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By: Lisa Poisso
Date Posted: 9/30/2008
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Stuck in the Middle
I rip open the padded envelope with delicious anticipation as my 7-year-old daughter hangs over my shoulder to see what treasure Mommy’s Old Friend Maryanne has sent this time. Maryanne and I don’t talk often anymore, but she never forgets to send me jewelry from the lines she reps, once or twice a year. This time, there’s a handwritten card: No time for a long note … she’s taking care of her elderly mother now.
Self-doubt eddies around me like the black smoke thing from Lost. Why am I not taking care of my mother and father? If Maryanne’s doing it, surely I could find a way. My thoughts drift to a larger house with an accessible first-floor bedroom, sunny mornings chatting over tea at the kitchen table … my daughter proudly digging the day’s bounty of pictures and worksheets from her backpack to show Granddaddy … my son polishing off his latest piano work for Grandmommy ….
As my daughter dances away with my new necklace swinging from one hand, a more likely scenario closes in: My mother, who has late-stage Alzheimer’s disease, winding up for hours of colicky afternoon, taking a wild swing at whoever should dare to come too close … my father (from whom we took the car keys years ago) slipping out the door the moment my back is turned, seizing control of a mission to find something to soothe his wife yet utterly incapable of navigating the major cross street one block away (due to Frontotemporal Dementia) … confusion as we attempt to control my mother and send out a search party to retrieve my father … and my children frozen like deer in the headlights, unable to retreat from the bedlam that has invaded their home.
How could I possibly expose my family to that chaos? Still, I can’t stop feeling as if I’ve made the wrong choice in a shell game with no pea.
Hard choices about who comes first
Do failing grandparents and kids mix? Some 20 million Americans today fall into the category of the Sandwich Generation – adults caught between caring for their elderly parents and raising young children of their own. In these multigenerational households, grandparents and children joust for priority. Parents who assumed their households would expand to accommodate their parents as easily as their hearts swelled to accommodate second and third babies discover a different world.
They crash headlong into the same conundrum that keeps working mothers fretting about their children while they’re at work and gnawing sleeplessly on work issues once they’re at home.
Past a certai
n point of decline, there’s no way to combine elderly parents and young children – and the guilt that caregivers feel for not being able to meet two sets of needs simultaneously can be consuming.
According to experts, families who are crunched by sandwich care primarily deal with Alzheimer’s and other dementias. Unlike cancer and medical issues associated with old age, these incurable, debilitating diseases of the brain take years to unravel. Families pass their prime years emotionally landlocked, watching loved ones slip into a long, slow decline that can last a decade or more. Caretaking can eat its way through entire childhoods.
The raw reality of caring for two generations at once is a stark one. More than half of the caregivers queried in a recent Harris Interactive Poll commissioned by Christian Companion Senior Care and Presto Services feel forced to choose between the needs of their children or their parents at least once a week. Twenty percent feel they must choose one over the other every day of the week.
Yet what caregivers seem to want the most is not more hands but emotional support. In a survey from the Alzheimer's Foundation of America (AFA), only a third of the respondents said they need more help with their children, while nearly two-thirds wanted more information about how to help their children cope.
A grandparent’s debilitating illness inevitably creates what Dallas social worker Karen Warren calls “a palpable level of stress.” Parents may try to shield their children from the tension – but honesty is the best policy, Warren advises. Don’t try to maintain a false picture of normalcy. “Keep talking to them, because if nobody does, they’ll be left with figuring it out on their own and then not come to the right conclusions,” she counsels.
Area mom Susan Regalado’s 6-year-old daughter Hope doesn’t understand her grandmother’s mental decline. Bringing the older woman into their home after a stroke and resulting dementia has definitely changed the balance of the family’s relationships. “She says I’m nicer to my mom than I am to her. It’s almost like it’s a sibling rivalry. It’s been very strange,” describes Regalado.
The young girl’s life has been worked around obligations to ailing grandparents for years now (Regalado’s father passed away late last year). “I feel like I cheat her,” she admits.
