Talking With Beth Witrogen: Caregiving as a Spiritual Journey

The author of "Caregiving: The Spiritual Journey of Love, Loss, and Renewal" reflects on how the blessings of caregiving outweigh the burdens.

Like everyone who takes care of an ill, elderly loved one, Beth Witrogen is well acquainted with the hardships of caregiving. In the early '90s, she was a long-distance caregiver to her mother, Elaine, who had ALS-plus syndrome -- ALS (or Lou Gehrig's disease) and Alzheimer's -- and her father, Mel, who had cancer.

Tied to a job in San Francisco and armed with a Wichita phonebook, one of her only resources, she would make calls and arrangements for her parents' care from work, under the disapproving eye of her bosses. Then, every six to eight weeks, she'd take unpaid leave to visit her parents in Wichita, each time finding that her mother's condition was worsening so fast that she couldn't keep with it. By the time of her parents' deaths, she was financially and emotionally devastated.

But Witrogen also found the experience of caring for her parents to be a profound spiritual journey. In Caregiving: The Spiritual Journey of Love, Loss, and Renewal, published in 1999, she writes about caregiving as a rite of passage, an internal journey as well as an external one, that can lead to a much richer life.

Examining aging, loss, and grief through Judaism, Christianity, Buddhism, Hinduism, and other beliefs, Witrogen writes that it's through opening oneself up to the intense emotional pain and grief that is part of caring for a dying loved one that a caregiver is able to grow and find new strength.
Witrogen went on to lead an online support group for caregivers, develop a course called Taking Care of Your Aging Parents for Barnes and Noble University Online, and work with the American Society on Aging/National Alliance for Caregiving to build a Web-based resource center. Since the death of her husband, newspaper photographer Bob McLeod, from lung cancer two years ago, she continues to be a consultant, writer, and speaker on spirituality and women's midlife passages.

Witrogen spoke to about the loneliness of the long-distance caregiver, why caregiving is "women's work," and bringing new meaning to this difficult task.

What did you want caregivers to get from your book?

First and most important, I wanted them to get that you are part of the caregiving equation and you have equal right to take care of yourself and love yourself. We -- especially women -- have such incredible perfection pictures about doing things perfectly and being good enough, and being pleasing and accommodating.

There are several levels of what's important for caregivers. On the physical level, it's self-care. Emotionally, it's understanding that there's no right or wrong way to do this. It's a very creative, labyrinthine, deep process. Thirdly, it's a spiritual journey in that it's about relationships and self-love.

I find that caregiving is an extraordinary mirror showing where we aren't compassionate with ourselves. It's amazing to understand that the frustration, the grief, all the Sturm und Drang that we go through is not just about the eldercare, but it's about where we have not lived fully in our lives.

How do you mean that caregivers are, or aren't, part of the equation?

I've met thousands of caregivers by now, and there's hardly any who haven't felt guilty and thought, "Where's my life gone?" Or, "I want my life back." Where the life went is that we unconsciously, and unknowingly for the most part, took ourselves out of that equation, feeling that we weren't entitled to the same level of care and compassion and mercy and nutrition as the person that we're taking care of.

Women are so traditionally in the caretaking and codependent roles, we feel that we're not being good girls and nice daughters if we aren't martyring ourselves. And caregiving, like aging, is seen in this culture as a pathology, instead of being understood as a very clear midlife passage, especially for the baby boom generation.

Could you elaborate on the idea of caregiving as a pathology?

First of all, when someone gets ill, the culture sees it as if they've made a mistake. And we're supposed to be happy, sound-bite people. So if we have frustrations or feel guilt, resentment, anger -- all the things we normally feel in this passage, because it is a process of grief -- it's seen as something that needs to be medicated or controlled rather than experienced as part of life.

We're a death-denying and age-denying society, so that makes it difficult to do the deep work that caregiving calls us to do, should we choose to accept it.

Do you think that image of women being good girls and martyrs is changing?

It's amazingly prevalent. I'm a rock climber now, and a lot of people I know at the gym are in their early 20s, and I see that the women are still socialized to be very pleasing, caretaking, accommodating. I'm not saying that's a negative. I'm just saying that it's not balanced.

