Loving Journeys: Caring for an Aging Parent
A presentation by author Beth Witrogen McLeod
June, 1999
University of California, Berkeley

Introduction to the Speaker:


Our speaker is Beth McLeod. who's been very involved with the pilot program on this campus. She was even involved with the program before I came and is probably somewhat instrumental in making sure that it's here. I'd also like to say that she is a true advocate in support of elder care throughout the country. Beth is also a product of UC Berkeley; she got her Masters from the School of Journalism here in 1973.


As a journalist she has specialized in aging and caregiving issues, as some of you may know. She's drawn from her personal experiences of the caregiver, for both of her parents were terminally ill at the same time. As a result of that she's also become a very passionate advocate for raising awareness of caregiving issues throughout this country and probably internationally before too long. Another result from her experiences as a caregiver is the 1995 series in the San Francisco Examiner ,which we have copies of here, "The Caregivers," which actually won many awards nationally and regionally and also was nominated for a Pulitzer Prize. So it's a wonderful, wonderful series and I think it's probably instrumental in beginning that awareness about caregiving. She's also had many articles published in daily publications including Family Circle, Good Housekeeping and SELF. She also likes to travel around the country and present at aging-related conferences.


A little bit about her book for those of you who haven't seen it yet, its called Caregiving: The Spiritual Journey of Love, Loss, and Renewal (John Wiley & Sons, 1999)---- and is available here and in bookstores in the Bay Area and online. We also have a book lending library at the Resource Center on Aging. What I hope to do is pass it around, the copy that we have, that way all of you can get a chance to look at it. They say that this book is an outgrowth of the contact she's had, significant contact, with Caregivers around the country, but also from the online Caregiver Support group she does through AARP. So I think it's a very wonderful book and those of us who have been Caregivers share that opinion too. Before I go on and on I will go ahead and stop and introduce Beth McLeod, we're very honored to have her here.


I want to thank you so much, Diane and Shelley. Thank you so much for this opportunity. I especially want to thank all of you for coming out today; it's really wonderful to see you. I'd like to know first of all, How many of you are caregivers? Practicing? How many of you are daughter or daughter-in-law Caregivers? Spousal? Other? Great, this is such a great microcosm; with our one lone male there should be about three to go with the statistics. But it is so representative of Caregiving and aging being women's issue so I thank you all. It's just wonderful to see all of you.
I want to sow two seeds today: one is the awareness of the issues of family Caregiving; and secondly is the possibility for transforming this life passage into something richly rewarding. And I will begin with my personal story, not because it's my personal story but because it represents this whole of the loving journey of caring for an elder loved one.


I was drifting along in my tidy little life when out of nowhere in September of 1991, as I was at the end of my work day at the San Francisco Examiner my father called to tell me about what we thought was arthritis in my mother's hands. She had been a concert pianist and had recently gotten back to the piano to hopefully take care of some memory problems that she was having, which was very unusual because she knew every number in the phone book. And we'd been trying to find out for quite a few months what was wrong with her fingers. She didn't have her three- octave reach and she was having some pain. So I called my father to find out the test results. He paused and said, "Doll, Mommy doesn't have arthritis, she has Lou Gehrig's disease."


I was broadsided out of my life at that point, and it was a life to which I have never returned. I stood up with the phone in my hand. My husband, who works at the Examiner as well -- he was the photographer on the series by the way -- had been chatting with my boss, behind a closed door in her office, joking around. I sat upright and the look on my face I can't imagine. I waved at him hysterically, and there began my new life.


It was a life that for a long time was truly lived at the lowest levels of inferno, and this is why I must speak about it. Because it is representative of how hopeless and untrained and unprepared we are to deal with illness or frailty in this society.


We did get a second opinion out here at UCSF. My parents were in Kansas, I should say. We got a diagnosis confirming Lou Gehrig's disease with a dementia of the Alzheimer's type. So my mother had two simultaneous catastrophic illnesses. And what we didn't know at the time was that my father was also dying from a rare form of chronic sacral Cancer that he had battled for 25 years. It had never been an issue as such. So suddenly here I was in California with two parents dying in Kansas at the same time. I knew absolutely nothing about taking care of them or what any of this meant. They had always been self-sufficient, as is the American way, rugged individualism that bristles at needing help and is especially weary of asking for it. We just don't ask for help in this country.


So over the course of almost two years, I flew home every six to eight weeks and tried the best I could in a state of total helplessness and despair to give my parents some measure of love that they had always given to me and to my older sister. I had to take unpaid leaves of absence since there were no workplace benefits at the time, no support whatsoever, all the while feeling like a pathological mess to handle what I assumed was probably a commonplace occurrence -- but no one ever spoke of it. So, no one absolutely wanted to hear about it from me. I was very isolated. I did the best I could, but I never felt that was good enough. I had college degrees, so I thought, "I should be able to cope with this." And I loved them, so I should have been able to save them. But I couldn't.


There wasn't enough time or money or knowledge or training or family members, as was the case, to allay the very worst of consequences.


My father always said, "We don't want our illnesses to become your lives." But of course they had become that. And in an effort to not burden us, they didn't want to talk about anything. So it became even more difficult to know how to care for them. I didn't know anything about community services and resources that are in abundance. I didn't know anything about care management or financial or legal counseling, or even home care. And after home care bills reached $15,000 a month, after we were able to patch together some networking back in Wichita, I did raise some money to help pay for nursing home care. Both of my parents ended up in a nursing home, where after a few months they died -- five weeks apart.


