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Posts Tagged ‘Alzheimer’s disease’


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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