What Does Quality of Life Mean To You – The Conversation We Don’t Have

Greetings!

I realize some time has passed since I last posted. A lot has being going on! Here’s a quick recap:

In August 2015 I completed the Certificate in Gerontology program at the University of Washington. In January this year I was trained through the Alzheimer’s Association to be a dementia support group facilitator. I will soon be leading a men’s-only dementia caregiver support group. Also in January, I completed a 3.5 day Elder Care/Adult Family mediation training in beautiful Sausalito,California.

Sponchia / Pixabay

A seminal topic that has emerged and resonated with me concerns the end-of-life journey and what that means to all of us as we age. Specifically, I began to recognize the importance of dialogue around what quality of life means to each of us as human beings; and the meaning and value of palliative and hospice care.

These topics take on significant importance when you realize that one in eight Americans aged 65 and over has Alzheimer’s disease. In short, 10 million baby boomers will get Alzheimer’s (“Generation Alzheimer’s: the defining disease of the baby boomers”, Alzheimer’s Association 2011). That means more and more individuals 65 and older are finding themselves either facing into chronic and terminal illnesses such as Alzheimer’s and related dementias, or their spouses or partners are facing these challenging health issues.

Individuals and families are facing into important questions, such as:

  • What is truly important to us in our lives?
  • What, intrinsically, are our true life values?
  • What does “quality of life?” mean to us?
  • When faced with a chronic or terminal illness, in what way might the answers to these questions impact our decisions – either for ourselves or our loved ones –  around medical treatment and intervention?

What I want to talk about in this article is the importance of families having meaningful conversations with each other around their life values, the meaning to them of quality of life, and how the answers to the above questions impact choices around treatment intervention when a serious or life threatening illness happens. In a follow up article, I will discuss the meaning and benefits associated with palliative and hospice care.

I have written much about my journey of care for my wife Nancy, from her diagnosis of early-onset dementia in January 2008, to her death in July 2012. In the spring of that year, she was rushed to the ER twice. With her second hospitalization in June 2012, the deterioration of her health scared me, leading to my engaging hospice care for her. EvergreenHealth Hospice Services provided Nancy incredible, sensitive and wonderful care right up to her death.

Throughout our marriage, Nancy and I engaged legal professionals to draft – and periodically update – wills, durable powers of attorney, and physician’s directive documents. In the wake of her passing, I have reflected on how little time – if any –  we spent actually talking candidly and transparently with each other about what quality of life meant to us, and what our wishes would when we approached our inevitable end-of-life journey. When Nancy was diagnosed with cognitive impairment, the window for that conversation had closed. In large measure, this was due to my being consumed with trying to figure out what was going on with Nancy’s evolving condition, and hurrying to “catch up to her disease”. In reality, it was a discussion we should have had prior to when the challenges of a crisis – her dementia diagnosis – descended upon us.

I am surmising – and I can only speak from my perspective and with the benefit of several years of reflection – that fear was involved in Nancy and I dancing around this conversation. Nancy’s mother passed away from dementia. My dad died in large measure from the affects of Alzheimer’s. So for Nancy and I, this discussion would have necessitated our coming to grips with the possibility we might face an illness where memory loss and cognitive impairment might result in our not recognizing each other. Where Nancy might not know her children. That if we experienced dementia, the end result would be certain death.

In his excellent book, “The Conversation: A Revolutionary Plan For End-of-Life Care” (Bloomsbury 2015), Angelo E. Volandes, M.D., notes that one aspect of the incredible progress in medical technology, ” . . . is the assault of medical interventions at the very end of life.” (p, 6) He goes on to state that a step towards a remedy for this is ” . . . a return to the oldest tool in medicine’s proverbial black bag: talking with patients about their wishes for how they want to live their remaining time.” (p. 6) With respect to the level of treatment one chooses to undertake, Volandes states:  “The success of this essential conversation about end-of-life care lies not in the individual path chosen, but rather in an active and fully informed participation of the patient and family members.” (p. 7)

A seminal work on the end-of-life Journey is “Being Mortal: Medicine and What Matters in the End”, by Atul Gawande (Metropolitan Books; Henry Holt and Company, LLC 2014) In his introduction, Dr. Gawande states: “This is a book about the modern experience of mortality – about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong.” (p. 9) He goes on to say; “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.” (p. 9)

On our journey through life, we are presented with many and varied stages that frame our life experience: We grow up, move through puberty into adolescence, become adults, get jobs, have relationships with friends or significant others, and so forth. Inevitably we face into the complex emotions and feelings associated with transitioning out of a life phase – be that the end of a relationship, loss of a job, a divorce, or the death of a loved one.