The whole experience was catastrophic for me; it was very life changing. At the same time, there was a little voice behind me that always said, "Pay attention. This is bigger than you and this is more than just what it appears on the surface." So I spent the next year and a half in what would be called a clinical depression. It was actually part of the grief process and probably the beginnings of perimenopause, as I understand now, too! (Laughter) It helps to be a reporter and research these things and realize that, "Oh! There're always deeper things happening at what seems like a mid-life crisis. But I came to understand this, actually as a mid-life right of passage that is not recognized in Western society, but one that is very real. So, taking one step back and seeing this from a different perspective allowed me to come out of the depression and put together the series and look at a much broader and much more optimistic transformation of perspective for the book.
So, this is what I bring to you today. That in fact, when all is said and done, and the critical care services have been arranged, we still are left with the emotional and psychological and even spiritual components of caregiving - of giving this very heartfelt care and stretching our hearts. We may or may not realize we are caregivers, but the bottom line is that we are people in relationship. And our past patterns, our dreams and our needs and our jealousies, our sibling rivalries all come home to roost on the doorstep of family caregiving. We actually didn't escape our families when we went away to college and started our own families. Here they are again, and now its time to pay attention in a very different way.


My parents' suffering left a very interesting legacy, a double-edged sword as it were, awareness of both the sorrow and the generosity of the human heart. Nowhere perhaps is this paradox more widely played out than on the daily stage of family caregiving, where the unsuspecting find themselves on a chaotic journey in which the only certainty is the demise of their loved one. These caregivers are on a path seemingly without end, subjected to the stresses and guilt of watching another's pain without being able to erase it, of witnessing a loved-one's dying without being able to prevent it. They quietly sacrifice personal agendas to look after those in need, often sandwiched between child care and jobs, and usually without advanced planning. They live in a world apart from everyday reality and wonder if they will ever be normal again. They have one goal: to maintain the dignity and the well being of their loved one until the end. Yet these loyal souls, many of whom do not recognize themselves as caregivers, work largely without professional help, feeling they can and must do everything alone.


There is no question about taking on this role. Caregivers do so, compelled not only by the dictates of society, but by the mandates of the heart. They bathe, feed, dress, shop for, listen to, and transport frail parents, spouses, children, friends, relatives, neighbors, and even strangers. Night and day they torment over how to keep loved ones out of nursing homes, how to give adequate medical attention and make life and death decisions when they have not been trained to do so. Often in poor health or over age 65 themselves, they worry about safeguarding an obstinate relative's finances or moving him or her to a more secure home.


In deeply individual ways, caregivers blaze their own trails and support networks. Most often a woman, each caregiver must deal with challenges like handling complex medical and legal documents, finding appropriate housing or care facilities, modifying a home for safety, moving a loved one across the country, massaging a child forever confined to bed, changing a diaper on a modest and humiliated parent. Loved ones who have been independent now fear becoming burdensome. Family patterns are turned upside-down and futures are forever altered.
Caregiving is as much, if not more, about the emotional impact as the physical. The questions that come up basically are these: "How do we keep our hearts open in hell? And why should we try?"
This is the loving journey of caregiving and this is also the promise of personal renewal.
I hosted an online caregiver support chat, every week for about four-and-a-half years, originally through AARP and then through Third Age Media. And interestingly, I have not found one caregiver that did not feel guilty at some point -- primarily for not being as good a daughter or spouse or in-law as they thought they could be, and not being as intelligent and as giving, always guilty about having other roles or responsibilities, and how to juggle and divide yourself into so many roles, which we women are asked to do. We are wives, we are daughters, we are employees, we are mothers. It's a tremendous task to feel that you are doing a good job, and as good a job as you want to do in all of these roles.


These are common emotions across the spectrum of our society. It is a testament to the unconscious ways that we are conditioned and socialized to be in a culture that is very age and death denying.


It's almost a conspiracy, it seems, that the social order and even the media, with its emphasis on violent news, play a great role in this emotional journey. They convince us that we are less capable than we truly are; that we are less kind and less giving than it is in our nature to be. We buy into this and we feel weak and ashamed. We live in a culture that glamorizes youth and celebrity, as we all know. I even heard on a CBS broadcast one night aging called, "a complex series of disorders." So, how can we feel good about elder care with this kind of subliminal input that we're getting all the time? If you're a woman, the expectations and demands are even more complicated, and if you're a minority caregiver, you're triply complicated because of the lack of culturally competent mainstream services and also often the lack of your own health insurance and good health.
So there are a lot of expectations and assumptions that society lays on caregivers, and there are also a lot of family assumptions. How many times have we all heard our brothers or sisters or aunts or uncles tell us what to do, but they're not available to give the help themselves and they're very quick to criticize? It's a common and unfortunate family dynamic, it is very real, and it's a level of stress that we do need to address. It's also important to understand that we live in a fix-it society, one that wants instant solutions to problems and sound-bite answers -- we want things to be black and white but they're not. These are emotional issues and they're very gray issues. There's not one best answer to any of the problems.


