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Archive for the ‘End-of-Life’ Category

Thich Nhat Hanh, in 2001, wrote a book called Anger.  This is one of my favorite quotes:  If you can relieve a lot of his suffering.  Listen with only one purpose:  to allow the other person to express himself and find relief from his suffering.  Keep compassion alive during the whole time of listening.  Anger, TNH.

Okay, I have an awesome team of medical people helping me:  neurologist, PA, plenty of RNs and LPNs, LCSW, Psych, Biofeedback, PT, Acupuncturist, etc.  Most have been very sweet and kind to me during my stay to try to break up my migraine cycle.

But here’s the thing. . .  People come in and look at the computer screen and ask you how you are.  They ask a question but do not listen fully or mindfully.  Often times, one part of the team does not know what the other side is doing.  Showing up 5 minutes after I’ve woken up and having not even gotten to the bathroom, someone bubbly comes in and asks how my headache is.  Really?  Thich Nhat Hahn is right about people needing to share their story, their myth, etc so that they can free up the energy and emotions that keep them suffering.

I’m not knocking the staff.  Trust me, care here is way above just being cordial.  They are a great team.  It’s just sad that when you tell your doc that your advanced directives are done and you are my age, that he looks up with a question mark.  Hello?  I’m the one who has lived around dying, caregiving, and grief for 34 years and I know what I want and don’t want — my choice.  That’s why those of us in end-of-life care have worked tirelessly.  NO matter what age you are, you deserve to have the autonomy to chose; you have a right to decide how much suffering you are willing to put up with in situations like these.  Sorry, I get frustrated over end-of-life topics.  We need to start making all docs, nurses, etc take up communication classes and end-of-life classes.  It’s one smart.

But compassion and empathy are they places to start.  How do we teach those things?  Can they be taught?  Who is it in your life that affirms you and gives you their whole attention and mindfully listens to you with no corrections, advice, shaming, doubting, etc, I mean really just listens?  And who do you do that for?

Have you ever sat in and watched a class of children in the past 10 years?  Where I live, there is very little use of the word mindfulness and even when it is used, it is not what Thay, Salzburg, Brach, Pema Chodron, etc teach us.  Classes are too big and kids problems are too expansive.  Not enough time in the day for teachers to “fix” the kids in a classroom of 38, when they are teaching to the test.  Wow, what would happen if we gave kids 10 minutes a day to be listened to, heard, and empathetically listen to others?  I bet it would change an awful lot in this world.

 When we take turns compassionately listing and loving speech, we communicate with one another, not at one another.  It is there, in the space between the two communicating that true communication, true empathy, true love and grow!

(Aside, check out Thay’s books:  True Love, The Art of Communicating, Beginning Anew, Reconciliation, and the Miracle of Mindfulness.)

With Love and Gratitude,   Jenn

 

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Caregiving has always been a “thing” that my family did.  Growing up, my brother and parents helped take care of our land lady, Grandma Martin, who lived upstairs and had Melanoma.

In 8th grade/Freshman year in high school, I volunteered at The Jewish Home for the Elderly of Fairfield Co.

We took care of my grandfather after heart surgeries.  And there were a number of them.  Some cardiac surgeon probably built a gazebo with all of the stays my grandfather had at Yale.

1993-1995, we were caregivers to my dying brother.  Don’t try to be a caregiver if you don’t have support and a good massage therapist, yoga teacher, and awesome friends!

I’ve worked with people who have DD diagnosis, addicts, hospice, and general counseling.  Have helped my parents with food prep for their freezer or late night computer questions.  Weight Watchers leader, etc.  Have done that since Dec 2013.

Then sometimes, the tables are reversed; some times out of choice, some times because that’s the way the world turns….

I find myself as patient right now and will be again this Spring.  Hospitalized from uncontrolled migraines.  And this is the best thing I’ve ever done for myself, save completing my Advanced Directives.

But being on the other end of caregiving has been weird the past 2 1/4 days.  It’s weird to have folks kind of waiting on me.  It’s weird being pushed down the hall in a wheel chair rather than pushing (which is what I did when I hurt my back at the nursing home).  And I figured out in less that 24 hours, they gave me 102 oz of ice water to drink.  God, my Grandma (Gussy) would have loved all the ice water.

Anyway, the staff at St Joseph’s Hospital in Chicago, have been sooo awesome!  I cannot say that enough.  What a difference in caregiving from what I see every day, day in and day out at my workplace.  I had not planned to order dinner but at 5:30, I even had the cafe call and ask if I was planning to order.  How nice and dedicated to service this hospital is.  This is also the unit (floor) for the Diamond Headache Clinic and I always feel I get good care there too.

But, when I was wheeled down for an MRI, this tiny woman from Yugoslavia pushed me in the wheelchair.  She was well over 60 and I felt like a heel for them having her do it.  I was doped on Valium but could have pushed myself down there.  What went through my head was, you don’t deserve this, I am able and competent. . . yada, yada. . .

But I heard myself, as I talked to myself.  I was raised that the way you do good in this world, the reason you took this life, (or that the gods gave it to you) was to love others, be of service, and emulate your life like the great wise ones (well, as a catholic girl, that was Mary, Jesus, etc).  I have felt guilt for years if I wasn’t the one making things better.  But, as I read on the wall downstairs, we are here to give love to our neighbors and treat them well. . . not something being seen much in the media, social media, etc etc.

So here are some of the questions I am asking myself while I try to be mindful during my stay here:

What does caregiving mean to me?  Am I comfortable with the role of caregiver and care receiver?  If not, why?  Who have been the caregivers in my life and what was our relationship?  Who have I given care to?  Do I remember them all (as a professional who worked with HIV clients, I’ve had many patients die).  What gifts that I and my wards give each other?  What blessing did my caregivers grant me, if any?  If you are still currently a caregiver, do you use your support system, do you say no, how do you recharge your battery, how do you balance issues of intimacy?  Can you turn off your caregiving to be present at home?  What’s the most important part of caregiving for you?  What kind of care do you need.

In spirit… Jennifer

 

 

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This morning, I was reading a Facebook post by Robert Reich.  I had seen his commentaries on Facebook and in the last week, what I have seen has appeared normal, sane, and much more positive than a lot of other things out there.  So, I decided to “like” him on Facebook so I could read more things from him.

Just after this morning’s post, I know he is a man with a lot to say, both from his intellect and from his heart.  He described being with his 102 year old dad and feeling the need to hide our current state of affairs from him and I totally get that.  And I have a lot of respect for him wanting to shelter his dad from the enormity of just how crazy and scary our world is right now.

How many things his dad has lived through!  My grandfather would be 102 in Feb ’16 if he were still alive.  One of my dad’s cousins just posted that her dad would be 100 years old if he was alive too.  How to even imagine what it means to have lived for 100 years, let alone the last 100 years in the world.   I think back to when Mike died 20 years ago or even Lois dying 15 years ago.  It’s painful to search for people you loved (love) and find no trace of them on the net.  It’s like they didn’t exist.  You can find everything on the net, right?

Even as a child, I was curious about the fight between good and bad, light and dark, saviors and villains.  Maybe it was all the Catholic school teachings?  Maybe it was just from seeing movies, news, tv, etc.  Maybe those “inherent” dichotomies are just born into us?  I’m not sure.  But this is something I think of, time to time, when I let my world get quiet.  We’ve come so far in the treatment of HIV and AIDS.  And yet, where would we be if the US was not so slow to talk about it.  Thank goodness for Rock Hudson and Reagan having HIV sitting in his living room.

On one hand, we have fewer and fewer people acknowledging any religious tradition and many of us do not turn to Judeo-Christian religions for our ethics and morals, or our solace when nothing makes sense.  But we do have people who have made it their spiritual journey to fight for the planet, those less fortunate, those with particular illnesses, and I think that should be commended.

We don’t have to kneel in the pews to praise the glory of the dawn or the expanses of the universe or hold intentions that the hate in the world will one day dissipate.  We have more kids, young kids, trying to solve the problems in the world — the kid who wants to clean the plastic out of the oceans, a 10 year old who sings to the elderly, a 13 year old that sends teddy bears to kids in Haiti after the earthquake, etc, etc.  Maybe listening to our children makes more sense than to listen to the vile hate and evil on the tv and internet today.  You know, the reports of cities make it illegal to feed a homeless person or setting up metal spikes to keep them from holding up outside of buildings.  Or those who spew hate about a particular religion or people. . .

I try to stay away from the news, and try to focus on my world and try to figure out how to break the confines of hate, gossip, treachery, and ill will.  I try to work with those things within my own heart and mind because if I can’t how do I expect anyone else to?  If I can’t what makes me think anyone else will take on that huge task, especially alone like I currently am.

But folks, it’s not a time to give up easily or to flirt with things like spirituality, rightness, goodness, kindness, advocacy, community, etc.  I think we need to take a stand.  Hundreds of people took a stand during WWII.  And I mention WWII because I am a bit of an amateur historian when it comes to the segregation, hostility, brain washing, mass evil that has come to be a part of the history of that time.  And though the world said, let we not forget, I think we have forgotten in the gravest ways.  Where has this rise in antisemitism taken off like a wild fire?  How long have we allowed China to create its own Holocaust within Tibet?  Why do we stand for the mass extinction of our lands, our world that feeds us and can help us to stay whole and healthy?  When does the side of good rise up and do something about all the dangers?

I honestly don’t know what I would do if I were Prof Reich.  I applaud his love and need to protect his dad.  And I bet his father has a world of wisdom to share with us after living for so long.  I hope as a scholar, not a son, the professor has archived his father’s thoughts, ideas, and wisdom.  Heck, I know I want to archive the silly little songs my dad has sung to me while I was growing up or the feel of a hug from him or mom, or to learn every one of mom’s recipes by heart, to have something of her close to me.

I have to admit, I long for the 1980s, yes, beyond just the music (Depeche Mode forever).  I was in my teens, I had two hart working parents and a pain in the neck older brother.  I still had grandparents.  I still lived in the places I had always known.  I had friends, had created friendships, that would still be with me today.  I learned how to be charitable with my time whether it was hanging out on a Friday night to give drunk kids rides or it was going to The Jewish Home for the Elderly of Fairfield and giving love to wise old lonely people when I could get their after school.  Whatever was going on in the world, I think we were sheltered, or at least I was.  I didn’t even realize the person who slept in the bedroom next to mine had HIV.  It was still a time of innocence for me.

And may in our old age, we want to recreate an age of innocence for those older adults that we love.  We want them not to fear the world since aging and dying can be such big fears.  Maybe we want to create a time, like after birth, when the baby is so loved and we are so mindful of their every accomplishment and every beautiful breath?  Wouldn’t it be lovely to have friends make quilts and blankets, and stop by with flowers, or pick up prescriptions, or just to send a not of love?

I am so honored that Prof Reich shared such a deep a meaningful situation from his own life with us.  We are so much stronger, so much more human, when we can be ourselves and share who we are from the heart.  This is the kind of person who I want to know more about. . . his father too.  These are the people who have integrity and want to see good come from this little experiment on this planet that we all signed up for. . .life.

The battle between good and evil will always be there, as long as humans are there.  I pray with every person who takes up a microphone to speak out against Muslims, or people of color, or the President, that there are just as many people encouraging our brave kids to do better to help the world.  I hope there are more people learning yoga and sitting on their zafu.  I hope there are more people who rise to see the sun return to us as they sit and are thankful for the grace in this world.  And I hope there are just as many in the wee hours of the night, finishing school programs, writing songs, praying for world peace, and looking into their own hearts.  I add enough anger, frustration, lack of caring into the world and I need to recommit myself to being that young girl who saw the beauty and awe leaving early for school just to be closer to the Divine.  I need to remember who I am which is an advocate, an educator, and hopefully a person to planet peace in the darkest places.

Prof Reich, wherever you are, I wish you love and peace as you spend time with your dad.  I hope you feel the strength, power, and wisdom of your community as you enjoy each moment with him.  And, probably most importantly, I hope you feel my gratitude for you being genuine and sharing the bittersweetness in want to protect your dad.