Caregiving kind of condenses or crystallizes the way we are; everything becomes so intensely focused, so all of our gifts and hang-ups, if you will, come to the fore. And we're dealing with things we didn't know we'd have to deal with -- the whole family dynamic and sibling dynamic.

I call it a midlife passage because it's showing us the places where we haven't been fully alive and true to our own lives. It can be very deep and transformational.

There is a point at midlife that shows us that often we've been living someone else's lives -- the lives that our parent wanted or our families wanted or our culture wanted. But that's part of the spiritual journey -- it's not a mistake. If people choose to accept it, it's an opportunity for transformation, to becoming authentically who we are and living far more fully and joyfully than we ever believed possible. And I can say that at a very personal level. It can be hell, but boy, there are many gifts!

The reason I like to talk about it as a spiritual journey is because even though the individual physical structure of a family or its history is unique, at a psycho-emotional level, we all go through the same stuff.

You were 43 when you became a caregiver to your parents. Where were you in your life?

I was running the copy desk at a San Francisco newspaper and my husband, Bob, was a photographer there. And my life as I knew it ended at the moment I got that call. I could not believe that my mother was going to die.

We made plans to go home for my mother's 70th birthday, which was about a month later, and I hadn't been home for six months. When we got there, I was stunned because the house that had always been immaculate was just filthy. My father had become more disabled, less ambulatory, so my mother was carrying food to him, but because she couldn't hold it, it would spill on the carpet.

They had curtailed things like having someone clean their home because they were in financial difficulties, which I didn't know, because my father wasn't able to work as much. So I discovered that they were really going down the tubes healthwise, financially, in every way. It was horrifying because I had never seen my parents like that.

So a huge change to happened within just six months?

Yes. As parents typically will do, they had been protecting me from that information. Thankfully, I turned on my reporter mode, and I started trying to find community services and assess what they needed, which was very difficult because they wouldn't admit what they needed.

How did you manage caregiving from a distance?

I hooked into the ALS community -- well, actually we went through the muscular dystrophy community, because there wasn't really an ALS one. There was no Internet yet, so I really didn't know if there was one. They started advising me about assistive devices. And I took a phonebook back to California with me and started calling people long distance, at great expense.

In those days, I had to take unpaid leave and we had just moved into our home. I ended up going back every six weeks, which was not appreciated at the paper, but there was no other way to do it. And I would get phone calls constantly at work, and I was very concerned about that because I had a lot of responsibility and constant deadlines.

It was incredibly stressful, and I never really knew what was going on. My mother couldn't talk on the phone and I knew that my father wasn't telling me the whole truth about things, because when I would go home six or eight weeks later, I would discover that my mother was so much worse all the time, physically and emotionally.

Because of the Alzheimer's, I was also dealing with the paranoia and the violence and the change of personality and the anger. And through it all, my father never wanted my mother to know what she had, so she was never told.

Were you able to get them home care?

I had to keep arranging for home care -- we were paying $15,000 a month. My parents had an income of $1,300 month. My father's medications were over $700 month even at that time, and their mortgage was $300, so they had about $300 to live on. All of the home care was out of pocket.

What did you do for money?

I was able to hook in with the Jewish Federation there, and they were able to give my parents something like $900, which helped. My husband and I chipped in everything we had, and then I had to do a fund-raiser in the community.

My father had been an extraordinary fund-raiser and community builder, so I was able to tap into the many communities that he had helped over 40 or 50 years. I raised about $60,000. That was a gift that I could never repay. I was so grateful.

That kept them home, but it was clear we needed more. I was eventually able to get them into hospice, and then they had to go into a nursing home because my father had to have a morphine line implanted -- he was on morphine 24/7 with a pump.

The medical team had wanted to separate them for a long time, but I just couldn't do it, so I waited until the last possible opportunity and got them in a very good nursing home together. My father died three months later, on Thanksgiving, and my mother died five weeks after that, on New Year's. My 44th birthday was in between.

You've said that the joy of caregiving is in staying connected to the beauty in life. How were you able to do that?

It was a very painful and stressful experience, and we were bankrupted financially and emotionally at the end. But the time that I spent with my parents was just golden, just precious. When I would bathe my mother at night, she'd put her crippled hands on my head when I knelt down before her and she'd say in a gutteral voice, "Thank you for everything."