The question that emerges with each such life phase is: how proactive, conscious and engaged are we as full, complete and authentic participants?

Through my experience with caring for Nancy, and as the result of my studies around end-of-life matters, I have become acutely aware that it is not enough for me to have the best and most thorough estate planning documents, as important as that is. The “legal piece” needs to be augmented with the following; Does my family understand what quality of life means to me? Do they know what is important and precious to me? Are they aware of  my innermost and most significant values? Do they truly and really know what I want, need and desire during my the end-of-life journey?

So let’s get practical for a moment: You are ill and, as the result of cognitive impairment, are unable to make health care decisions for yourself. Your family is suddenly presented with a nuanced health care circumstance where it is not completely clear whether medical intervention is or is not appropriate. You can have the most complex and thorough health care directive and durable power of attorney for health care imaginable. Yet, if you have not discussed with your family, and especially your surrogate decision maker, what quality of life means to you, what you value, what is truly important to you – then decisions around medical intervention will be needlessly difficult and complicated. The family may literally become frozen in fear and indecision.

Here is a real life example that brought home to me the value of having “The Conversation”:

I was standing in the ER cubicle with Nancy during her June 2012 hospitalization. The attending physician explained to me that Nancy’s precipitous drop in blood pressure had been stabilized – for the moment. If, however, her blood pressure were to “crash” during the night, the doctor needed to know what level of intervention I was willing – or able –  to authorize to correct that event. She went on to explain to me what seemed like a complex procedure that would need to occur, which involved a catheter being run up to and into her heart. I remember like it was yesterday the fear and anxiety that flooded through me at that moment. Yes, I had very comprehensive estate planning documents. And there existed an up to date “POLST” – Physician’s Order for Life Sustaining Treatment – which is a medical order. Yet none of that prepared me for the decision I was facing. I vaguely remember saying “yes” to the described procedure. The full seriousness of Nancy’s condition became very clear to me in this moment. I proceeded to call her three children – my stepchildren – and suggested they might want to come to the hospital ASAP. And, as I noted above, I enlisted hospice care.

What this experience told me, was how different it might have been had Nancy and I had an extensive conversation – before her dementia diagnosis –  around what quality of life meant to us. And once we were clear around this, it might have been incredibly valuable for us to have had a family meeting with her children to talk further about this.

What is important to note, is that these conversations are meant to be regular and ongoing. Our lives move forward. Circumstances change. Our thinking and feelings around what is important to us – our intrinsic values and what we hold dear –  change and evolve as we grow older.

As I share all this with you, I fully acknowledge that I am in my relative infancy in terms of translating into action my insights and understanding around end-of-life conversations.

So know this: It is never too late to wake up. Progress, not perfection, should be our goal.

 

 

 

 

 

 

Person-Centered Dementia Care: The Wave of the Present

geralt / Pixabay

I have written extensively about a topic that can easily be summed up with what is emerging as a rally cry of those with Alzheimer’s disease and related dementias: “I’m Still Here!”

Without further ado, let me introduce you to this marvelous and inspirational short video entitled: “Person Centered Matters”. It focuses on the importance for family members and caregivers to fully engage their loved ones with dementia as real, honest-to-goodness people who are alive, can be engaged, happy, and can experience their lives in a full, authentic, and present manner.

Watch it! Nothing more needs to be said.

 

My Transition: A Lesson in Patience and Humility

My blog, “Catching Up to the Disease: Transitions in Dementia Caregiving”, emerged in January 2013 from my passion and commitment to provide information, guidance and wisdom to caregivers of those with Alzheimer’s and related dementias. The ideas for my articles have emanated from my own personal experience in caring for my wife Nancy, as well as from extensive research and reading, attending numerous workshops, training in caregiver support, and consulting with caregiver professionals. I have also tapped into my background as a professional mediator, which has allowed me to listen empathically to the stories of others, and to be present to their needs.