Namaste!

May the merit of all our good flow into the universe a thousand-fold.

May the love we feel for those close to us also reach those people who feel unlovable.

May those we love never doubt that we love them with our whole existence and we would not betray the sacredness of them or our relationship to them.

May the merit of every word, every song, every syllable, every breath keep hope alive that there is a different way and we can find a peaceful existence in this threatening world.

Metta, now and always,

Jennifer

 

 

 

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In his book, Peace Begins Here, Thich Nhat Hanh writes:  “Despair is the worst thing that can happen to us.”  He was a young monk during the war in Vietnam and he knew that those around him were suffering and feeling like no hope was in sight; maybe hope wasn’t even possible.  After being silent for quite awhile, Thay said to those around him:  “Dear Friends, the Buddha said everything is impermanent.  The war has to end one day.”  He felt this was important for people to hear at that moment.  He hoped that they realized there were things for them to do to life themselves out of the despair, once they realized that that’s where they were.

And as I was reading, I thought these were important words to live by, for me, here and now, both on the global level and the individual level.  Right now, I am facing a difficult situation, a bit of a crossroads and don’t know which way to go and since I am not clear, I find that I can get trapped right where I am, stagnant, fretting, wondering, conjecturing, etc.  And what does that do but wake up me up at 3am.  It saps my energy, makes me cranky, increases my stress, I have more pain on more days, and shut down and off, alienating myself from the few people right around me that care.

Isn’t that how I, and much of the world, feels right now about the situation with our planet melting, children going hungry, the rich getting richer, it being illegal to feed a homeless person, people being killed because they show up to help people at the job at Planned Parenthood and are being killed, etc.  Or they go to a movie, a game, a holiday party a restaurant and are being bombed.  We are paralyzed by fear and smoldering anger that we don’t know what to do with, that we cannot fathom there is anything that we can do with that intense level of emotion.  We get stuck, we stew, we head to Facebook or Twitter and rip into someone or some idea.  We get barely a second of satisfaction but it’s hallow and it doesn’t last.  All it does is exercise our anger muscles, making them stronger.  Sounds like my life is a mere echo of what so many in the world are feeling today.

But in his book, Thay goes on to say,  “It is very important to find out what we can do every day so that we don’t drown in an ocean of despair.”  He explains further that there are Israelis who do not agree with their government and speak out and they need to be supported.  At the same time, there are Israelis who refuse to go to war because they know it is wrong.  Does that change the pain and suffering of the Palestinians?  Yes and no.  Does it solve the bigger picture or end the war, hate, and deaths?  No.  There is no simple answers or remedies to that.  Does it help to know that there are people on both sides who want peace and do not want to see one more generation of people killed?  Yes.  It helps to give you a bigger perspective, to move from fear and anger into feelings of unity, cooperation, and hope.

We can’t always wait for sweeping gestures or one final solution to a conflict, global or not.  Some times it is the simple smile or acknowledgement by a stranger that can snap us into a different frame of mind.  We move ourselves from the perspective of being stuck, overwhelmed, and seeing no way out to having some sort of options.  Or we know someone else out there feels similar about a situation.  It’s a sliver of light in a dark universe.  It’s the seed of change being watered and cared for until it becomes a seedling.

In my own situation, it does me no good to sit and brood about my problems or to wallow in the Poor Mes.  I’ve done it, sat in it and it’s time to change that diaper.  So I do not have the power to change my ultimate outcome but I can change my perspective on the path from here to there.  I can educate myself, talk to others, do something for others, reach out, ask for help, sit with the painful feelings and fear and work to accept that right now, that’s where I am at.  I can blog, meditate, visualize, ask questions, listen, inject humor.  And like in Logotherapy, I can think of and feel the most outrageous thing associated with my situation, the things I fear the most, deep down within my cells, and see the absurdity or anxiety which stems from those fears.  Then I am able to move through feeling paralyzed to action, advocacy, helping others, etc.