Regalado’s mother has asked not to be put in nursing home, and the family is trying its best not to do so. Still, Regalado anticipa
tes that time will eventually arrive. In a voice choked with emotion, she admits to feeling some relief at her mother’s recent hospitalization after surgery, allowing the family a short window of time to devote to just each other.
Double duty
The vast majority of sandwich caregivers are mothers. Because of this, children increasingly are being called upon to contribute. For instance, more than a quarter of a million American children between ages 8 and 18 are currently living with loved ones who have Alzheimer’s, according to the Alzheimer’s Association.
What are kids up against? Warren ticks down the list of challenges: sadness at how their relative is changing; confusion when the senior acts differently or doesn’t recognize them; frustration over repeating information; guilt for getting angry at the elder; fear of unexpected responses; anxiety that they or another relative might also get the disease.
Programs to help kids understand and adjust to the changes in their loved one are few and far between. SCAN Health Plan in California and Arizona has launched a one-of-a-kind sensitivity training program for children that helps kids relate to their elders’ physical challenges. It’s the only program of its kind anywhere.
And peer support for children in families touched by dementia, which is on the rise, is practically nonexistent. A support group for tweens now forming through the Greater Dallas Chapter of the Alzheimer’s Association will be the first and only group for children in the region.
Kids from as far as Scotland gathered in Oklahoma this summer for the first-ever support camp for children of families affected by Alzheimer’s and dementia. Camp Building Bridges, conceived by a Missouri mother with early-onset dementia, offers children as young as 12 a respite from the pressure – and the much-needed company of other kids who can relate. “Counseling cannot help our families, because the therapists don’t understand early onset,” explains camp founder Tracy Mobley. “We’ve been to so many counselors who’ve said to us, ‘We really don’t know how to help you because this is so new to us.’”
Plan B
Many people imagine taking care of an elder to be a benevolent, placid sort of activity. They picture a bumbling, affable senior puttering about the house while they go about their own activities. Reality isn’t always so benign, especially given the surge of seniors succumbing to a decline in cognitive function.
People with dementia disp
lay unpredictable behavior. They may curse or say inappropriate things. They may pace and follow caregivers relentlessly. They may become belligerent and even physically violent. Replying to questions repeated day after day after day can set the entire family’s nerves on edge. These are not behaviors that are appropriate in a home with children – and yet they are just the beginning.
Dr. Kimberly Doyle, a neuropsychologist at Presbyterian Hospital of Dallas, spends almost every weekend away from her family to be with her father, who has vascular dementia, in Houston. “The kids are only 5 and 7, so they don’t really understand completely what’s happening with their grandfather,” she admits. “They just know that I’m not there to do the things with them that I always had.”
Would she bring her father back to her home if she could? “He’s impaired; he can’t sit up, he can’t walk, he can’t do anything. He’s got tubes and all those kinds of things,” she shares. “It’s been a little bit traumatic for them. They can’t really do anything; they can’t really interact with him.”
Geri Sams, an area social worker and geriatric case manager, urges parents to gather as many opinions and resources as possible before making the decision to care for an ailing relative.
If you do decide to bring your loved one home, Sams counsels, line up a Plan B. You’re planning for a long-term situation that will evolve over time. Where is your current plan of care leading? What will happen if your family’s income changes? Or if your elder takes a turn for the worse? How long can you keep up your end of the bargain?
I can’t pretend that I don’t pass plenty of nights with bitter tears on my cheeks, regretting the miles that separate my children from my ailing parents. When I call too late in the day, after my parents’ reserves of mental acuity have already evaporated, I overhear the struggle at the other end of the phone at their nursing home where they receive 24-hour direct supervision.
I hear the panic and loss of control in my father’s voice. I cringe at my mother’s uncharacteristic cursing and incoherent shouts as she rages against her inability to manage her body or see inside her own mind. I wait through lengthy pauses while wheelchairs are adjusted and shaky hands bounce the receiver.
This isn’t something I can bring into my home. This isn’t a child’s world. I can’t tell you whose world it is – and neither can either of my parents.
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