We also live in a society, as I said, that believes in independence at all costs. Yet as author Dr. Bernie Siegal says, "If you think that trying to do it all makes you independent, you're wrong. What this does is exhaust you and make you vulnerable to illness. Being independent doesn't mean you don't need other people in your life. It means knowing your ability to deal with adversity as well as expressing feelings, asking for help when appropriate and sharing your needs."
Caregivers, one social worker told me, are ordinary people in extraordinary circumstances, and I believe this is true. In thirty years the population in the United States alone of people over 65 is expected to double, and Alzheimer's alone, for example, is projected to increase from 4 million to 14 million. The number of people with chronic ailments is expected to leap to about a 134 million, and I imagine it's really larger than that. The most recent survey from the National Alliance for Caregiving found 22.4 million caregivers or one in every four households. And again I suspect that the figure is really larger than that. All of this scientific emphasis on longevity is a mixed blessing. A recent AARP survey found that people actually don't want to live to be 100 anymore because the fact is, we don't have systems in place to care for the current generation, let alone the massive 76 million strong baby-boomer generation. How are we going to pay for care? How are we going to be able to keep loved ones at home?


So there are some very tremendous issues that all of you represent today. And one of the reasons, as Norma mentioned, that I need pom-poms up here, is because when you get into it and you start - and I know that all of you know other caregivers, and perhaps many of your own peers and colleagues are also caregivers - it's very big and it is a tidal wave of demographics coming down on us. So there's that issue. There's also the emotional issue, and it's what I keep coming back to, because it underlies every single act of caregiving that we do.


How do we negotiate this life passage with greater ease and dignity? How do we become good caregivers and good consumers of care services? When you can take yourself out of the equation, this is when the actual journey begins and it is very much a hero's journey.


I imagine that very many of you are familiar with Joseph Campbell's works - I don't know how I actually came to his work at the time I was caregiving, but I did , it was serendipitous. I began to see caregiving as a journey where we are called to action. We go into an emotional wilderness. We are tested and tried, helpers arrive, we find a way out, and we come back ideally more mature and with a boon of wisdom to share. And I find this is very true of caregiving. You don't see it when you are in the throws of it, and you certainly don't realize it at the beginning of caregiving. But it does very much open us to a kind of hero's journey that reveals our inner resources. And it is often when we do hit bottom, at that bottomless point, when our inner resources kick in. We give in and we think we're giving up, but actually we're letting go of old ways that have hampered us in our beliefs, in our reactive behaviors, and the ways we've been socialized to be ways that are no longer applicable or appropriate for this task that we are doing.


Family caregiving entails great loss: loss of faith, loss of identity, independence, lifestyle, dreams, and of belief systems. The feelings of loss breaks open these old patterns. Thrust hard against ourselves, often for the first time, we are overwhelmed by a seemingly relentless sense of loss and lack of direction. But this is not all that there is, and this is not all that we are. To find our true selves, the core of our being, our true nature that is interconnected with every living thing, we must face our belief systems and our demons and see them for what they truly are. Caregiving is about facing our fears: our fears of death and our fears of inadequacy. And to represent this, I want to read from a story that's in Chapter Five of my book on Spousal Caregiving:

When Devara was 35, she married the love of her life, Derek - 18 years her senior. A superb recreational athlete, when he was 59, he began to get cramps biking to work. When they didn't subside, the couple visited a neurologist who delivered the news with a piercing blow. 'Derek has Parkinson's and there's nothing I can do to save him.' Wanting a second opinion, they trekked 100 miles to a famous neurologist whom Devara found insensitive and arrogant. But when he conducted a simple exam to measure mental capabilities, Derek couldn't add 25 and 10, didn't know the day's date. She had a foreboding sense of terror, and that night she wept in her husband's arms. Both for him and for their future. The diagnosis eventually was given as Parkinson's and dementia, but no one explained to them what that meant. So Devara, a pharmacist's daughter and former health researcher and planner, began to educate herself.


For the next four years, she tried to be the perfect wife, friend, and caregiver. As Derek's illness progressed, his cramps became more painful and the dementia worsened. While still working and caretaking full-time, Devara studied up on his medications, researched comfort care alternatives like faith healing, aromatherapy, acupuncture, and physical therapy. She hung his sheets outside so the scent of fresh air could permeate his bedroom. She made sure he was well fed and comfortable, did everything she could think of without support from family or medical professionals.
Eventually she took a leave of absence to care for Derek full-time. Every day the diseases extracted a pinch more. A word was lost, an emotion vanished. He was becoming so frail, that the time came when he couldn't even exercise in the pool. Then Devara's days grew terribly long. Every day she had to lift and carry him from their sunken living room to the bedroom, adding to her exhaustion and desolation. For 11 months she continued on this way, immersed in grief, sleeping three hours a night, if at all.


Then home health agencies sent a marvelous nurse and wound specialist who took over some of the chores and taught needed skills: how to prepare low cost nutritional shakes, how to change Derek's diaper without hurting him, how to change the dressing on a gaping bed sore. Most especially, she offered compassion and reaffirmed Devara's worth as a loving caregiver - something no one else had done.


But Devara was already becoming a danger to herself. When time came for a wheelchair for Derek, she waged battle with the durable medical supply system, outraged at the lack of compassion and guidance. When she needed a ramp built indoors, it took 15 calls to get an affordable contractor. When the wrong air mattress arrived, she became hysterical, and when she had to fight insurance companies over health care coverage, she cracked. 'I became verbally and physically abusive to Derek,' Devara says. 'I was absolutely appalled, because I was manifesting these behaviors that I would never in a sane moment manifest. I was watching myself do it and yet I was so out of control that I couldn't stop. I couldn't believe I was being abusive to a vulnerable person, and worse - to the person I loved most in the world.