Everything in life is impermanent. . .  this election cycle, global warming, all of the hatred for people who are “the other”.  Our health, our age, our relationships, our grief, our illness, our vocation, our material things. . .  none of them last in this existence, in the same way, unchanging forever.  That takes some of the pressure off.  It lifts us out of option reduction and narrow thinking to realize that things will change when we take a minute (or longer).  I think despair is even more deadly, darker, more stuck than hate or anger.  I think that despair can be the quagmire that some cannot turn back from.

So here are my questions to you (and to myself):  where are you, here and now, in your ideas, feelings, perceptions, relationships, grief, boredom, etc?  Where are the areas of your life that you cannot imagine ever changing, ever being better, ever being worse?  What is it like for you to be with that?  If you sit with the idea and feeling that something in your life that matters, good or bad, will not last, will be gone, what comes up for you?  What arises when you think of your health disappearing?  Your youth?  The love of your life?  Your enemy?  What are the things that bring up loss in your heart?  Can you let them light in your heart?

One of the most amazingly healing things that I have ever done, and I know I have written about it before, is the tapes/cds, by Stephen and Andrea Levine, The Heart of Grief.  They describe the huge painful losses and griefs, the small daily ones, the ones we don’t think we want to live after, the ones that make us or break us.  Its a good program to listen to when you want to meditate on impermanent.  There are also meditations that you can do, such as ones on end-of-life. . . but start off small.  Don’t take on the huge issues, especially without support.  Find a mediation buddy or teacher or sangha or therapist.  And if you never heed these words about anything else in life, heed them on your journey. . . take gentle care of yourself.

In light and hope,

Jennifer

 

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All of us will die sooner or later

Ironically, my first night of sitting in contemplative silence, meditating on this assertion, All of us will die sooner or later, with what feels like the start of the flu.

We have a fragile, impermanent existence. . . and illness, pain, aging all are like mindfulness bells ringing to remind us to be present here and now because we have nothing more than the present moment!

I got on my cushion in the evening and tried to get comfortable.  I was wrapped up in a blanket to keep warm.  I keep my apartment on the cold side because I find it helps with things like inflammation and pain.

I chuckled to myself that my hands were as cold as a corpse, so maybe that was a good sign for sitting with this true reality of impermanence.  And I sat with my skull mala in my hands, hoping that would ground me to the experience.

All of us will die sooner or later. . .

I’ve often wondered, out loud and to myself, if in our bliss to find our life partners, we stopped to ponder that one day one of us would die and the survivor would be left to mourn, how many of us would really go through the pain of love?  Could we even ponder this every day of a relationship and still be able to be loving?

Like someone once said, I’m not afraid of death, I just don’t want to be present to my dying.  I have to imagine that most people have a hard time thinking of their loved one dying.  It’s not a pleasant thought and it certainly feels like a lonely thought.

All of us will die sooner or later. . .

I’ve done the Nine Contemplations as a meditation series for myself before this time.  I’m always amazed at the richness that comes with it, however, when I am sick and doing the meditations.

It’s one thing to say you have an awareness of aging and dying. . . it’s another thing when your breathing is labored and you don’t have the energy to get yourself out of bed for a glass of water or juice.

My cold hands clutched the skull mala that I own.  I use it when I do meditations on dying.  As the turquoise carved skulls go between my fingers and as my back gets a little achy from trying to hold it upright while sitting on the cushion (when all I want to do is be in bed), I think to myself. . . I wonder what’s really the harder thing to do . . . living or dying. . .

All of us will die sooner or later. . .

there is no getting around it.

there is no hiding from it.

From our literature to our movies, we are constantly reminded that we will say goodbye. . .

not in a sappy love song sort of way though. . .

but in an unraveling of the spirit from the mortal flesh. . .

a pulling away of light from our neurotic grasping. . .

a severing the deep ties to all that we are attached to in this life as we re-enter the world of no-thing-ness.

All of us will die sooner or later.

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To acknowledge that you are dying is to recognize that you are alive.

~~ Dean Rolston, Memento Mori: Notes on Buddhism and AIDS

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I had someone leave me a question on the Ask Here tab of the website.