I knew that the next stage in this journey was to create a consulting business that would allow me to continue providing guidance to caregivers, and be paid for those services. So, in February 2014 I announced the formation of Desonier Caregiver Coaching Services.

I realized this past spring the time had come to develop a fully functional web site that was not just a blog, but which spoke to my consulting business, was highly interactive, and which provided a range of information and resources. After soliciting several bids, I met with a graphic designer who I felt could design a website that authentically conveyed my passion and commitment in this field, and which was accessible to and supportive of caregivers.

And – here’s the rub. To be quite honest, through all of this I was feeling very discombobulated and scattered. My vision for my coaching practice had lost its focus. To be transparent, I was experiencing a great lack of clarity around the definition and direction my coaching business was going. It was disconcerting, to say the least! I felt lost. My passion was still there. It just seemed a bit aimless.

It was right at this time that I met with a mental health professional who works as a caregiver consultant, to pick her brain on how best to promote my coaching business. She listened patiently to my own caregiving story and my commitment for this work. When I finished, she looked me in the eye and explained to me that, to gain additional and much needed credibility with professionals in the geriatric arena, as well as with caregivers, it would be wise for me to achieve additional training and education in geriatrics, aging, and elder care. She told me my personal caregiving experience, research, and mediation skills certainly had great value. It just wasn’t enough. Among other ideas, she suggested exploring obtaining a Certificate in Gerontology.

jarmoluk / Pixabay

This idea fully resonated with me, and seemed the perfect way to enhance my skills and provide me much needed additional training and education. Further, I realized I had been wearing blinders around the potential range of services, assistance and support that might actually exist in the elder care and caregiving field. Obtaining a gerontology certificate could provide me a great opportunity to broaden my horizons.

I had lunch with my sister shortly thereafter, and excitedly shared with her this new revelation. As a former Long Term Care Ombudsman, she has a tremendous amount of information in this field. She listened to me, and then reminded me that she has periodically explored with me whether there might be value in my obtaining additional training and education to augment my personal caregiving experiences and other skill sets. Well, I realized right then that I had been so certain of my own knowledge, experience and skills, and my so-called “readiness”, that I simply had not truly heard this advice. Well, I was hearing it now.

I am pleased to inform you I recently applied to and was accepted in the University of Washington’s Certificate in Gerontology program. It’s a year long series of courses, and starts September 24th.

I long ago learned the value of sitting in the “transitional desert” for as long as it takes to achieve consciousness, awareness, and guidance around the direction my life takes. I have now learned the value of patience, and more importantly, humility, as I once again become a student.

Stay tuned!

 

Use of Antipsychotics in Dementia Care: A Topic Revisited

Back in February 2013 I posted this article in which I discussed the importance of approaching with extreme caution the use of off-label psychotropics to address dementia symptoms. I described how the antipsychotic drugs my wife Nancy had been prescribed on her release from geropsych hospitalization – Risperdal and Seroquel –  were meant to reduce her then agitation, anxiety, aggression and depression. I further set out my journey with both Nancy’s neurologist and her primary care physician in getting Nancy off these drugs when they clearly no longer served her in any way.

First and foremost: The use of antipsychotic drugs for Alzheimer’s disease and related dementias is not treatment oriented. They are used to moderate behavior – period.

The whole topic around the potential for abuse in prescribing antipyschotics in nursing homes and memory care residences was recently brought into sharp focus in a Special Report contained in the just published July/August 2014 edition of “AARP Bulletin” entitled: “Prescription for Abuse: Antipsychotics in Nursing Homes”. Jan Goodman, the author, describes the tragic story of 79 year old Patricia Thomas, who went into a nursing home with a broken pelvis. Ms. Thomas – whose only prescriptions at the time were for blood pressure and cholesterol, and an inhaler for pulmonary disease – was prescribed many medications, including antipsychotic drugs, such that ” . . . she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.”

Patricia Thomas was hospitalized for 18 days. Within weeks of her discharge, she passed away. From the ensuing litigation against the nursing home, a settlement was reached.

Seroquel and Risperdal are intended to treat severe mental illness such as schizophrenia or bipolar disorder. Their use in addressing dementia symptoms are therefore “off-label”. Thus, the FDA requires so-called “black box warnings” for these drugs stating that older patients with dementia related psychosis treated with antipsychotic drugs are at an increased risk of death. Before these drugs are prescribed and administered, It is extremely important that the patient provide full and complete informed consent on the use of off-label psychotics as part of their care regimen. If that is no longer possible, then those authorized to provide such consent – such as family members with comprehensive Health Care Durable Powers of Attorney, or the patient’s guardian – need to consider carefully whether the use of such drugs is advisable.

The AARP Bulletin article is detailed in its warning that the misuse of antipsychotic drugs in nursing homes is a national problem. Ms. Goodman says many experts point to inadequate care staff training and understaffing as the roots of this problem. Cheryl Phillips, M.D, a geriatric specialist, is cited as emphasizing that nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

As a professional mediator, I am well familiar with empowering my clients to dig underneath the issues they seem to have, so as to get to what is really going on. Similarly, a key aspect of dementia caregiving is using an approach that focuses on the actual underlying problem the patient may be facing, which may not be readily apparent and may evidence itself in anxiety or increased aggression. Through patience, sensitivity, and a curious mind, it is possible to unearth the real interests and needs of the patient that are not being met, and then to address them directly –  without the potentially harmful, dumbing-down impact of psychotropic medication.

The Beatitudes facility in Phoenix, Arizona, is lauded in the AARP Bulletin piece for its way of handling patients with dementia. Their approach is centered on Tom Kitwood’s book “Dementia Care Reconsidered: The Person Comes First”. Tena Alonzo, the director of education and research at Beatitudes, is quoted: “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life – they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes.”

I have not been shy in emphasizing the importance of engagement, enrichment and empowerment when caring for those with Alzheimer’s disease and related dementias. In the article “Terms of Engagement: The Experiential Model of Dementia Care”, I introduce Dr. G. Allen Power, a geriatrics specialist. Dr. Power espouses a profound shift from the so-called “biomedical/pharmacological model” of care, to the “experiential model”, where drug use is rare, and individuals with dementia exist in a world populated by “care partners”.

I am thus a firm advocate of the use of antipsychotic drugs only in situations where there is an immediate need to address extreme agitation and anxiety, and/or to deal with imminent safety issues to the patient, caregivers, residents or others. And even then, use of these drugs should start with the most minimal dosage appropriate to address the immediate situation.

Needless to say, each individual with Alzheimer’s or a related dementia is unique, with his or her own specific medical and prescriptive needs. By adopting a more holistic approach to care – focusing on the needs and interests of the human being we have in front of us, and treating the person – we can provide true, compassionate and loving care. 

 

 

 

 

 

 

Survivors’ Transition: The Journey to Self, Renewal and Rediscovery

Jennifer Hopper knows the meaning and experience of surviving an immense loss. She is well recognized in the Pacific Northwest – and perhaps beyond these borders – as the woman who in 2009 survived a horrific assault and rape that took the life of her then fiancée, Teresa Butz.

Jennifer has been quite intentional and conscious in stepping into her journey of grief and healing over the last several years. Her story has been well chronicled. In June 2011 The Stranger published this Pulitzer Prize-winning article. Jennifer followed that with this very transparent piece for The Stranger. Finally, she was featured in an honest and revealing article by Nicole Brodeur in the 4/13/14 issue of the Seattle Times.

A new dawn
kern.justin / Foter /

Through her Stranger article, Jennifer began the long process of shedding the role of being the “constant survivor”. She wanted to share her story, reclaim her identity as the unique individual that she is, and move on. She has started a new relationship. “It is a blessing to have had great love . . . and being able to have the possibility of another without the exclusion of Teresa.” And further, “You can really hold a space for someone. There is room.” Jennifer is a singer. A huge step towards her quest for self-restoration will be performing for the first time publicly on 4/25/14 at the Neptune Theatre in Seattle, part of the Angel Band Project. Proceeds will fund music therapy programs for victims of sexual violence.