Rescuing strength from love, she pulled herself back from the brink. And when, after a few days, her tormented behaviors passed, she went out into their breezeway and had an epiphany. She vowed that not only would she regain control of her life, but she would also help other caregivers.
And that's exactly what she has done.


This is just one experience, and it is a dramatic one. I know that you all have had experiences or have heard them, that are also very poignant, but my intent here is to open up a perspective to see how together we CAN open our heart's capacity to hold the grief and loss that is inherent in caring for loved ones and facing end-of-life issues. There is a Greek legend that powerfully elucidates this very unconscious part of the journey that we go through, especially when we begin caregiving, and it goes like this:

If you were travelling to Athens, there was a road that you had to go on, and it represented the road to success. In order to travel this path, you had to pass by Procrustes, who had a bed, and he would put you on his bed. If you didn't fit, he would make you fit. If you were too short, you got stretched to fit, and if you were too long, something got cut off so that you fit. And I think that this story is just incredibly symbolic of how we try to fit ourselves into what we THINK we are supposed to be doing, or how we are supposed to be, and how we are supposed to manage.


It "don't" work. It just is not applicable in this situation, and one of the things that I try to do in helping raise awareness of these issues, is to note that each act is not a big dramatic, burning-bush event. They're very small, little awarenesses where we realize that we're not acting out of what we intuitively believe is the right thing to do but instead we are trying to fit into what we believe society or our family want us to do. And we are not really paying attention to these behaviors in "normal" times, but in times of crisis. It's very important to pay attention to why we're making the decisions we're making or why we feel compelled to make certain decisions.


It's probably the most important piece of advice or suggestion that I can give: to pay attention to the reasons behind the decisions, to try to get in touch with that. Being socialized is a normal thing that we need to do to live in society; we are molded into what we are taught to believe is normal and right and best. But it does cut us off from our true voice when an aspect of ourselves is rejected or doesn't measure up to one-size-fits-all expectations. All parts of us do remain somewhere, however. The hidden pieces are always still linked to us. All of the goodness that we have ever done is still a part of us, and these are the resources that we have to draw on. The task, therefore, when you look at caregiving as a practice, and even as a spiritual practice, which I do believe it is, a path with HEART - is to recover those pieces and restore balance and a sense of wholeness, so that the ordained and prescribed fears can no longer overpower us.


In caregiving, when so much wisdom is required, it is time to listen to these deep feelings of guilt and helplessness, inadequacy and despair. We have legions of names for them, and especially to depression and isolation. It is time to bring loss into the light of wisdom, so that we will see our feelings of isolation and our separation from our loving nature as illusion. It is time to understand the nature of loss and the fact that we do have power over it. Buddhist meditation teacher Jack Kornfield, in his book "A Path With Heart", says it very well. He says, "We must allow ourselves to feel the loss in letting go. There is no way to avoid the transitions of life. The chief means of entering them gracefully is to practice the mind for them over and over again." And caregiving does give us this chance to keep doing this, to keep paying attention to the quality of care and the kind of care that we are so capable of giving, but that we're so afraid we're not, because of what we have been conditioned to believe about ourselves and death.


This is the moment of truth, however: we have been called to serve. If we do not turn away - and I never have met anyone who has, despite poor relations with whatever family member or person they have been called to care for - but we have been called to venture into very new territory. And it does show us our limitations and that is a very frightening thing. In my work with caregivers, I would say that that is probably the number one subject of concern that comes up. "I feel guilty", "I don't fee adequate", and "I don't feel balanced", often "I feel crazy". I certainly did, and probably was, and perhaps still am, but it's an okay kind of craziness now, because these are very normal feelings, and we really have to allow ourselves this full range.


This is part of the grieving process, and there is a huge range of very normal feelings. Even to the point of feeling dysfunctional, and it's a matter of how we go in and deal with that, but our lives really are presented to us like a head on a platter of Biblical tales. This is what we are. We're not just dealing with our loved one, but we are very much dealing with ourselves. So, it's sort of a double-edged blade here. And it's important to understand that there are a lot of issues here. It IS about good care, but it's also about good self-care. Caring for the caregiver is probably more important in certain ways than caring for the loved one. It's the good old salt on the airplane: you've got to put on your own oxygen mask first in order to help the other. And it's really true. You can't give your best care if you're not caring for yourself, and that's not a selfish act. I can't stress that enough.


There is, very much, a stage of emotional wilderness on this loving journey. That's where most of us get hung up and where we don't really have rituals and signposts and guideposts in Western society. But they ARE charted. They are charted in wisdom traditions, they are charted in religious traditions, and they are charted in mystical and theological traditions. They really are everywhere. They're in fairy tales. They're in myths. They're all over. Again, one of the reasons that I wrote the book was to help chart these signposts and passages with the overriding message being that: you are not alone. We really are not. Obviously in this room, I think it is very clear that we are not alone at any level. It's just a matter, partly, of recognizing that you are on this journey, and being willing to reach out. The doors will not be closed and it is not a sign of weakness to do ask.
The other great gift - the hidden gift in terms of rewards that are presented as we enter this very dark night of the soul - is that we do discover that we are caring people. We would not be here if we were not. It's not something to be minimized.


