and such? Do you remember … fill in the blanks.”
The reality is, they don’t remember and realizing they don’t remember only serves to cause them distress. So we must not go that route with them. We must “be” with them – where they are … in their time zone, in their physical space, in their understanding of situations and people. Not insist that they are with us in our time zone, physical space, understanding of situations and people.
My hope and prayer is … that family and friends will remember the importance of not asking the “do you remember” questions. May those who are afflicted with dementia know they are loved. May family members and friends not judge the decisions caregivers make for themselves, or for their loved one who has been diagnosed with dementia, for they are doing the very best they can.
And may caregivers remember the importance of self-care and take care of themselves.
First.
Their loved ones would want them to.
A PERSONAL ASIDE: Yes, this might be an unusual Father’s Day reflection, but hopefully it is seen in light of tribute to a man who faced his devastating illness with courage. The man I remember this day and many other days, Albert Edward Mack (Eddie) was a gentle, wise man – a loving and respectful-of-all-people man. The lessons he taught were ‘gift’ as I was growing up, and even more so now that I am older than he was when he died.
This day, I remember Albert Edward (Eddie) Mack with much love and deep gratitude.
Rest in peace, Dad, this Father’s Day and all days. You were a wonderful father, grandfather, husband to Mom and so much more. I honour you. Your memory is such a blessing.
“It’s hopeless. You just have to accept that. Your child will never be a contributing member of society. I can make arrangements for him to be institutionalized. It’s all for the best.”
Those were the words the doctor spoke, telling the young mother that her son was “hopeless.”
Hopeless? There are many situations that many think of as hopeless … a marriage on the verge of collapse … a relationship that was desperate for reconciliation … war … a family that was estranged … a body that had run a good race for decades … corrupt politicians –
When human problems beset us … when our personal lives disintegrate … when the world seems as if it has gone crazy, it seems that we seek answers from every other physician, before we dare to “let go” and “let God” – before we resist putting our prejudices, our loneliness, our anger, our frustrations, our pride, our hatreds, our fears into the transforming hands of G_d, the Holy One, the Creator, the Personification of Love, the Bearer of Hope.
How long will it be before we reach out, like the woman with the hem who touched Jesus’ garment – or before we are like the story of Jairus, the ruler of a synagogue, who was searching desperately for some hope. He’d tried everything and now, one last attempt. When he finally found the man Jesus, he fell on his knees and repeatedly cried … “My little daughter is at the point of death. Come and lay your hand on her so that she may be made well and live.” Without a word, Jesus went with Jairus. And while that’s all that Matthew’s Gospel tells us, the story appears in Mark’s Gospel as well and carries this story further as we learn that a messenger from Jairus’ home comes and says “Your daughter is dead. Why trouble Jesus any further?” To the messenger, the little girl’s death was the end of the story. There was no hope. There was no point in trying to go further. It was hopeless. Fear set in.
Like the day a phone call brought fear to a priest who, the evening of the phone call, wrote about The Not-Knowing-Time:
“An ordinary medical test was done. Anticipating nothing unusual, and yet there was. “Redo the test” said the physician. “Nothing to worry about – but let’s rule out …” So, the test was redone and there it was. Again! “A specialist. I want you to see a specialist” she said. The rest of that day was a blur other than the ugly FEAR.“Get me to the specialist. Now! Let me know what I’m dealing with, so decisions can be made and life can be planned. The fear is not of dying. The fear is of the not-knowing.”
When we are in such fearful and seemingly hopeless situations, is the God-of-All-Knowing the first we consider turning to? Or turn to at all?
Then there’s the story of the woman who touched the hem of Jesus’ garment. The social context of the time was a significant factor. Because she was bleeding, she would have been looked upon as ‘unclean’. And as such, she was a woman, a person with no rights, and would have been shunned, at the very least, for daring to be in the company of the men who surrounded Jesus, and to touch the hem of his garment. Perhaps she prayed/hoped that her fears would be relieved.
What of the priest who wrote about “The Not-Knowing Time”? A week after the phone call, another entry in her journal: “Unraveling the Not-Knowing Time.”