In trying to put into words how her assault impacted her life, Jennifer Hopper stated, “It’s as if on July 19, 2009, someone grabbed me by the scruff of my neck, lifted me up, and dropped me headfirst into another life.” Indeed, that pretty much describes my experience when, in January 2008, Nancy and I received from our doctor her diagnosis of early-onset dementia. I have written about the paradigm shift that took place from that moment on for Nancy and myself.

At the other end of the spectrum, I have spoken about the emptiness and loss I felt the morning after Nancy’s death in July 2012. I too then became a survivor seemingly without any sense of who I now was, my identity, and my true purpose beyond the now ended role of caregiver.

There is no timeline for grief. And quite frankly, there is really no such thing as “closure”, when dealing with the loss of a loved one to dementia. “Because a neat and tidy ending is not possible with dementia, you might instead lower your stress level by finding meaning, not closure.” (from “Loving Someone Who Has Dementia”, by Pauline Boss)

The lives of those whose loved ones have passed away from Alzheimer’s or related dementias have been inextricably altered. It is the choices we make in the present – the search for meaning , renewal, and a new purpose – that shape how these experiences impact us moving forward.

As survivors we walk a delicate, meaningful and potentially enriching path. This entails both honoring the life and spirit of our loved one, and creating space in our lives – if we so choose – for new beginnings.

Let me close with Jennifer Hopper’s comment at the end of her article:

“I’ll never be the same person I was on July 18, 2009. Yet I am proud of the woman I’ve become.”

Our Stories: Food for the Soul

I recently attended a book reading at a Seattle landmark – The Elliot Bay Book Company. The book, “Into The Storm: Journeys with Alzheimer’s”, is a compilation of personal stories written by caregivers of those with Alzheimer’s and related dementias. The editor is Collin Tong. Collin had his own personal experience with dementia. His wife Linda was diagnosed at age 57 with early-onset Alzheimer’s. She died in 2011.

In Collin’s introductory remarks at the reading, he said: “Stories help us make sense of the chaos”.

This comment immediately resonated with me. In my work as a family law attorney and mediator, I listen to stories every day from clients who are in the midst of challenging journeys as they move through complicated transitions in their relationships. As a coach for caregivers of those with dementia, I listen to stories from individuals caught in the unplanned and unexpected reality of being a care partner to a loved one with Alzheimer’s and related dementias.

My role, first and foremost, is to be a listener. To be present to the chaos in these people’s lives. To give them a chance to unburden themselves in a safe, confidential, and supportive environment. Only when I provide individuals the opportunity – and perhaps “permission” – to tell me their stories, can the real work begin of giving them authentic and meaningful guidance and assistance.

When I joined my first dementia support group in November, 2008, I felt palpable relief as, for really the first time, I was able to share my fears, anxieties, uncertainties, and questions. I was somewhat conscious of the fact I was dominating the group. But I didn’t care. I needed to unload. And I was met by a receptive audience of fellow caregivers and the group facilitator, all of whom quietly listened, without judgment. Being able to tell my story was not only freeing. It validated and normalized my caregiving experience. And I felt safe.

In truth, the value of telling stories is not limited to the caregiver. In the website CaringBridge.org, Emily Sohn has written this wonderful article entitled: “Dementia Caregiver Tip: Have Patients Tell Stories”. Ms. Sohn shares the insights of Joseph Gaugler, Ph.D., around how those with cognitive impairment and memory loss benefit from being able to talk about their lives.

As Dr. John Zeisel, Ph.D. says in his book “I’m Still Here” (see resources): “In order to treat people living with Alzheimer’s as people rather than as patients, we first have to appreciate their capabilities as well as their losses. We need to see the person through the fog of the illness . . . ”

How\'s about some sugar, baby!

Telling our stories creates a golden bridge that links us to each other and allows our shared humanity to emerge. In this lies the opportunity for transition and renewal.

 

 

 

 

 

 

 

 

Michael Bloom: Coach For Caregivers

Dream Pool

With this post let me introduce to you Michael Bloom, a Certified Professional Coach and Caregiving Without Regret™ Expert.  Michael’s practice is devoted to assisting and guiding professional and family caregivers of those with illnesses such as Alzheimer’s disease and related dementias. I recently engaged Michael as my own coach to support and inspire me as I embark on my caregiver coaching and consulting practice.

