Feeds:
Posts
Comments

Posts Tagged ‘Alzheimer’


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.

Advertisements

Read Full Post »


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?

Read Full Post »

%d bloggers like this: