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Marilyn&Me1My dear friend may have just been given a treasured gift or the worst nightmare of her life – depending on her attitude.   She received the kind of news that none of us ever wants to hear.  The majority of us approach each day with a nonchalant assumption that we have infinite tomorrows.  And she’s certainly no different in that she gets to live her life and someday die.  Marilyn2The difference between her life and mine is that her lifespan now has a calendar attached while I still exist in blissful ignorance of my last day.  Though she doesn’t really know either, she is aware of medical statistics that place the odds of living a long, healthy life in my favor and not hers.

Marilyn has metastatic pancreatic cancer that’s now in her liver too.  With a cocktail of chemotherapy drugs doctors might be able to keep the cancer in check for months, possibly years if she joins the small percentage of people who do.  And time will tell, assuming her tolerance to the drugs goes “reasonably well” (doctor parlance for “manageable side effects”).

While the clock is ticking Marilyn can live each day to its fullest, prioritizing her life in a way that few of us ever do.   I’ve put myself in Marilyn’s shoes, hypothetically, and here are the questions I’m asking myself …

Am I living my life the way I want to?  If not, what do I need to change?

            Who are the important people in my life I need to spend time with?

            Who are the people I need to forgive or ask for their forgiveness?

            What do I obsess about that I need to shed?

            Is there a dream I need to pursue before time is gone?

            Are there places on earth I’ve always wanted to visit?

            What is truly important to me?

            What do I need to stop doing?

What should I start doing?

            How often to I appreciate the specialness of each mundane day?

Where do I find joy?

Marilyn:BobAnswering those questions can be gifts to all of us, including Marilyn.  The key, then, is to change our lives accordingly, if necessary, so we can truly live out our days and not sleep walk through them.  Those of us who live in mystery of the end rarely take time to appreciate the daily spoils of life.

Meanwhile, my answers to those questions are still percolating around my system.  But I’m grateful for the wake-up call and send Marilyn ongoing wishes for healing while she processes those questions too.

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christmas 2007

christmas 2007 (Photo credit: paparutzi)

The small condo is loaded to capacity with family members who live scattered down the south-east coast but are now reunited for Christmas.  Their presents are stacked under the tree in an arc that protrudes well into the traffic lane between the living and dining rooms.  There’s no choice but to pass single file around the mound or to step carefully above the lowest packages stacked.  And there is a lot of movement between the two rooms seeing that the food is in one and the TV and seating in the other.

In the crowd are twin babies whose smallest moves transfixes all eyes on them.  There is lots of ahhing and oohing over the infants by relatives who are either meeting them for the first time or have waited weeks for the special occasion.  The family has waited a long time for these babies to be born and they are most definitely the stars of the show.

SantaHatMy husband and I were invited to share the celebration because this family’s patriarch is caregiver to my hospice patient.  I call her my patient because I volunteer my time in her home.  But  I’m not a medical person and she and I have no relationship and have never shared a conversation.  Her brain has been ravaged by Alzheimer’s and her basic functions of breathing, eating and sleeping is what defines her aliveness these days.  She’s confined to a bed and is even blind now.  Nobody knows how much or how little she understands of her world and her family.  She’s been living like this for years, sustained mostly by her husband and through visits by various hospice professionals.  My role is to give her husband time out of the house to do as he pleases.  And we’ve maintained this routine for close to two years.   My relationship is with the husband who, for me, embodies the meaning of “noble” and who ranks close to the top of my “most admired” list of people.

Almost a decade ago his wife received her lethal diagnosis.  He promised to care for her for the rest of her life and never waivers a moment on that pledge even though it renders him housebound  until someone can relieve his vigil for a few precious hours.  He’s lived like this for years and there’s no forecast of how much longer this lifestyle will continue.  He and I visit once a week but the effects of his selflessness lingers with me.

PartyHatChristmasToday he’s decided to have her join the party.  After-all she’s a mother, grandmother and great-grandmother to everyone gathered.  He didn’t like the idea of her languishing in bed while everyone was carrying on.  So into the wheelchair she is placed (with great effort) and rolled into the living room where all the action is taking place.  Her husband plops into the chair next to her, and with his arm around her shoulder, tells her everyone who’s there. He feeds her.  He opens presents for her.  “Shows” them to her.  Tells her how pretty everything is.  And each daughter and grand-daughter come to hug and kiss her, wishing her a Merry Christmas.  One of them brings the babies and touches their fingers to her arms to say hi.  She hadn’t met them, in fact nobody knows if she understood that her grandson’s wife had given birth.  But none of that matters.  They talk to her as though she’s still a vibrant member of the family and its matriarch.

Such love and devotion with nothing given in return.  I’ve never heard the word “burden” uttered.  And there’s nothing about their actions that remotely hints that.