By focusing on the love rather than on the stress and the problems, by reminding ourselves that this is what we're here to do, we do open a doorway where the way becomes much wider. And we do begin to bear the unbearable. And this most often happens when we feel we've hit bottom. We release our fears and our worries over which we really don't have control and there is a great sense of relief to discover that we do have more power and control than we realized. It comes through compassion. Compassion for our situation and an understanding that everyone suffers. We all have loss and we all suffer and we all are very much connected with each other at this level. And that's what raises compassion. And it is compassion, then, that guides us on the way back out. And it seems like a platitude, but it really is not. It is a very real, real manifestation of the good work that's being done.


It's the ability to hold the joy and the suffering in the same moment. And it's a tremendous reward of caregiving. In some ways you don't wish it on anyone, but in other ways you wish it on everyone because it is the way that we connect and build out from here. And I will get to that.
When we have reached the point at which we are open to change and self-discovery, it is said, "Helpers arrive." They are called forth because of adversity and danger. They are also part of who we are. Mythologist Michael Mead writes in Men and the Water of Life: "Helpers appear when a certain depth of desire becomes set in the human heart and where there is nowhere else to go. The companions are part of the human heritage. They are ancestral forces that become available at the last hour. They are capacities and powers acquired through conscious suffering and a genuine sense of purpose. In the sanctuary of the heart, where the greatest protective power and resilience reside, innate wisdom thrives and is waiting to be remembered."


According to psychologist Lorna Catford in The Path of the Everyday Hero, these resources represent the deep well of wisdom that the hero has in reserve and are also known as grace.
So, what propels us out of our darkness is our own momentum. Others may lead us to the threshold, but we alone make the crossing into light. No matter that we may be inept to solve every problem perfectly; our hearts have opened enough that we are no longer shipwrecked. In our meetings with the unexpected, we have arrived at the welcome truth. It is possible to find meaning in suffering. Compassion and a more fluid approach to life lead home. We return the way we came, but with a new heart, new eyes, and new ears.


I believe what caregiving points out is that we are either trapped by our beliefs or we are freed by them. To the extent that we grasp and identify with physical reality alone, we suffer. If we resist the fact that everything is impermanent, insisting on rote agendas that have no relation to these cycles of life, we remain unable to feel fulfilled by what we have been called upon to do. But if we can allow for possibilities, then we will not get caught up short when major change is heralded. There is incredible potential for freedom in the human heart that leads not away from the world, but toward compassion no matter what happens. What it takes is a rededication of intent and patience. Then we may choose, moment by moment, our reaction in any given set of circumstances. Even if they seem impossible.


Our wider purpose takes us beyond pain and sadness, and releases us from the ways that no longer inhabit who we are becoming. Rites of passage cannot be predicted, nor guaranteed. Any step can lead us off course, just as any step can lead us home. Each juncture of the journey offers choice. And this is what I believe is most important - that we do always have choice. We can shut off or we can respond. We can be poor babies and victims or we can take responsibility. Cultural anthropologist Angeles Arrien has charted this great adventure of the second half of life. It is a time that fairy tales reveal as the return of magic and wonder. Mid-life is a chance to resurrect the dream we have been born with, to make the great crossing, as she calls it, and create the legacy of why we are here. It is a time for reparations and humility, of mercy and grace. She says, "So often we associate the second half of life with illness and depression and giving up and waiting for death to come. But the truth is, that midlife is a threshold where creativity can burst you wide open and real intimacy finally comes into your life.


And this really is the whole message of the loving journey of caring for someone. This is a tremendous opportunity and it comes through this very narrow gate of pain and suffering and fear and loss and all the truly tragic and seemingly negative emotions that we do suffer. And the power of those is very real. But the power has a balancing effect on the other end, and that's what I really do bring today - a message of great hope and reward in the very loving acts that you are doing all the time with your loved ones. It almost is a cosmic joke that we could actually derive so much benefit from giving care, but we do. And those of you who are involved in hospice and volunteer work and other activities know the very great gift, how wonderful it is to give back. Which is another reason why we shouldn't be ashamed or afraid to ask for help, because it gives other people a chance to give and to give to us. And there is nothing that's more richly rewarding than doing that.
But what caregiving also shows is that we can do this together. And the great reward in it is building these networks of caring people and caring communities, which is something that CARE Services is developing for all of you here at UC and is just tremendous also at the Center on Aging - to provide networks of support. We don't do this alone and we can't do this alone. That's why it's so important to reach out and ask and give everyone the opportunity to share the wisdom and the great lessons that you all have been learning. As well as the very practical aspects of where do you find someone who is reliable and affordable to come in six hrs a day and give care to your loved ones so that you can go to work?