“Sunday night I wanted to stay home, curl up in bed and watch some inane television program, but I couldn’t. I had responsibilities. In that moment, I hoped that no one would show up at church that evening and I could go home. But, there they were … the two of them. I couldn’t go home.
I remembered the phrase: “When two or three are gathered together, there am I, in your midst” and hoped/prayed that something happened for the two who came to church that evening and would happen for me. But, nothing happened for me. I felt no relief – no peace. “The Unknown” still haunted me as walked home.
Home at last. A cup of hot tea brought solace, but no relief from the Fear of the “Not-Knowing Time”. The phone rang the next morning with a message “Your appointment with the specialist is scheduled.” The “Not-Knowing Time” had begun to unravel.”
~~~~~~~~ Many others have desperate situations. Perhaps they are facing a seemingly hopeless financial crunch … a marriage that is on the rocks … a teenager or toddler that you can’t handle … a parent who no longer can communicate with anyone in ways others remember … a spouse who is imprisoned either in body or mind … living in poverty and/or war, addicted with nowhere to turn … grieving over the death of someone loved very much …the thought of losing medical coverage – house – job – freedom … a child/spouse/partner/parent who is ill or dying … dealing with their own medical crisis … and the list goes on.
There are countless stories that remind us that no situation is hopeless. But does this mean that if there is enough faith, every dead person will be raised to life on earth? … that money for every financial need will appear?… that everyone who is terminally ill will be cured? … that a job will be provided for all the unemployed? No. What it means is that we will be met in our fears and uncertainties and comforted in our Not-Knowing-Times.
Like the true story, long ago, of a wealthy woman, an atheist, who lived in Hanover, Germany. She wanted to prove to the world that there could be no resurrection. She gave orders to those who were to take care of her money after she died, to build a tomb of stone around her, so strong that her body could never rise out of it. Since there was nothing illegal about her request, the men built her a great tomb, and around it, they built an iron fence. What the builders didn’t notice was that a tiny seed fell into a crevice between two of the massive stones and one spring some years later, it sprouted. As the seedling grew into a tree, it pushed aside the heavy stones and the unbreakable tomb was cracked open.
If you go to a place in Hanover, Germany called Gartenfriedhof (Garden Cemetary), ask to be shown the Geoffnetes Grab (the grave that was opened). You’ll have no trouble finding the tomb, because out of its great crack grows the finest tree in the garden. ~~~~~~~~~~~~~~~~~~ Her grave was opened. Hope stepped into Jairus’ life … stepped into the life of the woman with the hemorrhage and healed her body … stepped into the life of the child whose doctor pronounced him to be hopeless … stepped into the life of the priest who wrote “Knowing Time … Holy Refuge”:
“Procedures have begun. Nothing untoward showing up so far. Other complications on the horizon. Getting older and having the body not move as it once did is not fun. I must try to “let go and let God.” The talk about the “peace that passes understanding” isn’t just ‘talk.’ It really exists. Should fear well up within me again… should the unknown frighten me … should the “Not-Knowing Time” seem to engulf and entrap and overwhelm and I can’t move beyond it, I hope/I pray I will relax into the gentle, caring, loving hand of Hope – of Love – of the Creator – and allow myself to move into “Knowing-Time” which, from God’s perspective – from Hope’s perspective – from Love’s perspective – from the Creator’s perspective is “Knowing-Time.” Kairos … not Chronos. “Knowing-Time” exists … whether I feel it or not. ~~~~~~~~~~~~
No matter what situation you may be in now – or you may have to face in the future – with God, there are no “Not-Knowing-Times.” There is always hope! Consider these …
—- on a wall in Dachau prison, these words were scratched: I believe in the sun even when it isn’t shining. I believe in stars even when I see them not. I believe in God even when God is silent.”
—- In a tiny room in a refugee camp in Sri Lanka, four women were teaching songs to barefoot, dirty, scantily-lad children. Since there was no room to sit, they all stood for this brief respite from the noisy, hot, humid, dusty and impossibly crowded communal living area. On the door, crudely printed, were these words “Life is a gift from God.”
