This piece originally was published before the presidential election for Caregiver Relief, which no longer is live. Reprinted here with permission. Special thanks to Diane Carbo and Judy Morton.
By David Heitz
You will find that among caregivers, we don’t hesitate to just step right up when we know someone we love very much needs help.
In the beginning, it may not seem like we’re doing much. Frequent stops at mom’s or dad’s home just to say “hello,” to check and make sure that the house or apartment is not in disarray, that he or she has food and is eating, that they still are able to laugh and joke.
Our thanks? Often, we are accused of “just mooching.” Surely our motives can’t be pure, particularly if mom or dad ever helps us out.
Even when our parent becomes incontinent, combative, and the constant falls begin. Even when some sort of terminal diagnosis is made, or a dementia-related illness, the feelings of ugliness between siblings usually are set in stone by then. We are insulted, because instead of a thank you, we are treated like freeloaders.
Our non-caregiving siblings so truly want to believe that we are somehow to blame for the financial drain the disease took, that forgiveness (for what, I am not sure), or an apology on their part often never happens.
I remember early on after dad’s diagnosis of behavioral-variant frontotemporal degeneration going to our local elder ombudsman organization, which I can only describe as worthless using the nicest of terms. They told me, “We don’t do that” when I asked for a family counseling referral.
When our parents are finally dead and buried, it doesn’t matter. We know we did the right thing. And our parents certainly knew all long. But it doesn’t mean we don’t want all of America, including those running for president, to know what sorts of suffering we endure and why it has to change.
Caregivers often end up financially devastated
“When my dad was diagnosed with cancer, I was 31, working as a career office temporary,” Judy Morton tells Caregiver Relief. “At first, I visited him whenever I could, after work and on weekends. One day, a nurse told me that my dad said he always felt better when I was there, because he knew that I would take care of anything that came up.”
Shortly thereafter, Judy took a leave of absence from the agency and spent the next months taking care of her dad, both in the hospital and at home. “It created a financial hardship for my husband and me, but neither of us regretted that for a minute. I was able to give my dad comfort and security, and I was able to give my mom the gift of just being with him without having to do the hands-on care.”
Soon Judy became the “default” family caregiver whenever anyone needed help. And so it goes. “Since for most of that time I was still working as a temp, and I also spent 10 years behind a chair as a hairdresser, it was easier for me to take off when needed,” Judy explained. “And I don’t have children, so my sisters felt it was ‘only natural’ that I should do what needed doing, since I didn’t have a ‘family’ to care for. My husband did not appreciate this attitude from them at all.”
And the next thing you know, Judy was caring for her uncle too, her mother’s youngest brother. Because of her, he got to spend a final two weeks in his home before dying in a hospital.
And mom? Well by this time she was becoming more and more frail and developing memory issues. “After consultation with her lawyer, mother granted me Power of Attorney.”
In the end, mom had Parkinson’s. She suffered a massive stroke in the hospital, along with pneumonia. Eventually she died from a fall.
“As her Parkinson’s had worsened, and even before it was actually diagnosed, I was having to take more and more time off from work to take mother to medical appointments and deal with her finances,” Judy explains. “I lost a week of work when her in-home aide stole her credit cards, checks, and car.
“Canceling the cards, getting copies of everything, writing letters…It took me 13 months to get it all finally settled – and we could not get the police to arrest (the alleged perpetrator).”
Next came the estate, which often is the even uglier fight after the long caregiving battle. Judy tried to go back to work in 2009. She was offered a job as a file clerk for $9 per hour.
And now her husband has cancer.
I’ve been a journalist for three decades, and am quite the cynic. But folks, stories like Judy’s are anything but fiction. Our presidential candidates need to wise up to the fact that we have 11,000 Baby Boomers per day turning 65, and a nation ill-equipped to care for them. What this means is that a generation of caregivers are going to be the next burden, broke from caring for their parents, unable to care for themselves, fraught with mental problems, substance abuse problems, and broken families.