After fourteen years of undiagnosed symptoms, Jeneva and Roger Stone’s son Robert was found to be the 9th reported case, worldwide, of a rare genetic disorder, Dystonia 16. Since he was thirteen months old, he has been challenged by disabilities in mobility, speech, feeding and overall muscular deterioration.
Christy Shake’s blog, Calvin's Story is an extraordinary chronicle of her family’s struggle to care for her son. At any moment, Christy and her husband Michael can find their lives under assault by what she calls: “…a savage monster that eclipsed all other adversity we had yet encountered. That monster was, and continues to be, epilepsy.”
Caring for a child with a severe disability means a lifetime of being an outsider. Heather Kirn Lanier, a poet, teacher and mother, beautifully illustrates this experience in her post “Notes from the Land of Beauty and Difficulty” from her blog, Star in Her Eye.
Elizabeth Aquino, her husband, and two of her daughters care for Sophie, who was born happy and healthy nearly twenty years ago. Within months of birth, Sophie started having seizures. Elizabeth writes...
CAREGIFTED is pleased to announce the Caregiver Blog of the Week Award! This award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.
Caregifted recipient and award-winning poet Barbara Crooker had one of her poems read by Garrison Keillor on The Writer's Almanac on 12 August, 2014. The poem chosen by Keillor takes on an entirely new dimension after you learn a little about the poet and her life as a long term caregiver.
Tricia is the single mom of not just one but triplet seventeen-year-old boys, two of whom are severely autistic, unable to communicate, subject to obsessive and perseverative behaviors, afflicted with digestive problems and incontinence, and periodically incapacitated by rages or meltdowns. More than once, Tricia has been bruised and battered when a kid couldn't contain his impatience, anger, or excitement. She is remarkable for her cheer and steadiness in devotion to them, but worries about what will happen when the last of their school-age support programs end, when she herself will be passing into later middle age, and less able to contain or care for them. Meanwhile, she divided her getaway time between one of CAREGIFTED's erstwhile haunts (Eastport, Maine) and one of its new destinations (Victoria BC across the border from Seattle). On a random stroll through Chinatown, she tried on a wig that made a material transformation as striking as the psychological one she feels when she gets a breather in places of great natural beauty-- so we made a gift of it, to her. She says on her arrival home the two most disabled boys were respectively mystified and amused by it-- (but of course delighted to get her back in any incarnation!)
Jean and Paul jointly care for 30-year-old Jackie, who is confined to a wheelchair, unable to walk or talk, but whose smiles and hugs are sweet motivation. Nevertheless, they get weary, working to raise enough money to support the family, and alternating the care for Jackie. In Victoria they had a chance to relax in style at the Oswego Hotel, eat well, raise a glass at a few pubs, go kayaking (Paul) and garden-prowling (Jean), and have restorative massages (thanks to the wonderful people at the Spa Magnolia near the Empress Hotel).
There's a new respite voucher program for caregivers in the Pacific Northwest! Caregivers in this region who do 40 hours a week heavy-duty care for a disabled family member-- check it out-- it might help YOU get to YOUR Vancouver Island getaway for a week!
Just one of the caregivers writing so eloquently these days about what more and more people are finding themselves doing -- caring for a family member who really needs it ..
In December 2013, caregiver Berenice chose a CAREGIFTED getaway in Victoria, BC (AKA Canada’s Garden City), for a leisurely week to relax and explore.
Here are a few images and words -- sharing a bit of her experience as a caregiver to her husband Herb and on her trip to Victoria.
CAREGIFTED is honored to host all its caregivers, and thanks those family-members at home, as well, who manage a week without them, and make these breaks possible!
What’s the hardest part about caregiving that nobody sees?
The life-and-death situations are the hardest part. [Since the actual stroke years ago] we’ve been through a number of medical crises in recent years that came out of left field, unrelated to the stroke or heart issues. Fear of falling is always with us when he walks with his left-sided pyramid walker [even] under close supervision -- because the next fall could potentially be the one that puts him in a nursing home.
Would you describe your special interests or talents outside of caregiving?
My special interests have taken on new dimension since Herb’s stroke in 2001 when I became a full-time caregiver.
I’ve written two books about stroke, I write for the National Stroke Association and have developed two webinars for them about care-giving issues, and [as] a playwright, struggling now with limited time and attempting to gain attention for a play that I’ve been working on for six years.
[In what time I have] I also enjoy attending classes offered by local colleges… my favorite continuing program involves quantum physics and cosmology. Although I have only a limited science/physics background, the mental stretching helps me remain sharp in my senior years.
Describe a moment during your getaway when you felt the most relaxed or at ease.
On the first morning I awoke at 4 AM. After turning on CNN to see what had happened overnight in the world, I shut off the TV and bed lamp and went back to sleep for several hours. I was relaxed enough to give myself permission to sleep, read, and luxuriate in the peace and quiet of a comfortable hotel room. And since I elected to have a concierge, I could indulge in what I miss most, enjoyable, free-floating, and intellectual conversation…
In three words, describe how you felt when you returned from your getaway.
Relaxed, rejuvenated, refreshed are the three words to describe how I felt on my return-- coming home, dropping my suitcase, and kissing my husband hello.
What thoughts or information would you share with other caregivers who are going on their own getaway?
CAREGIFTED makes this getaway as easy or as challenging as you prefer. My advice is to enjoy the pampering, take time to luxuriate, catch up on your sleep, and then fit the schedule to what you feel like doing.
You have the freedom, both in terms of time and paid expenses, to take advantage of as much or as little of the surroundings as you please.
Caregivers from all over the country (and all over the AGE map) met for the first time, at a celebratory luncheon, and sparked up into such animated exchange one would think a long-lost tribe had been reunited.
Interested in learning about what inspired Molly Ringwald, who will be performing at the CAREGIFTED Boathouse Jazz and Poetry Soiree on February 28, to become a jazz singer? Click here to read this absorbing article in The Stranger.
Join us for an evening of Jazz, Poetry + Fundraising. Featuring actress & jazz chanteuse Molly Ringwald, former US poet laureate Robert Pinsky, and world-touring jazz pianist Laurence Hobgood.