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Archive for the ‘Alzheimer’s Disease’ Category


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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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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