By: Revanche

Dementia in the Family: The long road to nowhere

January 31, 2010

She changes by the hour. When she’s industrious, bustling around the kitchen, it might be in the guise of a young housewife eager to learn.  Sometimes she’s the seasoned veteran barking at my dad for hovering nearby anxiously in case she should slip, trip or burn herself.  Then she turns around and she’s confused and angry. Why has he been keeping her at home?  She needs to go grocery shopping. She needs to buy things, anything, right now.  Why won’t he take her?  They didn’t just go that morning, she would remember if they had!  He’s just trying to keep her prisoner. He’s just trying to hide money from her.  Fine. Fine! Don’t take me, I hate you!

She sulks.

Then, slyly, she sneaks out the front door, racing for freedom.  *pat pat pat pat* Her slippers slap the concrete and she makes good the escape and exults in tricking her captor.  She stops to talk to the neighbor.  Nonsense and gibberish pour out, the neighbor nods understandingly and pats her shoulder. As soon as Mom heads to exit the cul-de-sac, the neighbor knocks on the door: “She’s out again!”

Another weary race to hunt her down. This time she’s in a grocery store trying to sneak a toy past the cashier, that time she wandered into a strange neighborhood and couldn’t remember where she wanted to go.  Still others she’s trying to find a park where she can play with the other kids.

“She’s getting worse,” my dad admits. “I’m struggling to keep track of her, I’m hardly sleeping, she can’t be left alone and everything causes a fight. Your mom’s getting worse.”

Her personality has morphed from a no-nonsense, hard-working go-getter to a fractured, broken soul.  The fire that once burned in her, driving her from a dirt-poor childhood to leave her country, build a life from the ground up, raising two children and supporting an entrepreneurial husband’s morale and carrying more burdens than any single right-hand woman should have to … that fire’s still there.  But it flares and sputters through a shattered prism of reality.

For the past three years, my family’s been struggling with the reality of living with a family member developing dementia.  It’s the latest in a series of health problems, beginning with diabetes that went undiagnosed for years which led to a number of complications including high blood pressure, strokes, damaged eyesight, impaired nerve function. She also developed kidney problems, an inability to sleep, and neurological problems (constant vertigo, impaired judgment, short and long term memory loss).  Congruent with my dad’s inability to hold a job and her guilt over my supporting the family, we added anxiety and depression to an already volatile mix.

Every day is a new struggle.  It’s not just Sisyphean, trying to keep the boulder moving forward from day to day without letting it slip and crush us all; it’s also a Promethean epic of facing a rotating set of behaviors that range from destructive, to adolescent, to vehement worrying. She’s still a mother at heart, that instinct still lives but it lashes out destructively, pathetically, wishfully.

The woman I live with is my mom, but not really.  This isn’t the person who raised me.  But she’ll always be my mother so I’ll always provide for her.

My dad’s suffering just as much from the depression and anxieties of being a full time caretaker as she is from being the patient.

He’s had to turn down job offers with a decent salary but no benefits because according to the Social Security folks, if he earns as much as $600 a month, she will lose all her disability benefits AND her medical care.  The latter is critical because as much as I would prefer to purchase independent health insurance for her, no insurance company will touch her.  Even if I could afford upwards of $1500/month, which I can’t right now, she wouldn’t be covered for any of her existing conditions.

Family members have counseled him to consider divorcing her so that he can separate his finances from hers and maybe start to dig himself out of this hole without causing her to lose all her care.  He can’t wrap his mind around the thought; I can’t believe that my family has come to that.

Until I find a job that pays enough to make more permanent arrangements, it’s inevitable she’ll eventually need more than my dad’s care, I’m researching respite care options to give him a break.

Through the California Caregivers Resource Centers, I’m looking for respite care options. I’m willing to pay reasonable rates for the assistance – I don’t expect a free ride – but given how cash-strapped California is, I’m not sure that they’re even still offering services at any price.

For those in the Los Angeles area, the Los Angeles Caregiver Resource Center came very highly recommended by a local psychologist.  They provide some excellent free services to caregivers of  “adults with brain impairing conditions, such as Alzheimer’s disease, stroke, Parkinson’s and traumatic brain injury.”

Karen was kind enough to send me this link to this Help Guide for Understanding Respite Care. From there I found the Family Caregiver Alliance (FCA): National Center on Caregiving.

The FCA page provides links to the Area Agencies on Aging (AAA) which service the state on a county level.  They’ve also got links to a number of other resources:
General Information & Assistance
Services for Family Caregivers
Services for Care Receivers Living at Home
Resources on Living Arrangements for Care Recipients
Government Health & Disability Programs
Legal Help & Advocacy
Disease-Specific Organizations
Family Caregiver Organizations

I’ve got the phone numbers for our local county, and will call to see what services are provided in this area.

As riddled with error, delay and obfuscation the county health system has been, I’m foolish to hope for better from the caregiving resources that are also state-funded, but that’s all I’ve got left right now.  Just a little bit of hope.

That’s all I can do on this front for now, wish me luck tomorrow.

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