There are a lot of stories that I could tell you. Some of you may know Deborah Hoffmann, an Oakland film editor who did the very marvelous work called "Complaints of a Dutiful Daughter" that was nominated for an Oscar two or three years ago. It is about transformation. It is about letting go of conceptions and our preconceptions and opening our perspectives. Her mother, Doris, was married to Banesh Hoffmann, who was a colleague of Dr. Albert Einstein. They were a tremendously intellectual family and the mind was the most important power; it was the ivory tower. Although they were very caring and good people, all the emphasis was put on the mind. So, when Doris began to have memory problems, it was a great shock. They were all in denial. With further levels of loss, and loss of identity - the video is actually very funny, I cried all the way through laughing, it was just tremendous, but it is very true particularly of Alzheimer's and caring for someone with dementia. The levels of inferno and loss and "how do you deal with this loss" and "how do you deal with the loss of relationship" in particular, and your dreams, and your beliefs of what you thought was important. So, I interviewed Deborah again, and here is what she said:
"All of the literature, the personal stories about Alzheimer's, they all refer to the devastation. And I agree, but they also refer to a person's loss of humanity and I just don't agree. Even though my mother has very little recollection of the past, I don't believe that translates into a loss of humanity. It is shocking to us, who rely on memories of the past, but she is truly, truly living in the moment. The ultimate enlightened person. I sense her spirit and her personality very much there. Sometimes, someone will be sitting next to her, worse off than her, no verbal ability left, and my mother who had never been particularly affectionate, is holding her hand, stroking her hair and her face. How can you possibly say that is a person with no humanity? We have to separate out what we're going through, and what the actual person we're caring for is actually going through. I'm very attached to my childhood memories. They tell me who I am. But it's clear to me, that you can still be somebody without it. You still have definition without a past. What is most difficult for people is that they are no longer linked to the past the way YOU are, so they're not linked to you in the way you want them to be, and in the way that you're linked to them. I would be thrilled if she remembered that I am her daughter, but it's not a loss to her. It's a loss to me."


Flexibility is one of the gifts on the path of return, which is set in motion during this incredible rite of passage. It comes from being more concerned about doing right, than about being right. Case manager, Pat Coleman, who has counseled many families in crisis, has found that usually it is the caregiver, not the care receiver, who must change in order to make the situation workable. She says, "We are fixated that mom or dad should behave a certain way. We want them to behave like that, because that's what we know. We want our parents to respond the way that parent has always responded, that it's the caregiver who has to change. We have to say. 'My mom is dying. She's dying in this way. And this is the biggest tragedy of my life.' But when we can go through this process, then we can begin to change."


Rites of passage recover a sense of wholeness and proportion and definitely of purpose. And this is a frequent archetypal theme in myths and tales, where the magic of happiness is possible through new eyes. Artist and author, Gertrude Mueller Nelson, who lectures on myth and fairy tales, explains in her book, "Here All Dwell Free": "Those unfulfilled, yet possible fantasies have their place. Through imagination, we cultivate what might become possible. We cultivate such fantasies because they represent a primal urge to a restructuring of our whole society and redemption, so that we can finally achieve home. Because the return home was the long route around and into and through what had become stuck, repressed, forgotten, handicapped, and unfulfilled."
This is the other side of the coin. Caregivers say all the time, "How do I get my life back? I don't have a life." They feel they don't have a life, but the truth is, caregiving is now your life. This is your life. You don't have something out there, and there's not something that you can go back to. That's not there anymore. Elements of it certainly, but nothing is the same.


This is an overwhelming life event. And we cannot minimize the power of this event and the fact that it has changed our lives. It's not about dreams and plans and past and future. It's about right now. It does make us feel schizophrenic. But it's functional now, so you know, it's a label that we don't need to worry about.


It's a matter of being caught between your old life and this unfamiliar new life and you're kind of suspended, ideally, in a hammock between these pairs of opposites. It's all right to feel this kind of emptiness. It's important to allow this sense of emptiness and not knowing, because it's from there that you move forward. You can't carry all the baggage from the past, and you certainly can't open your heart if you carry all that baggage. You just can't take it with you. It doesn't happen.
My father forever said, "I am more than the sum of my illnesses." And that is such a deep and true and wise voice and it's so important, especially when we are bombarded with media, that again, says that they only life worth living is one without wrinkles, and one without illness, and so forth. It's just not true. And it's not real. And we can't allow ourselves to buy into that. That's not the world that we live in and that's not the world that we're asked to give care in. That's not where we live in our hearts. And it's not true.


The voice that tells us the truth is in the present moment. And it is in our heart. And you know that when you reach out and you give care to someone, that place is always in the moment. And you connect in that place. In that moment, you are connecting with everyone else who has ever done this kind of work, and who has ever given care, and given of themselves in ways that we never imagined. We never imagine we'd be called on to do this. But we have. And we do it from our hearts. We don't do it from our minds, and it's important to be able to separate that out. It's not even a matter of dignity, but as I said before, a matter of relationship. And that relationship starts with ourselves. If we cannot accept ourselves, if we go into depression and criticize ourselves and chastise ourselves for not being good enough and not doing enough - and boy, is that easy to do - we can't move forward.


It's critical important that we do move forward. We can become and we do become very self-absorbed in it, but as long as we keep our eye on the real purpose, and we know that we're moving forward - you need to be in that place. Because, that's the only place where you can develop the kind of heartfelt capacity that allows you to change, to do this work, and to move on after this work, and feel a sense of justice and of healing, and of goodness in your hearts and in the world. And recognizing in the world how much good there is.