Merry Christmas to that family.  May those among us who are healthy realize it and be grateful for it.

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It’s a good thing I voted early, otherwise I’d be hobbling into the polling station with a very stiff and cranky lower back.  It’s much wiser and safer to be nursing it with some ibuprofen and a heating pad with hopes that it feels better tomorrow.

No barn duty today either although it’s my morning to help with the horses at the Rescue.  Tuesdays come quickly and they’re usually greeted with a healthy back and ambitious attitude to feed, turn out and clean stalls. That’s actually what may have aggravated my back last week during some pretty heavy lifting in some very dirty stalls.

My back has been in great shape for years, thanks to regular exercise and yoga.  But with the cooler weather here and maybe a case of nerves leading up to the election, my back has decided to take control out of my hands and leave it up to fate.

Our bodies have a way of letting us know when it’s time to let go.  To let go of controlling things over which we have no control.

Lesson of the day and I’m listening.  Finally.  It’s our jobs to discern which things we can control, and the wisdom to let go of the others.

What is control, anyway? 

Is it the need to fulfill our expectations? 

To have our lives unfold according to our plans? 

To be right?  

To continue our personal delusions?  

To assume we know best? 

Yes, I think so.

Being a Type A personality, (actually, I like to call myself a recovering Type A), I’ve always needed to control my destiny.  My career put me in constant touch with news and pop culture and my leadership roles allowed me to be the gatekeeper I needed to be.  I had influence over content, budgets, direction, staffs and the masses.

Perfect. 

As my bank account grew with my advancements, so did my sense of personal freedom.  Money has always meant freedom to me, rather than the acquisition of “stuff,” though I accrued that too.  And with that freedom came a sense of control over my destiny.  Oops, there’s that word control again.

If you think my childhood had anything to do with that, you’d be right.  But that’s another subject.  (Or, if you know anything about the Enneagram model, and my type number, you might also realize control issues are in line with that too.)

Anyway, I digress.  Back to control…

These days the issue of control is one that I’m working to live without.  I’ve consciously started to live my life without assuming leadership functions.  Passion may describe a defining personal attribute, but that doesn’t have to lead to controlling an outcome.  A Buddhist tenet is to do what you must and let go of the outcome.  To not be so attached to the activity and its motivation, but, rather to do what’s right and give the rest up to the wind.  What will be, will be.  I’ve done my part, now let it go.

That’s what I think my back has been telling me for a few days now.  I’ve voted, I’ve been an activist for principles that guide me.  Now, just relax and let it be what it will be.

Thank you, back.

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We say yes, he insists no.  What’s a child to do?

Right now my 89 year old father is in a rehab unit hoping to re-gain the strength of his body.  His legs don’t work that well anymore, particularly his left leg that’s grown weaker in the 20 years following his stroke.  The same is true of his arms; the right does the lion’s share of work while the left hangs limp at his side.  He desperately wants to return home where he was about a month ago before this current crisis took place.  There he was able to move ever so slowly using his walker and also to perform the daily rituals of living.  Now he can’t get in or out of bed by himself, bathing and dressing himself is impossible and he requires the help of an aid to move even more slowly and unsteadily in his walker for yet shorter distances than before.  And yet he’s convinced himself that he’ll get strong enough to go home and continue life as before.  It doesn’t look promising, though he is improving.

The food there is good; we’ve tasted a bit of all his meals as they’re delivered.  He’s receiving excellent care, has a private room and is in a very cheerful, bright community of people with a similar cultural background as his.  He’s been accepted into their long term care household which is where we want him to live.  He refuses, complaining about the regimented lifestyle and business-like attitude of some of the nurses and aids.  They have schedules to adhere to regardless of whether he agrees.  He likens it to life in the military some 70 years ago and says he wouldn’t wish it on his worst enemy.

We’re in a stalemate.  Once his physical therapy is finished we’ll have to make a decision.  What do we use as our guide?  Our judgement, as his children, about what’s best for him?  Or his emotional insistence on the way he wants to live out the rest of his life?

Based on history, we think that if he goes home he’ll “fire” the aids after a short period of time because he thinks they’re no longer necessary.  It’s happened before.  He hates spending the money; he considers it wasteful.  He wants to die with his money intact “just in case.”  “Just in case” what?  we probe.  “I don’t know” is the answer.  He can’t grasp the idea that NOW is the” just in case” he’s been saving for.

Life at home consists of sitting solitary in a room and watching TV all day.  His only company is my sister when she returns from work and my other sister when she visits.  On many Thursdays he hobbles to his car and drives to meet his buddies for lunch at the nearby deli.  He shouldn’t, but he does.  I doubt he’ll be cleared by a doctor to continue driving.  He’s convinced we’re wrong.  He must keep his car.

