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Pat SummittToday was a day of national mourning that Lady Vols Coach Pat Summitt died, succumbing to her horrible Alzheimer’s Disease. She was one of the greatest women of our time coaching 38 consecutive women’s basketball victories – the most winning-est coach ever. She was a strong, tenacious and fierce, yet loving, leader who wouldn’t take no for an answer. Men, women and children can learn a lot from her examples of leadership. Her players loved and respected her. Fans adored and revered her. And she leaves a legacy that few mortal people can touch. Not just as a coach, but as a person who helped build strong young women for tomorrow.

Yet she was fallible, as we all are. Death will befall us all. And death by Alzheimer’s Disease is a particularly insidious affliction that affected her family as much, if not more, than her. You see, after a while, it stole her memory and her identity, ultimately leaving the shell that “used to be” the famous and very personal Pat Summitt. I have no intimate knowledge of her days with the disease and without. I do, however, have first hand experience with Alzheimer’s – from afar.

My perspective is different than most. Certainly I knew of Pat Summitt. Everybody knew who she was and what she accomplished during her productive lifetime. But as a former hospice volunteer whose last patient lived 10 years with that disgusting disease, I watched a person diminish and a family devote their waking hours to making her comfortable and trying to engage her. Cajoling her to eat, to walk, to converse, to show some semblance of the wife and mother they remembered. Ultimately, this patient became mute and bedridden for the last five years of her life. I saw her blank eyes stare into space during the hours she didn’t sleep. She was as close to a vegetative state as I’ve ever witnessed. The photographs of the woman she used to be didn’t even resemble the woman I visited. She was no longer that person. Her husband was “trapped” (my words) in a marriage to a woman he’d lost years earlier. Yet he was fiercely devoted to her care. He talked to her as though she might answer. Cracked jokes. Reminisced. Showed her photos of the travels they’d taken in their RV. Offered a litany of his day. Prepared meals he thought she’d enjoy. Scrupulously cleaned her, lifting up her dead weight out of the bed and onto a toilet or the tub or the chair. Delicately, lovingly, devotedly.

He was housebound until I came to relieve him once a week to shop, run errands or, with my prodding – have some fun with family or friends. His wife showed no signs of life except breathing in and breathing out, eyes sometimes open and staring and sometimes closed for sleeping. That was his life. For five years! Five years before that he’d gone through the stages of Alzheimer’s progression. Unpredictable behavior, walking out the door to head somewhere though she didn’t know where, unexplained outbursts of anger and tears. Life had been a roller coaster. Until she finally, thankfully, succumbed. He admitted he’d lost his wife years earlier. He didn’t know who this woman was that she’d become. Yet he lived on memories and devotion until she was freed. And so was he.

From my perspective, it’s a blessing that Pat Summitt died. Her diagnosis five years earlier had been her death sentence. There is no cure. There is only disintegration. I say she’s free. Free to be the Pat Summitt we all loved and respected. No more pity, no more tears, no more wondering. She’s free. May the great and unparalleled Pat Summitt rest in peace. Her legacy lives on.

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Alzheimers ribbonThe last time I saw Martha everything seemed status quo even though it had been a month since my last visit.  Her head was resting comfortably on a pillow, mouth was wide open as usual and she was sound asleep.  She was usually sleeping when I arrived and when I left, and her husband said she now spent much of her time asleep.  It was getting more difficult to awaken her for meals.  That was the sign we’d been waiting for.

Martha has been uncommunicative for 5 years, in hospice care for 4 years, and in a vegetative state for about a year.  She’d been living with “end stage Alzheimer’s Disease” during those same 4 years and living with the disease for about 11.  Doctors said she’s the first person they’d met to live “like that” for so long.  Most patients die sooner.  For some reason she’d been hanging on.

Martha finally died several days ago and I seemed to be the only one relieved – for her sake and for her husband’s who’s devoted the last 11 years of his life to her care.

Some background …

rainbow01As a hospice companion volunteer I function as an impartial friend to the dying and to the family who cares for them.  The adage “when a person is sick a family is sick” is true.  Illness can drive a family apart because of a shared history – or together as a united force.  In Martha’s case the bond grew tighter.

When she was diagnosed her husband promised to take care of her until the end, as she did for her mother who finally succumbed to Alzheimer’s years earlier.  He took that pledge seriously, and literally, essentially becoming hostage to his house unless he could find someone to “sit” for her on occasion.  That’s where I came in.  Three years ago I became that person who “babysat” as he called it.

True_Friendship1Over time hubby and I have become fast friends, visiting together before and after he ran his errands.  Eventually I persuaded him to include others in his life, people vibrant and leading healthy lives.  Hubby started going to Bingo at the senior center during my weekly visits.  He made friends there.  Continued gentle prodding inspired him to invite them over during the week for pizza and card games.  Slowly the twinkle returned to his eyes, he laughed again and regaled me with stories from his week’s events.  I got him books to read, movies to watch and together we went through his photo albums of happier days when Martha was his wife and not the living corpse in the bedroom.  He giggled about a couple of the “old ladies” at the senior center seemingly flirting with him just because he helped them on and off with their coats.  He was starting to feel like a man again – all the while – feeding, bathing, toileting, dressing, transferring and giving meds to his wife in the next room.  And he spoke so lovingly to her – calling her his pet names, rubbing her cheek, whispering in her ear as though they were sharing a secret from yesterday.  She laid in bed, mouth wide open and eyes staring blankly, not moving a muscle – while her chest went up and down with each breath.  “She knows it’s me,” he always said, “I can tell by the look in her eyes.”  Really?  It looked like the same blank stare I saw each time I was there.