The refugees in war-torn Sri Lanka, the concentration prisoners in Dachau – they knew Hope – they knew Love – they knew another word for Hope, for Love – they knew the Creator, God, By Whatever Name … even in the midst of a terrifying yesterday, a bleak and often hungry today, and a potentially fearful tomorrow.
In many Christian churches this coming Sunday, people are marking Pentecost Sunday – a reminder that the Holy Spirit offers Hope – Love.
May we never forget that even sturdy tombs crack open! … that Hope/Love/God enters lives (enters the “Unknown Times”) – enters the moments of apparent hopelessness.
I love learning. No, scratch that. I’m passionate about learning! I try to learn something new every day. Some days the learning is huge. Other days it’s subtle. Some days the learning is about me … what I believe, who I am, things I need to work on. Some days the learning is about others … how hurtful, resentful, unloving, unkind, mean-spirited, unforgiving, people can be … how generous, gracious, kind, thoughtful, compassionate, people can be. Some days the learning involves a new approach … to technology or art or gardening or writing or music or a new chess move or craft or history or literature or religion or politics.
And some days, it’s a combination.
Each night before I go to bed, I ask myself “what have you learned today?”
Recently a difficult moment and at the same time grace-filled moment, helped highlight a lesson again.
It was the lesson of forgiveness. Again.
Just when I think I’ve learned this lesson, another situation / person / event reminds me that forgiveness happens over and over and over and over again.
Forgiveness of others … forgiveness of self … forgiveness of God/the Creator.
They’re not easy lessons, but they are important and integral to spiritual growth and self-awareness.
This is a difficult time for many. Terrible things are happening. … The people of Ukraine continue to be at war. … Say the words “Israel, Palestine, Gaza ” and people “take sides.” … People flee their homes in the hope of finding refuge from fire, ICE, earthquakes, tornados and more … Fear, anger, loneliness, suspicion, hatred permeate conversations at home and work and on social media This is a difficult time for many.
The concept of ‘gentleness’ … the quality of being kind … comes to mind. Gentleness has disappeared and is no longer present. Why? … Can gentleness exist when fear overwhelms? … Can gentleness exist when suspicion transcends reason? … Can gentleness exist when anger rages? … Can gentleness exist when hatred fuels communities, families, elections, countries, politicians, so that there is no space for hope to filter in, for fear to be lifted, for hatred to dissipate?
Being gentle does *not* mean ignoring the role we can play by … being a voice for the voiceless … righting wrongs … challenging principalities and powers by our words, thoughts, actions, prayers.
Being gentle *does* mean … speaking in tones and words that don’t threaten … acting in ways that don’t incite … “thinking through” situations and responding rather than reacting. … listening to the voices of those who have walked similar paths before us: Gandhi, Anne Frank, Malala, Martin Luther King Jr., Jesus, Elie Wiesel, the Dalai Lama and many others.
Being gentle *does* mean … not giving power to hurtful words in personal emails, social media posts, phone calls, snail mail letters … focus on addressing wrongs in our own community we’ve overlooked or ignored in the past because it was happening to *the other* and not to us, because we didn’t want to get involved, or we didn’t think it would make a difference.
Hurtful words and actions can push us forward so we give financial support to organizations who are being threatened … offer sanctuary in our homes, our cities, our countries … speak gentle words of strength, courage, steadfastness and hope to those who are deeply wounded by the rhetoric and chaos.
Embodying a life of gentleness could mean much to individuals, families, communities, countries and this world.
May we be gentle with one another. May we be gentle with ourselves. “Be gentle with yourself and others. You are a child of the Universe. So are they. You have a right to be here. They do, too. So let us be gentle with others and ourselves.” <an adaptation of American writer Max Ehrmann who penned the “Desiderata.”>
With Mother’s Day on the horizon, may we be mindful that there are women who will be celebrating and giving thanks while at the same time, there will be women who will be grieving and in pain. All on the same day.