When I was a kid I went to hebrew school and took piano lessons because my parents insisted they were beneficial.  I disagreed.  It didn’t matter.  I went and I practiced — for years.  And years.  And years.  Now, as an adult, I’m a richer person for the experiences.

He doesn’t see the analogy.  He sees himself as the parent who knows best.  We disagree.  Who wins?  And at what cost?

What do you say?  What would you do?

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She lies in bed with her feet curled under the sheets, hands gripped in tight fists wrapped around small stuffed bears to prevent her nails from stabbing her palms. She stares into space, now completely blind, with a blank expression.  Her past-time these days is to curl her tongue around her mouth, stick it out and start over again.  She sips water through a straw, is fed baby food with a spoon and her hygiene needs are attended to by others.  She has end-stage Alzheimer’s Disease and as it progresses, she regresses deeper into infancy.  

Amazing how this woman is ending up where she began.  And, as far as doctors know, she’s unaware of the changes in her life.  Eventually her brain will stop remembering how to swallow.

Alzheimer’s Disease is a tragic way to die.  This woman’s progression is now 8 years into diagnosis with her family responsible for her care.  Their lives are on hold and her husband has essentially devoted his to her, rendering him housebound with occasional relief days to steal a few hours out of the house.

“Hi baby” he coos to her when he returns home.  

“How are you?  

Did you have a nap?  

Are you thirsty baby?”  

Blank stare into space.  Tongue rolls around in mouth.  Evidently that response triggers him to reach for the water-glass to give her a quick swig.  And “quick” is the operative word here.  Her sucking impulse is strong and she’s likely to gulp down more than she can process.  A couple coughing and gasping spells is all that’s necessary before that lesson sinks in.

It’s a lonely life relegated to Alzheimer’s families.  They suffer the disease more harshly than the patient because they watch the deterioration of a human being who used to be a vital member of the family.

There is no substitute for the love of an Alzheimer’s caregiver.
–Bob DeMarco

Pat Summitt stepped down today as Head Coach of the Lady Vols.  Less than a year ago she announced a diagnosis of Alzheimer’s Disease.  Fortunately she has plenty of money to pay for round the clock care.  Most people don’t.  But all the money in the world can’t reverse her fate.  Not yet.  

                                                    Maybe someday?

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2011 is drawing to a close and I’m feeling pretty good about myself.  This last New Year’s resolution stuck and I was able to accomplish what I set out to do.  It’s taken the year, but the “skinny” clothes section in my closet is where I can now navigate for the day’s apparel.  Hooray!

True confessions here …

People marvel at the size of my new closet, filled with clothes.  What they don’t realize is that, at any given time, only a small section of it is where I head each day.  That chunk varies from its neighbors by 2 or 3 sizes, depending on the year  –  the smallest portion representing “God I wish I weighed that again!”  to…  “Sh**, I’ve gotta lose weight!”

weight loss tracker week 2

Image by The Shed1 via Flickr

It’s thrilling to admit that I’m, as we speak, five pounds away from “God I wish I weighed that again!,” which means that area is where I can now pull daily clothes.  Only my favorite pieces were saved over the years; some of them are classic enough styles to work for today.  Others will have to be given away, but not because they don’t fit!

Losing weight is a huge challenge for me because I love to eat.  Fortunately my taste buds have never yearned for fast food, fried or high fat.  Sweets are what always derail my good intentions.  Just about anything chocolate.  And ice cream.  By the gallons.  Oh, potato chips are high on the list too.  I LOVE potato chips!  I’m a living example of “one is too many and 50 is not enough!”

So, to lose weight I had to curb the tendencies to eat that crap whenever I wanted, in whatever quantities I craved.  After many unsuccessful tries on my own, I finally turned to Weight Watchers – and I’m living proof (along with my husband) that the program works and it can be adapted for each individual’s taste preferences.

There is no magic formula and this blog is not a commercial for Weight Watchers.  The truth is, a lifestyle change that involves proper portion control for each day, exercise, and time (in my case a year) made the magic happen.

Yay !  This gift is my favorite New Year’s present to me.

On to another year and another 5 pounds!

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People are usually wowed by my revelation that I’m a hospice volunteer, more than likely following that reaction with “boy I could never do that.”   They ascribe all sorts of saintly attributes to me which is uncomfortable, because they’re not true (ask my husband).  What is true is the following list … in no particular order … at this time of lists.

I receive much more than I give.

Time and receptivity is all that’s required and in return I learn about life and what it means to be human.  There is no other time in a person’s life when the need for true connection is greater.  To be invited into someone’s ultimate personal journey is a gift not to be taken lightly.  It holds great responsibility for truthfulness and vulnerability with its attending need for confidentiality.  Life’s lessons can be transmitted in just a few final months and I’m awed by the opportunity.

Hospice care givers are selfless heroes.