She was always thanking god for me -- there was only love at the end. I died a million deaths with that one, but my parents also gave me a new life because they were so philanthropic, and I've been able to turn around in their honor and hopefully give back to others.

So your mother was lucid enough to thank you every day, even in the throes of dementia?

What would bring her back would be looking into her eyes. Her whole present self would come back. Love really brings a person back. And it was a real challenge to stay in that place, because the stresses of just managing their care were so huge.

Was that one of the spiritual aspects of caregiving?

I was always determined to bring a spiritual element to caregiving. To me, that means to allow "what is," to just be present with them and not try to judge and control what's happening -- not that I always succeeded in this. But I just found that when I looked into my mother's eyes and I saw the love that we had, she was there.

There had been a personality change, yes, but that was one aspect -- that's not all of who my mother was. Who my mother was, was the love and connection. It's true that it's hard to find that person, but you have to be willing to have a shift in perspective. It's a great path of forgiveness and compassion.

My father often said, "I am more than the sum of my illnesses." By that, he meant: I'm a whole person and if you're only seeing this sick person in bed, you're missing who I am.

When someone has Alzheimer's, it doesn't mean they're stupid or unable to perceive. It means they're not relating to you in the way they did. So you don't have the past that you had, but that puts you totally in the present moment. They still have a personality and behavior, but maybe you have to change and adapt as well. That's the difficulty. It's not about them; it's about you.

Caregiving is a call to love because you live at the edge for a long time -- it's kind of a fringe existence -- and your heart is stretched and stretched more than you thought possible.

I believe that we're called to midwife grace -- it's really a call to love and to care, in a very different way. It's not about having yardsticks and scorecards that are somebody else's.

What other people made you feel that you weren't measuring up as a caregiver?

I felt very judged by certain members of the healthcare team. Not by hospice, however. That was the first opportunity I had to be real and talk about death and not hide my inadequacies.

I remember that there was a social worker who continually made me feel inadequate -- I wasn't there often enough, I wasn't taking care of certain legal things quickly enough. But I was always overwhelmed. I was expected to do it all and be it all and know it all, and I just didn't.

The worst part for me was at my job. When I came back one time, I said I needed a day off and I wasn't given a day off. I wasn't asked how I was or how my parents were doing -- the personal aspect was just ignored -- and when I had to go home again, it was a constant inconvenience to them. There were other people after me who were supported, who were allowed to go home and work from there and be paid.

So that's changed somewhat?

Yes, because of the sheer volume of people dealing with this now. And I was told that I helped raise so much awareness at the newspaper that it's changed there. I don't say it with any ill will and I understood it at the time. The fact is that I didn't know what I needed. That was the hardest thing. I didn't have the inner resources to believe that I was really doing a good job anywhere.

In your book, you reinforce the idea of caregiving as a spiritual journey by likening it to a Greek myth.

I use the legend of Procrustes. He was the gatekeeper on the road to Athens, which in those days was the road to success. He had a bed that he placed across this path, and everyone who journeyed there had to lie on the bed. If you were too short, you got stretched to fit the bed, and if you were too long your limbs got lopped off. Everybody had to fit this mold in order to pass on.

That's sort of the mindset that we come in with as caregivers. We bring the whole dynamic of our family and our society, of having to fit into a mold, and that isn't going to carry you too far. Caregiving is a pretty extraordinary circumstance, and society doesn't really support it at this time. It doesn't value the process of aging or death -- or caregiving, because it's still looked at as "women's work."

Do you mean that financially society doesn't value it?

Yes, there's no coverage for long-term care. Medicare was set up in 1965, when the demographic was totally different and the lifespan was different and healthcare was kind of affordable. But there's no structure to support families through long-term care.

Universal healthcare, caregiving compensation, all these proposals come up every few years -- we're in about the third wave of caregiving that I've seen -- but nothing goes anywhere. Awareness is starting to increase, however. It's shifted considerably since I went through this, not just because of the Internet but because so many people are going through it and so many politicians are going through it. It's a water-cooler topic now.

You talk about the concept that a caregiver needs to "lose" herself to reach this new spiritual place. Can you elaborate on that?

