Frank Ostaseski of the Metta Institute and the Zen Hospice Project speaks about the questions and issues that arise when we find ourselves needing to care for ill or dying loved ones.
Just click this player to listen to the second installment of our Shambhala Sun Audio talk with Frank:
From today (July 6) through July 9, Frank will be taking your questions about caregiving and practicing with illness and dying, via our online commenting system. Just leave your question as a comment on this post.
To hear the first installment of our talk with Frank, click here.
Dear Frank,
Thank you from the bottom of my heart for the Metta teachings which continue to support and inform my day-to-day practice as a hospice social worker. I am curious about your thoughts about working with people who strongly believe that speaking or acknowledging that dying and death are imminent (at least in the doctor's best guess: ' within the next six months') is wrong! That such an acknowledgement means that the dying person has "given up" and is, in fact, "inviting death into the room". I struggle with 'how to join with" persons who hold such beliefs, be these beliefs be founded in spiritual or cultural frameworks. I am so happy we are able to have this discussion. Sandra Lee
Hi Sandra,
The dying room is a place of paradox. In the tension and urgency that surrounds dying we are tempted to pick sides. To choose one belief over another. But if we can just relax a bit and hold the “tension of opposites” we will frequently observe a third option emerging. One that we might not have considered or even imagined.
In my experience everyone in the dying room is suffering at some level….the person in the bed and those surrounding the bed. When I recognize this truth my innate compassion emerges and guides me toward an appropriate response. We don’t alleviate peoples fear by persuading with a new idea. So we must listen and listen again.
Often I will find that a friend, family member or a healthcare provider is trying to “protect” the person dying though the best strategy they know. That might include avoidance, beliefs, spiritual concepts etc. When I listen and perhaps explore the caregivers desire to protect I sometimes find the caregivers own fear and denial. But if I really listen carefully without judgment I will very often uncover their love for the person dying. Love opens the dialogue….it relaxes the contracted places and opens the possibility of embracing even those experiences we most want to avoid.
When love is really present we don’t want to waste a moment. We tell the people we love that we love them. We want to be with them in a real and honest way that honors both the difficulty and the beauty in what is occurring.
No guarantees that it will always turn out this way. But it sure beats wasting time having a battle of beliefs.
Caring for people who are ill or dying can be an intense, intimate, and deeply alive experience. It often challenges our most basic beliefs. It's a journey of continuous discovery, requiring courage and flexibility. We learn to open, take risks, and forgive constantly. Taken as a practice of awareness, it can reveal both our deep clinging and our capacity to embrace another person's suffering as our own.
This online forum is open to all and may be of particular interest to professionals or those who anticipate caring for family members or friends facing life-threatening illness.
Lets have a discussion in which the unknown will be as important as the known. A conversation that helps us bring body, heart, mind and spirit to the service of others.
Please join me
Ah, Frank,
That's it! To find the love and hold the space for it to manifest…in whatever form, whatever shape that takes 'in the world of ten thousand things'. I forget to do this in the chaos and drama of 'what I should be DOING as the social worker'. Again and again to remember to return to the breath and release into the moment. Thank you for the remembrance. Sandy
Dear Frank, It is always good to hear your voice…and thanks for your teachings here. I am wondering if you have any pearls of wisdom to share about the issue of hope and our concerns as caregivers that we can somehow take this away from those we serve when we share prognosis with them… I am going to be speaking a bit about this in a few weeks, mostly to physicians, as part of a talk on Truth Telling and Hope. Thanks in advance…blessing to you from Michigan !!! Meredith Bradley
Hi Frank,
I'm a paramedic working in a emergency room and I see death in seconds smacking me in my face telling me to wake up. And I get it at that moment just how valuable life is,and it just smoothers you,the realness of it all.
However and this is hard to say,that when I'm home and I'm taken care of my parents who are both ill,mom had a stroke 2 years ago and is bed ridden not able to speak or control her bladder or bowel movements and dad who had his stroke just weeks ago and has difficulties with walking and swallowing.I find myself fusterated and angry and at times lost at how to really connect with what is before me in a real way without being on automatic and being "clinical" with there care and not in just a physical sense but to be able to really get closer to the humanist that I feel is missing.
Yes alot of baggage from the past creates boundries and how to remove them is part of the challenge. Advice and insight would be helpful.
thank you,
Rick
Hi Rick,
Anybody who is a caregiver that is willing to speak the truth will tell you it is a totally different ballgame when we are caring for family. It’s just so much more complex. All the family dynamics, the habitual ways of interacting, the confusion around roles. It’s really hard.
My first response is mercy, mercy, mercy. At times like this… when we most need our kindness we often club ourselves with self-judgment. Please be kind to yourself, very kind. That is most important now.
Caring for those we love will challenge our most basic beliefs. Ask us to push pass fatigue, cause us to face unimaginable doubt. Restlessness will rule at times. You will question your ability and motivation. Your own deep clingings, aversions and habitual patterns will present themselves for review.
Helplessness and insecurity will be common companions. Above all you will face loss and confront the fragility of your own life.
It can break your heart open. But perhaps its here in the open heart that we will discover what actually helps.
It takes courage and flexibility. In one moment we will say or do the right thing that may be the absolutely wrong in the next. We find a balance. This is a mystery we need to live. Opening, risking, forgiving constantly.
You are doing what will probably be one of the most difficult things of your life. It's sure to challenge you on multiple fronts. Please remember that compassion starts with ourselves.