The person who wrote shared the story of having a friend that they loved very much who died very quickly after a cancer diagnosis.  Priscilla, the writer, wants to know if it is normal that she still misses her friend and has periods of actively grieving.  She wonders what might be wrong since other friends don’t seem like they are still hurting.  And she wanted to know if there was something that she could do…

Priscilla,

Thanks for leaving me a question.  It sounds like your loss was really unexpected and you had little time to come to terms with your friend’s diagnosis and death.

I used to hear the debate in my grief groups, as I would be walking into the group room from locking the front door… which is worse, a sudden death and the loss that accompanies it or the slow declining death of someone and that loss?

Honestly, loss is loss and it hurts to the very depth of our soul.  We will react to different losses in different ways but being bereft, although the second thing that we all have in common, is still one of our most painful and life altering experiences.

A lot of people in our society think that there is some set amount of time that a person has to grieve.  Apparently businesses think three days away from work is plenty of time to get funeral arrangements made, cope with the loss, and come back to work with a stiff upper lip.

Many in the field of grief will tell you that 6-12 months and you should be spending more time in the “living” process than in the world of grief.

What I can tell you is what I have experienced and what I have been honored to witness in clients, friends, and family. . .

Grief takes as long as it does.  Depending on your relationship, that whole in your heart my be painful until the day you die.

Grief takes on different characteristics over time, sometimes feeling like a stabbing pain, sometimes like a dull headache, sometimes like the darkest hours before dawn, and sometimes the murky twilight when nothing seems real.

And it’s okay that you are still grieving for your friend two years later.  For some of us, friends are the family that we’ve gotten to choose.. we’ve brought them into our lives and our hearts and they have a special meaning that no one can replace.

Have some compassion for yourself for having loved someone so deeply.  Isn’t that what loss is?  Our learning to live without someone being here to hug, call, laugh with, sit and be silly with?

For me, the first year after my brother’s death was painful.  Six months after he died, I went away to graduate school, still stunned and in a fog from two years of caregiving with my parents.

But it was in the second year, when we were sitting in my little basement apartment, away from our family and friends at the holidays that I felt like my heart was ripped out.

We were together, my parents and I… but I was longing to think .. is this going to be his last holiday?  What’s life going to be like without him.. as I had thought for several years…

I longed to feel that kind of pain though I would not have wanted him back in the agony that his life was.

When I went to work for hospice, 7 years after his death, I struggled.  I finally had a community around me, people that I trusted with my grief and pain, and it was a tough anniversary to go through… it was also a few months after my friend and mentor died as well and there was no way that those two losses were not interconnected in a variety of ways in my heart.

The point is that we change, evolve, and grow with time.  Our grief changes during that time too.

With every year that passes, there is more and more certainty that it’s not a dream and we can’t just wish things to be different.

As we find healing in one area, we find that we have the ability to take on a new painful part of the grief and work on healing that.  This new pain may have been there since the loss but we have a way of prioritizing what we can and cannot handle, mostly on an unconscious level.

So, not that you asked for advice per se, but what I would like to offer is:

Take time to touch that gentle tender point in the center of your chest that might be aching for your friend.

Acknowledge the pain as it comes up

Love that he/she meant that much that you still hurt

Find comfort in your memories

Allow what is to be and don’t push away the pain.

And don’t let anyone tell you that you’ve been grieving too long.

If you are able to get out of bed, take care of your kids, go to work, make sure that you are eating, etc than just be gentle with yourself.

If you are finding that you are having a really difficult time dealing with day-to-day things, then see if your local hospice has a support group or counselor.

If you feel like harming yourself, get in to see a doctor.

Most of us will not have the last two experiences, but if you are, know that there is help.

Shame and guilt only make our grief worse so if possible, make a point to acknowledge that grief hurts and you are okay for hurting.

Love takes a time to build.  And loss takes a lifetime to heal from.  Know that you are forever changed by the experience of having had this friend in your life and having lost them.

Be gentle with yourself Priscilla, allow yourself to grieve as the thoughts, feelings, and sensations associated with the grief arise.

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