After a certain point a person in hospice care can no longer go and do.  All that’s available is to Be.  It’s the caregiver who is their loved one’s wheels, hands, utensils, hygienist, eyes, ears and task accomplishers.  They become housebound, leaving only when someone’s there to sit vigilance in their stead.  Life can exist that way for months, depending on the nature of the illness.  And it’s they who experience the deterioration of the person they knew and loved who’s no longer the person they remember.  They give selflessly without complaint – the greatest gift of love.  They lead invisible lives until theirs can once again resume.

Live life the way you’d like to be remembered.

This lesson can be sobering for someone on a deathbed.  One of my patients was postponing her death as long as possible even though its extension caused her suffering to be prolonged.  When we learned that she was afraid to die because of her shame about the pain she had caused others in her life, and her subsequent fear of retribution after death,  we called in her pastor to pray with her, allowing her to ask for the forgiveness she believed she needed.  And that included a necessary plea to her husband.  The next day she died.  No-one wants to be haunted on their deathbed.

Two friends

Authentic relationships are the only kind to have.

Once I experienced a true human connection I realized that it’s the only type I want.  Life is so short, putting on airs and pretending to be someone you’re not is foolhardy and a waste of precious time.  Being invited to peer into someone’s soul can be profound.

Friendship

It’s gratifying and enriching to be of service.

My time, until now, has been paid for by a number of companies who determined the value I brought to their organizations.  Doing what I did had market value and its commensurate performance standards. So most of my waking hours were spent performing to expectations – theirs and mine, tying my definition of value to size of paycheck.  Today I know differently and it’s had a profound effect on my life.

Day Hospice

Love comes in many flavors…

and romantic love might be the most shallow.  Relying on a family member to perform hygiene needs can force the final release of dignity.  And yet it’s part of the dying process.  Attending to people during their greatest time of need requires true unconditional love.

Friendship, Göteborg, Sweden

Image via Wikipedia

Shedding a facade makes room for intimate connection.

There are no more airs during the dying process, only naked humanity.  When I walk through the doors of a patient’s home I leave my defensive walls behind and open my heart to anything that might transpire for the next few hours.  I was privileged to attend to one elderly patient during her active dying phase with her equally elderly husband by her side, over wrought with grief.  With fever raging and her husband helplessly watching, I applied cool, damp wash cloths to her head, chest and arms, speaking soothing words as her breathing changed.  I witnessed her husband’s tears and last words of love and kiss goodbye – an unparalleled moment of intimacy that I’ll never forget.  Even her children didn’t experience this exchange between their parents; by the time they arrived she’d lost consciousness.

Change is the only constant.

Spending time with the dying certainly drives this point home.  Photo albums, pictures on the walls, stories from family members – those are the only ties to who this person was – his likes, her dislikes, their careers, their passions. This new person only shares the same name.  Most of the time I’ve never met the person they describe.  Life represents one changing moment after the next.  Might as well embrace it and enjoy it.

Patient

Trust defines our human-ness.

When you’re dying all there is is trust.  Trust that those who are there will do what’s right and take no advantage.  The dying slowly lose all control over their lives, leaving it in the hands of those around them, trusting that their wishes will be honored.  It’s heartwarming to watch adult children assume the role of parents and caretakers.  And the process reveals the true character of people.

Original caption: Ne ties a friendship bracele...

Image via Wikipedia

Listening without judgement is vital.

My role as a hospice volunteer is to do whatever the patient needs at the time.  Some like to be read to, others enjoy playing games.  One patient just wanted to watch old movies.  And one gentleman waited until his wife left to break down and grieve that he wouldn’t be around to counsel his grandson into manhood.  This man’s son died the year before and now his son’s son wouldn’t have a grandfather.  It was more than he could bear and it took all his energy to stand strong in front of his family.  Many patients need the ears and hearts of people who come with no family baggage.  Holding hands and simply nodding provides comfort.

Hospice

Friends show their true colors in time of need.

And many walk away, never to be heard from again.  It’s easy to be friends when life is humming along; it requires much more mettle when there’s nothing to be gained in return.

Mother and Child watching each other

Image via Wikipedia

Recognizing mortality energizes living.

Working in hospice is not depressing.  It’s not morose.  It’s not morbid.  It ends in sadness but inspires vitality.  When we recognize that life will end – for all of us – then we’re compelled by an urgency to appreciate each day and be aware of it.  Awareness of the present is a Buddhist tenet and that lesson stands front and center in hospice.

Hospice

Hospice is a gift.

It offers the dying a chance to end their days in comfort.  Without pain.  Without tubes attached.  Outside the beeping noise of an ICU with its antiseptic smell and sterile walls.   And it teaches the greatest lesson to accept that which you can’t control.

Yes, hospice inspires living.  May be we all be so inspired.

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