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Archive for the ‘palliative care’ Category


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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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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