With Mother’s Day on the horizon, I think of and pray forexperiencing a wide range of emotions … the women who never birthed a child … the women who miscarried … the women who were infertile (or their partner was) … the women who had an abortion … the women whose child was stillborn … the women whose child had serious health issues … the women whose child ran away and put into custodial care … the women whose child was raped … the women whose child was taken away at birth by authorities … the women whose child was kidnapped, arrested, deported … the women whose child died due to the pandemic, accident, overdose, illness, murder … the women who began life as male, but knew they were not … the women whose child lives in fear … the women whose child became alienated from them and there is little or no communication … the women whose adoptions fell through … the women whose artificial insemination didn’t work … the women whose surrogate changed her mind & kept the baby … the women whose child is in prison … the women whose child had a debilitating physical/mental disability … the women whose child committed suicide … the women who were surrogate mothers, carried the child to term, but who never became that child’s parent. … the women in countries at war, trying to be strong for their children while separated from their partners, families, country and living with explosions, food shortages and the threat of rape, annihilation. … all whose mothers have died
With Mother’s Day on the horizon,I think of, and pray for those who are rejoicing because … they gave birth to a healthy child … their child had children and they became a grandmother … they adopted a child … each of us – for we all had a biological mother and were given life.
With Mother’s Day on the horizon, I think of and pray for those who are mothers, but may not see their role to be one of mothering: foster moms, spiritual moms, mentor moms.
With Mother’s Day on the horizon, I think of and pray for those who lost their mother through death or alienation or deportation and all who suffered abuse from their mother.
This year, with the reality that Roe v Wade was overturned in the United States, I think and pray for the countless woman who will be forced to carry a child to term … regardless of rape, incest, age, or their own death.
May acknowledgment of Mother’s Day, be done with sensitivity, compassion and kindness in churches families social media and law courts.
~~~~~~~~~~~~~~~~~~~~~~
“Mother’s Day” (a secular celebration) in North America is not the same as “Mothering Sunday” which is a Christian celebration, celebrated on the 4th Sunday in Lent in the UK and Ireland since the 16th century.
Do you remember Yoda from Star Wars? A legendary Jedi Master, Yoda may have been small in size, but he was quite the theologian, philosopher and poet.
Yoda said “Do or do not. There is no try.” In those two short sentences, Yoda extended a call to *do.” *Do* kindness. *Do* acts of justice. *Do* speak up for … the bullied … the disabled … the environment … the mentally ill … the lonely … the impoverished … the victimized … the grieving … the homeless … the abused animals … the frightening slippery slope that has followed the abolition of Roe v Wade … the elderly … the frightened … the planet … the chronically ill … the addict … the growing tension on university campuses … the addicted … the war in Ukraine and the Middle East and Africa … the political situations in the United States, Hungary, Canada … and
We’re going down the Rabbit Hole and further down the Slippery Slope because …
“First they came for the women who decided abortion was the best response to their pregnancy and I did not speak out because I was not pregnant. Then they came for the LGBQT+ and I did not speak out because I was straight. Then they came for those who were not Caucasian and I did not speak out because I was Caucasian. Then they came for me and there was no one left to speak for me.” ((based on Martin Niemöller’s WW11 words: “”First they came for the socialists, and I did not speak out because I was not a socialist. Then they came for the trade unionists, and I did not speak out because I was not a trade unionist. Then they came for the Jews, and I did not speak out because I was not a Jew. Then they came for me—and there was no one left to speak for me.”
Yoda set a challenge and put forth a reminder that … change *can* begin … peace *can* appear … joy *can* be experienced … hope *can* be rekindled … voting *can* bring about change …
Perhaps only in oh-so-small steps, perhaps only in oh-so-small glimpses, but change *can* happen when a Yoda Attitude begins in our heart, in our mind, in our spirit, in our action. The change might not happen in the ways we want … or expect … or in the time frame we need. But change *can* happen. “Do or do not. There is no try.” (Yoda).
On this, the fourth day of the month of May, may we have a Yoda Attitude. And may the Fourth/Force be with us all.