There is the everyday world where we need to do the tasks and that is personal. We do have our jobs and our rules and it is important to be responsible to those, but beyond that we do connect on a very universal level in our hearts. And it is through this work that we do discover that we have the capacity to love unconditionally. To look at each other without seeing each other as disabled or sick or old or whatever we do, we aren't that. We are much, much deeper than that. And caregiving gives us this incredible potential to override those ways of seeing and looking at each other and becomming far more compassionate. To stretch our hearts and our capacity to care forever.
I want to leave you in part with one other story that I love so much. I think it summarizes everything. It's a local choreographer whose father came down with Parkinson's disease. Allan was the secondary caregiver, whose bother was the primary, hands-on caregiver, but Allan would go in and use his teaching and his creative methods to help his father communicate or he would just sit with him. And he talked a lot about this time shift that would happen, where everything was slowed down, and he would just learn to be with his father and receive instructions. Allan says:

Dad was like a Zen roshi: inscrutable. He was educating us. He was a very centered person; at the end of life, he just got more quiet, bringing you back to the center even more, just because of his presence. Whatever was bullseye and in Dad all along, he kept to it, but just magnified it.

Allan says he's gone through entire worlds of being transformed by the grace of sharing a parent's dying. I quote, "It comes on so gradually, like the way a shadow comes over a building, the way the light changes. It's like you have a secret knowledge that future caregivers' entire opinion of life will change. It bends you at first. I'm in the responsible parent role now with my daughter, and it's almost a revelation that you could take on that kind of adulthood. Initially, there's this spiritual pinch of continually having to be patient and humble and suffering another indignity, and then this ridiculous complexity of paperwork that is like a frozen maiden in your house, that seems to be uncaring.


"With elder care, you may find out how to work the system, but it's an all-encompassing overwhelming deal. You just want to go to the beach when it's over. Caregiving is an entire world. It's an entire engagement. Once you go through it, it's so spiritually transforming. It's very important to have some kind of closure. Near the end, it gets very mysterious, very intimate. It's such a big process. It's a walk into what you thought was a dark and unfamiliar land, but you find out it's your living room. You find out it's in between picking up your kid from school, and going to work the next morning. And it fits in with you life and your little benchmarks and you're watching yourself grumble about it, and he's got a week to live, and what are you going to do after Dad dies, and it's a relief to him?


There's this poignant kind of humor to it. It's a very normal set of events at the human level. Every moment of your life, you've basically got the secret. So, you see people getting pissed off and impatient and there are people sitting in hospital beds wondering what the meaning of it all is. And this is like flutter, flutter of wings past and you realize you have only a few moments here.
"You will have frustrating moments like money and traffic jams and who's respecting you. But if you're not established in the poignancy of the gift of being here, then you really missed the boat.
"It's a privelige to know that life has a big trick to play on you. In your last days, you see it really was a few moments. And if you had been more aware and conscious, you could have enjoyed a lot of them. This death story from my mid forties is probably the greatest gift I could have gotten. TO LOVE AND BLESS YOUR LIFE.


I want to leave you with some concluding thoughts, and then we can have time for questions and answers.

Doomsayers would preach that the world has been overtaken by rage, greed, and resignation. I think that if you look into the back rooms of caregiving families, you will find the true nature of things as they are. Beneath the veneer of social conditioning and confusion, stereotype and illusion, there you will find great kindness and devotion, a trust of life that surpasses doubt or pain. There you will find the highest expression of who we are.
If we close our hearts to suffering, we cannot open them to love. Every benevolent act counts. By surviving the difficulties and holding onto goodness, caregivers inspire others to summon the power of the spirit. Humanity can emerge from violence and carelessness into an enlightened age of caring, when the lessons of grief will be honored. Exemplified by modern day heroes, the caregivers, who fulfill the age-old mandate - TO GIVE.
Thank you all so much for being here and for listening, and I wish you all Godspeed. Thank you.

Questions and Answers

Q: I'm just curious about what you teach at San Francisco State?
BETH: Oh, [I teach at] UC Extension Santa Cruz. Half of it is the practical "how to." We deal with home care, housing, legal, financial, hospice. And the second part is for emotional part of it, the journey. I may extend to a full class, because that really brings up so much. People dealing with family dynamics and guilt.
Q: It's in Santa Cruz?
BETH: It's in Santa Cruz. I would love to do it up here, because I live in Antioch! So, perhaps we can work out something.
Q: So, you haven't talked up here?
BETH: Actually, I haven't talked up here. I should. I would love to do that here! This is where I got my degree all those years ago.

Q: You mentioned a video on Alzheimers, do you have the name?
BETH: It is called "Complaints of a Dutiful Daughter". It's in the Center on Aging Library. It's from 'Women Make Movies'. It actually is in the resources in my book as well. Deborah Hoffmann. Also, it is available at your local library.

Q: While you were experiencing the trauma with your parents, were you writing a journal?
BETH: Excellent question. I actually did, because my nature is to write. And from the moment that my father told me that mom had Lou Gehrig's, something clicked in and said, "This means something. Take notes," because I knew that I would never remember. I was always in such a state of shock, so whenever I was on the phone with someone, I took notes. I tried to sort out my emotions through my dreams. I have a very vivid dream life, and I did write things down. And then the year following my parents' death, I actually wrote a book - not this book, I adapted my memoir portion of this book from that. It was my therapy, I guess, to write everything down and sort through my demons, because I felt terribly - well, I was so depressed, but I just felt ill equipped to live in this world. I was probably suicidal for about a year. I couldn't deal with what had happened. It was too overwhelming to lose them both at the same time. So, yes I did keep [a journal], which I recommend to anyone who is interested in doing that. And it doesn't matter what you say in it. It's just getting it out.