Michael has generously posted here on his website one of my articles – “Growth and Life Emerging: The Gifts of New Beginnings”.  Please not only read the article, but browse Michael’s site to see all the wonderful supportive, empowering and truly life saving services he provides to caregivers.

Thanks, Michael, for all that you do!

 

 

Powerful Tools For Caregivers

“Powerful Tools For Caregivers” will be given again this spring, beginning Thursday, May 1, 2014 from 9:30 am to 12 noon at the Greenwood Senior Center. It will run six consecutive Thursdays, concluding June 5, 2014.

~ The Sunny Side ~

Powerful Tools for Caregivers is a comprehensive workshop providing caregivers with an array of strategies, skills, tools and resources to support them on their difficult journey of caring for loved ones with chronic diseases such as Alzheimer’s and related dementias. I participated in this course a couple of years ago, at the height of my caring for my wife Nancy. It was absolutely invaluable in helping me turn inward to my own needs for self-care, which enhanced my ability to care for Nancy completely and authentically. I had the privilege of teaching this workshop for the first time in the fall of 2013. 

Here is registration information:

Powerful Tools For Caregivers

Thursdays, May 1 to June 5, 2014: 9:30am-12pm

Greenwood Senior Center, 525 N 85th St, Seattle, WA 98103

Registration required at 206.297.0875

There is no charge for this course. The Caregiver Helpbook will be available for purchase.  Class limit of 13 participants. Led by Carin Mack, MSW & Marie Adan.

 

 

Desonier Caregiver Coaching Services

Noted writer and teacher Parker Palmer is a seeker. He has frequently pondered the proverbial age-old question: “What am I meant to do? Who am I meant to be?” In his reflections and soul searching he came across an old Quaker saying, “Let your life speak”. This became the kernel for Mr. Palmer’s illuminating book: “Let your Life Speak: Listening for the Voice of Vocation”. He speaks to the complexity of his own experience: “Before you tell your life what you intend to do with it, listen for what it intends to do with you . . . ”

The Union of the Sun and Moon, Song of the Vajra, tantra shows which experience a person undergoes in the intermediate state, the bardo, after passing away, to stabilize awareness during the bardo of dying, Mexican Tile, Guadalajara, Mexico

I have written extensively about my caregiving experiences in being my wife Nancy’s care partner. I knew several months before her death I was meant to do something different with my life – something that provides meaning, fulfillment, a sense of purpose, and service. I have been very intentional about staying in the “wilderness of transition” following Nancy’s passing. I have focused on staying open to insights, consciousness and awareness of what might lie ahead for me.

My first step was developing this blogging website, now in its second year of existence. In the fall of 2013 I attended an intensive, three-day coaching workshop provided by a well known coach training organization. I have provided workshops on dementia caregiving. And, over the last several months, I have been honored and heartened to be approached by many individuals struggling with dementia caregiver issues and wanting insights and guidance as they move forward on this difficult path.

Well, the time has come for me to step up and take ownership of what I believe is the next stage in my life’s journey: providing coaching and consulting services to caregivers of those with Alzheimer’s disease and related dementias.

Here is a brief summary of Desonier Caregiver Coaching Services – including protocols and costs:

Three-month Commitment

The monthly rate for this service is $200. An option is to pre-pay for three months at a discounted rate of $500.

This coaching package includes:

  1. Two phone calls per month of up to 50 minutes each.
  2. In lieu of phone calls, Skype sessions can be arranged of up to 50 minutes.
  3. Unlimited email correspondence during the scheduled length of services.

Short-term Commitment

A one time payment of $200.

This coaching package entails:

  1. Two phone calls of up to 50 minutes each.
  2. In lieu of a phone call, Skype sessions can be arranged of up to 50 minutes.
  3. Two emails between the two coaching sessions, with any additional questions for support or assistance.

 If you would like any other information related to coaching services, please feel free to call me at 206-779-1634, or email me at dontransitions2@gmail.com. There is no charge of course for phone or email inquiries.

Chapter II of Parker Palmer’s book is entitled: “Now I Become Myself”. I’m getting there.

May your journey bring you – and your loved one – fulfillment, peace, and respite. 