Probably two – three weeks ago Martha turned a corner.  She slept almost all the time and her breathing became shallower.  Then she refused the spoon he continually tried to put in her mouth with food.  Then she wouldn’t take the thickened water.

And then – finally – she died.

At Martha’s memorial service hubby was drowning in his sorrow, unable to contain the tears that insistently ran down his face.  And his grief remains intense today.

Kozzi-broken-heart-shape-cartoon-772x673His world has a gaping hole in it.  There’s nothing he has to do and nobody who needs his care.  Martha isn’t there anymore.  He’s not sure what he’s going to do.

So my relief for her peace and for his freedom is misguided.  While she is, hopefully, at peace he’s not yet free.  Love’s tentacles run deep.

I have much to learn.  And that’s why I do hospice work.

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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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My column from last Sunday’s paper…

A living will is one of those documents you don’t usually think about until circumstances force you to, and then its piercing questions cut straight to the meaning of life.

How hard, and at what price, do you want the medical system to work to keep you alive? Therefore, what does it mean to be alive? This is not light Sunday morning reading, to be sure. For me, the living will took most of a Sunday afternoon to labor through on behalf of my elderly father, whose health just took a turn for the worse.

The first question asked whether he wanted CPR to be administered. He’s always said that if there’s a breath, there’s hope, so I guessed he’d say yes. But now I read that risks of CPR, particularly in the elderly, include broken ribs — one of which could puncture his lung and require mechanical intervention and a chest tube. He could also suffer brain damage because of less oxygen to the brain, and vomiting that might cause pneumonia if it aspirates into his lungs. Really? Call me naive but I had no idea, and, as it turns out, neither did he. In other words, he could be sicker than when he started.

Of course, the alternative is death. So there lies the question: How alive is alive?

Many physicians spend their days saving lives yet would not want heroic intervention for themselves; they well understand that it’s often futile and, worse, imposes suffering on the patient. Dr. Ken Murray writes about quality of life vs. its length in his poignant blog called “How Doctors Die.” (http://bit.ly/LP2d7g)

So many people wind down their lives in an ICU attached to tubes because traumatized family members tell doctors to do everything possible. They’re expecting a chance for the patient to resume a normal life again. Often that doesn’t happen; the patient may live, but not the life they knew. Family doesn’t realize, nor are they usually told, what’s reasonable to expect. And in the process, tens of thousands of dollars are spent every day.

As a hospice volunteer, I witness the process of dying each week. Patients experience their final days receiving compassionate care that minimizes pain and offers emotional, social and spiritual support. It’s usually not death that people fear, but rather pain and social isolation. Facing the end, people realize that it’s relationships that matter and spending time with loved ones takes priority. A book by Dr. Ira Byock summarizes four things he found matter most to a dying person: “Please forgive me. I forgive you. Thank you. I love you.”

Author and philosopher Joseph Campbell says that the real search isn’t for the meaning of life so much as for the experience of being alive. Nobody wants to end their days wishing I had, or hadn’t — we all want to live significantly and feel we’re making contributions of some kind to the planet and each other. We want our lives to have meaning until our last breath.

One of my favorite reads is by Rodney Smith, whose book “Lessons From the Dying” is, despite the title, more about living. During his hospice career Smith gleaned insights about what’s important in life. There are gems throughout this work, but his summary point might be, “It helps to live with the end in sight.” Each day matters, and living it consciously is a choice we’re all empowered to make.

Everyone is going to die. The question is how do we want to live and at what cost?

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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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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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oh christmas tree, oh christmas treeThrough the front door there’s a great view of a decked out Christmas tree basking in  white lights, covered with snow and dripping with big sparkly white round ornaments.  A white Christmas is definitely being celebrated in this house.  But the mood is somewhat blue.

My hospice patient and her caregiver husband live here.  They’re both seniors and have spent most of their lives together –  working their family business and traveling in the RV in which they expected a multitude of road trips during their retirement years.

NEW MEXICO 2006 RECREATIONAL VEHICLE plate

Image by woody1778a via Flickr

Four years ago husband sold the RV; wife could no longer negotiate the steps to assume her role as navigator in chief.  That act signified an admission of his wife’s fatal disease and the death of dreams that had been years in the planning.  That was also the last year she spoke; she hasn’t uttered a word since.  Not because she was disappointed, but because her Alzheimer’s had advanced enough to rob her of voice.  Now husband spends his days taking care of her.

Decorating the Christmas tree is something they always did together.  In fact, she bought this very tree and the ornaments.  It came adorned with white lights and snow. This year they decorated together again.  He set it up, he added the balls, covered the tree base, wrapped the presents and carefully arranged them at the bottom.  Wife slumped in her chair, sucked her lower lip, wrung her hands and nodded off.  That’s this year’s Christmas, at least until his children join them in a couple of weeks.

Husband cherishes wife.  She’s the love of his life and when she was diagnosed 8 years ago he promised he’d care for her until the end of her days.  He meant it, despite the sacrifice it entails.

Being housebound is one of those sacrifices, except for my weekly visits to socialize with him and sit with her during the couple of hours he goes where he wants.  His spirits are high, he laughs easily, he loves big.  He embodies the true spirit of giving.  And when he allows himself to think of how things were supposed to be, the twinkle in his eye grows dimmer.

He inspires me.  He fills me with admiration.  What inspires you this season?

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