I'm paraphrasing someone who said, "You have to lose yourself to find yourself." I truly believe that boomers have that opportunity -- we've always been kind of a spiritual generation and the "human potential generation," and we're still looking to fulfill that promise and ideal that we've had since the 60s. And part of the journey of caregiving and loss is losing who we thought we were.

For example, I'm not a daughter anymore, I'm not a wife anymore. I don't fit into all these roles that I once had. So in that sense, you lose who you think you are in relationship to your family and social roles. If you hold onto them, you're going to suffer greatly because you're being asked during the process to change and to expand.

When you're caregiving -- hands-on or at a distance -- you realize that life is short. Why not take the risk of finding out what it is that you really love to do? You watch your parents die, and if they didn't do what they loved, you see an awful lot of misery.

I watched my mother give up her concert career to raise a family and to be my father's secretary, and she didn't do what she wanted to do. She was dying and she could hardly vocalize it, but she said, "I never got to do what I wanted." And you know what? She was right. She was a great mother, but there was a sadness when she looked back over her life.

Death is a tremendous advisor -- the writer Carlos Castaneda always said that, and it's absolutely true. It's not about death and dying; it's about life and living -- where we don't live, but where we can live. I look at the patterns and see what doesn't work anymore and where I don't feel fully alive.

What do you most wish you'd known when you were caregiving for your parents?

I wish I'd known that I was always good enough, and that whatever I did, I did with love. I didn't understand that my love was enough, but it was huge. And it was appreciated.

How should you have taken care of yourself?

Had I known what I needed, I would have started therapy. I would have taken better care of myself nutritionally and psychologically. I did a really good job with caregiving, but I didn't understand that because I felt guilty and resentful and exhausted and frustrated, it didn't mean I was inadequate.

I wish I had loved myself through it. I wish I had known that it was all right to take care of myself, and that that would have given me the energy I needed.

How can busy caregivers do this on a daily basis?

Breathing is very important. Take five minutes to be by yourself and be silent. Your mind may still chatter, but just turn off all externals -- the noise, the music, the television, all the input. Really detach from the voice that's multitasking and being critical, and breathe deeply.

Replace one of those Cokes that you use to get through the day with water. Have a piece of fruit. Just do one kind thing for yourself a day, and that will make a huge difference.

Look in the mirror and instead of seeing how fat you are, see all that your body is doing. Tell yourself, "I'm doing the best I can. That's good enough for now." Be good enough for yourself.

If you love yourself and care for yourself, then you know how to take care of someone else.



almost 8 years, said...

Wow, I'm grateful for this article. My Mom just passed away on Saturday, a few days ago. I'm trying to hold myself together, but spend part of each day awash in a myriad of emotions. There were many wise words here. As Mom did her best for me, so too did I do my best for her. Peace to all this holiday season.

almost 10 years, said...

wow. sounds like anonymous is still so angry he cant' think. I wonder if, when his wife was dying, he was able to have any sweet conversations with her or if there was any softness in his exchange with her at all. If there was, his anger seems to have overridden it. It's sad. We have no one to blame for these situations, but it's how we let go of these events we cannot control that make us go forward or let us dwell in a certain stage of our emotions.

almost 10 years, said...

Spiritual. I'm sick to death of people who claim that caregiving for and watching someone they love die slowly is a spiritual blessing. My wife died 11 years after the diagnosis of vascular dementia - the last 5 years in a nursing home, immobilized and unable to communicate. I juggled job and caregiving, fighting with doctors and then nursing home administrators over care and medication errors, sidelining my career and financial security to keep her home with me as long as possible, losing all but a few friends, ruining my health - while knowing all along how it had to end. And as the love of my life died in my arms after 11 years of suffering through feeling her mind and self slip away like smoke and her useless body twist into knots, there was nothing spiritual about it. Frustrating, maddening, saddening, hope-killing, gut wrenching - yes. Spare me your platitudes and self-satisfied homilies about spiritual journeys and renewal - that's a sick, egomaniacal con job for people who can't face the reality of life and death. I don't regret the sacrifices I made for my wife, and I made them from the love and respect and friendship I felt for her - not for some promised next life spiritual payback. Real people do the right thing in this world, not wait to do something right in the 'next'.