Don Desonier

The Ambiguity of Groundlessness

“As human beings, we share a tendency to scramble for certainty whenever we realize that everything around us is in flux. In difficult times the stress of trying to find solid ground – something predictable and safe to stand on – seems to intensify . . . Everything keeps changing, whether we are aware of it or not.”

This passage is from Pema Chödrön’s wonderful book, “Living Beautifully with Uncertainty and Change”. It is in fact from the first paragraph of the opening chapter – “The Fundamental Ambiguity of Being Human.” Ms. Chödrön, an American Buddhist nun, is speaking to a fundamental reality, which is that our lives are in a constant state of change and unpredictability. Just when we think we have it all together, we don’t. We would like to live – at least most of the time! – in a state of calm, lasting happiness, stability and security. The problem, says Ms. Chödrön, is that this mindset is ” . . . at odds with the fact that we’re part of a dynamic system in which everything and everyone is in process.”

So what has this got to do with being a caregiver of someone with Alzheimer’s or related dementia? In a word: everything.

For 25 years you have been a spouse to your loving husband. Ever since you’ve known him, you both couldn’t have been happier taking walks, watching your favorite TV police procedurals, visiting the zoo, or traveling to exotic locales. Creating a wonderful dinner together was pure joy. You and he were a team.

When he was diagnosed with cognitive impairment, everything shifted. You are still his wife. And, you are now a caregiver.

Since his diagnosis, you have done your best to attend to his needs, to engage him, to enrich his life, to keep things as normal as possible. So one night you are in the kitchen and you ask him to make a salad. He stares blankly at the pile of lettuce and veggies in front of him, turns to you and asks, “How do I do that?”. You are in a new moment  of now. The previous reality – a meal making partnership – has ended forever.

A few weeks later, you find that he simply can’t track the TV shows that used to give him such pleasure. One day he is watching the Hallmark Channel and laughing hysterically at a rerun of “I Love Lucy”. Who knew?! You quickly go on-line and buy multiple boxed-set seasons of “Lucy”, and it is a gold mine. At least it is now. Who knows when that will change?

Yesterday, he could not get enough walks. Today, he refuses to get out of bed.

The last time you took a trip, he wandered off multiple times and you nearly lost him at the airport. Travel? Not going to happen anymore.

In short, your life as a caregiver is forever defined by the ambiguity of impermanence and groundlessness. It can be immensely unsettling.

Equinox

Ms. Chödrön asks the critical question: “How can we make friends with unpredictability and uncertainty – and embrace them as vehicles to transform our lives?” My twist to this question is: “How do we let go of our need – our wish – for continuity as caregivers, and reframe this experience as an opportunity for enrichment and renewal?”

For starters, it is helpful to accept the ambiguity that comes with loving someone with dementia. You and your care receiver are in a constant state of transition. In caring for my wife Nancy, embracing the “new normals” required me to make a conscious effort to let go of the “what was”, and focus on the “what is”. With great intention, I tried to stay in the present moment. Once I did that, life became different. As my focus shifted to the Nancy of today, my relationship with her actually grew.

Secondly, let me borrow a little – with a twist –  from William Bridges, author of Transitions. Mr. Bridges speaks of the change that occurs in our lives upon the happening of a significant event, such as losing a job, moving to a new home, or the illness or death of a loved one. What follows these impactful events is the wilderness period, which is the “no man’s land” between the old and the new. When caring for someone with dementia, your life is full of constant, sometimes daily, events that evoke continuous change and a seemingly endless journey in the desert of groundlessness and impermanence. You can’t change reality, so you might as well embrace it and face into it, however uncomfortable and uneasy this may feel! 

Finally, look for the positives in the change that has occurred. I learned how to look outside of myself and strive to enrich Nancy’s life. This, in turn, gave me a new sense of purpose in my own life, and a new and different relationship with Nancy. At the same time, I focused on self-nurturing, and surrounded myself with support from friends and family.

Pema again: “Looking deeper, we could say that the real cause of suffering is not being able to tolerate uncertainty – and thinking that it is perfectly sane, perfectly normal, to deny the fundamental groundlessness of being human.”

A monk introduced Ms. Chödrön to the practice of saying to herself upon awakening: “I wonder what will happen today.”

Are you ready to be curious?