Q: What about your sister, is she older [than you]?
BETH: My sister is older. This was a family dynamic. I do have an older sister, but she fairly much distanced herself from the family about 30-35 years ago. [She] did not get along with my parents, especially my father. We came to an understanding where she was supportive of me, but it was very hard for her to go home. She did a couple of times and it wasn't a good idea! <chuckles> So, she supported me, and I was always and am still very grateful for that. But, no, basically I was alone. My aunt was there, but she was really incapable of sustaining any level of caregiving at all. So, that's why everything just fell into the abyss.

AUDIENCE MAN 1: Do you see any difference between being a primary caregiver and a secondary caregiver?
BETH: Good question. Yes, there is. There always seems to be one person who is the primary caregiver. And in families that are very close and have a lot of siblings, the secondary caregivers can do the financial management or make the phone calls or do whatever it is they have the expertise to do, but there is usually quite a different level in hands-on care or mental and emotional energy that goes into the care. What kinds of things do you do as secondary?
AUDIENCE MAN 1: My sister is actually the next level of care. My parents are in Palo Alto and she lives only a few minutes away and works very hard, but doesn't work outside the home. And then I go over a couple of times a month and take care. We have all different levels. I have other siblings and they end up flying down and taking care of our mom for a few days at a time. In some ways, it's a luxury because I can spend quality time with my mom when I'm there and can have that quality patient's time, but in other ways it locks into the guilt more. Because you can certainly always be doing more, and so I was wondering what...
BETH: You can always be doing more, but you can't do EVERYTHING. It's just not possible to think of every possible thing that you can do, and to do it. You just can't. Your support and the support that all of the siblings give is tremendous and I'm really happy to hear that you have that. You will always feel guilty, but you will also sleep better. You probably have more physical and mental energy, so that when you go, you're really giving fresh, good care and that's got to be an extreme relief for your father to know that he has that kind of support.
But one thing that I discovered that, for some reason I never got, is that my parents had a relationship that was totally independent of their children, and your parents - I mean, we're not everything! Parents have their own relationship, bad or good, whatever. But we're not the whole thing. So, that's their dynamic and it's a very common question that comes up, too: "How do I make my parents blah blah blah?" You [can't]. THEY have that relationship, so you don't need to deal with all that. You just support it. But that's not something that you CAN influence or deal with. So the support you give them is excellent and I'm sure that it IS enough. If you think of something more that you can do, I am sure that you will do it. But, the fact that you have so many people who contribute is really great.
AUDIENCE MAN 1: I guess my question is somewhat more connected with some of the other aspects that it - I mean, [not] in terms of the loss and renewal, but the practicalities of having to dress - whether there is a difference in your mind between being primary or secondary caregiver, sort of on how to deal with it on the emotional side. (?) [speaker is partly inaudible and this is my best interpretation]
BETH: It depends on the relationship. You actually may be closer to one of your parents than the primary caregiver, emotionally, or in terms of your interests, or you have different relationships with each other and with your parents. So, that will be the journey that you go on. And they're all different, but they do have that same level of guilt and concern and things that we just do as human beings. But that's also a sign of your caring. It's not a negative thing. It's a sign of how much you care and how much you want to do. So, shift that perspective and don't worry about the guilt, but just look at the relationship. (INDECIPHERABLE until) We do that to ourselves. We just do that to ourselves.


AUDIENCE MAN 2: The other side of that is that often, people have bad feelings about the one who is not the primary caregiver. So, even though these things work out [because], "It just happens that way," or one person is able to or one person is too far away or some people are more caring than others. But, I can say from experience - I took care of my mother and I'm taking care of my sister, but [there was resentment for a long time] (??), until I came to visit with him (?). He, in his life, does the best he can. He struggles with his feelings about his mother, and he's not going to be a family caregiver. He's going to be a once a week visitor. So, I finally realized we do that to other people who are not the primary caregivers. We've got to let go of it. Other people who are doing it to you have to let go of it. Because we do the best we can. He is clearly doing the best he can. [He has a ] father, he has a wife, he has a son, he has a mother, he has problems, and he's doing what he can do. (Inaudible) We just can't be resentful of the ones who aren't giving as much. Somehow, they don't have it in them to do it.
BETH: It's an excellent point. It's true. I was very resentful against my employer for a long time, because of a lack of support, and then I came to understand that they were doing the best they could do. It wasn't as much as I needed, and I was terribly needy because no one else was going through it. So, I really was all alone. But they weren't ignoring me, they just couldn't deal with it. And it was the same with my family. There was just no one there. They couldn't deal with it. And it's an excellent point. I thank you for mentioning that. Family members do criticize other family members. And we find that a lot from the aunt and uncle level, for some reason, "You're not doing this!" And then of course when it's offered to them, "Well I'll turn over the power to you," it's "No thank you." But you're right. You have to demand. You have to learn your limits and set them, because it's a different set of circumstances requiring a very different parameter around ourselves to stay sane. Good point. Anyone else?

Q: Your internet address?
BETH: http://www.thirdage.com and there is a new caregiving center. There's also a forum and a chat that's listed there. So, you're all very welcome to come. The forum is a message board where you can post.

Q: Are you giving a class this summer?
BETH: Not this summer. I am speaking on July 20th, with the other Beth Macleod's course in the School of Social Welfare. It's a six-week course on - I forget the title.

I will do a book signing. They're available here for purchase. I can sign and answer questions. Thank you all very much!

 

More of Beth's story can be seen on the WEB at: http://www.ahealthyme.com/topic/bethstory