I find my entrenched patterns loosen when I am willing to acknowledge how caught I feel.
Once I was caring for someone I loved and I got into a complete tangle in my mind while moving him from the toilet to the bath. Me “Mr.. Hospice”. I stopped right in the middle of the action and just acknowledged how helpless I felt. I remember just sitting there crying beside the toilet.
Turned out the other person was also feeling pretty helpless. So helplessness became our meeting place. There we were helpless together…not so much separation. Of course we didn’t stay helpless forever. The situation showed us what to do next. But I couldn’t see that from where I had been standing.
To be people who heal we have to bring our passion and our fear to the bedside. We need to draw on our strength and helplessness … on our wounds and joys to discover a meeting place with the other. We have to invite it all in. It is the exploration of our own suffering that enables us to form an empathetic bridge to the other person.
I also vote (if possible) for getting some help from others….this is too tough to do alone.
This is a great discussion. Thanks, Frank. I'd just like to recommend two pieces the Sun has published that will interest those concerned with death and the time of dying. They're both by John Tarrant. One is his story of experiencing the mind of no preferences while his mother was in hospital (it's in the Sun archives at http://www.shambhalasun.com/index.php?option=com_… in our archives) and the other is his story 5 Reasons to Get Cancer, on his own experience of prostate cancer. It's is not in our archives but can be read on John's site at http://www.pacificzen.org/pages/PopUpInfo/JT%20Re… We've published a lot of great stuff on death and dying–it is, after all, the Buddhist speciality–but I think these are two of the best.
Hi Melvin
Thanks for the great references and links. Just saw John yesterday. What an alive teacher. He speaks and writes beautifully from his personal experience.
Hi Frank,
I think I'm about to become a caregiver and I'm terrified of losing my freedom, my life and my sanity… and I also feel so very selfish for thinking this way.
A 90 year old family friend, who has no biological family close by, is detioriating very steadily but slowly with a multitude of respiratory conditions and general increasing fraility and loss of sight which all came together recently leading to a fall and a broken right arm. She is fiercely independent and therefore lives alone in a lovely but now crumbling house with an ancient dog that is the center of her world. She refuses to consider live-in care and refuses to consider moving into an assisted living arrangement which would mean moving back to the US and probably leaving the dog.
I have house sat for her for years and lived there for brief times when she has been ill in the past, at the moment I see her once a week (twice now with the broken arm) to help her with her bills and do errands and speak to her every other day – my mother speaks to her every day. Someone stays there at night and various people – housekeeping etc. – pass through during the week. It is nowhere near enough, she is terrified of being alone and everyone that knows her feels the same way. The last time I was there she went on and on about how helpless she feels and how horrible it is and how I'm the only one that makes her feel better because I don't fuss… eek!
I don't know if I can really do this and what it would all entail, my partner and I are just about to start building a house, I teach yoga and work in the non-profit sector and already feel like I'm stretched by other people's demands… When I'm with her it's fine and happy sometimes but sometimes I feel so frustrated… she can be very demanding and particular about things and very harsh towards other people which makes me uncomfortable. The reason she thinks I don't fuss is probably just because I don't want to get into an argument with her so I just stay pretty quiet and make jokes periodically while trying my best to do whatever she wants but I really don't know if I could do that full time!
I'm sorry to go on and on here, not sure if this is the forum for it and not sure anymore what my specific question is – I guess any advice would just be kind of helpful – I'm trying to sort out the options in my head this week-end because something has to be done… I just don't know what the right thing to do is.
Hi T.C.
Sorry I was away and offline for a few days.
By your description… I would encourage you to be very careful about over committing yourself. It won't be helpful to your friend if you become exhausted, resentful or unable to care for her needs.
Often people don't want to consider alternatives….like other residential options. Frequently this is driven by a set of unexplored beliefs or fears about "being put away". However, the truth is not everyone has all the resources and support they need to stay at home. And there are good residential options out here.
Be realistic about what you can gracefully offer…and be satisfied with that. Then have a honest conversation with your friend about what other sorts of support she may require that you cannot provide. Your local hospice may be able to offer some guidance. Being a good friend doesn't mean you have to take everything on your shoulders. You may be far more helpful by identifying and sorting out local community services that could be of assistance
When people would come to our hospice family members often felt guilty for not keeping their loved one at home. I would say, "….let's us do the laundry and make her meals and attend to her medical needs. Then you be free to give her what only you can offer ….your love."
Hi T.C.
Sorry I was away and offline for a few days.
By your description… I would encourage you to be very careful about over committing yourself. It won't be helpful to your friend if you become exhausted, resentful or unable to care for her needs.
Often people don't want to consider alternatives….like other residential options. Frequently this is driven by a set of unexplored beliefs or fears about "being put away". However, the truth is not everyone has all the resources and support they need to stay at home. And there are good residential options out here.
Be realistic about what you can gracefully offer…and be satisfied with that. Then have a honest conversation with your friend about what other sorts of support she may require that you cannot provide. Your local hospice may be able to offer some guidance. Being a good friend doesn't mean you have to take everything on your shoulders. You may be far more helpful by identifying and sorting out local community services that could be of assistance
When people would come to our hospice, family members often felt guilty for not keeping their loved one at home. I would say, "….let us do the laundry and make her meals and attend to her medical needs. Then you be free to give her what only you can offer ….your love."