By David Heitz
I believe the most efficient way of creating change is by honestly, openly and thoroughly sharing our own war stories, whether they pertain to caregiving, addiction, a battle with cancer, or whatever the struggle may be. And during a presidential election year, there is no better time to speak up.
I mention caregiving and addiction because those are issues that have greatly impacted my life. I will use my experience from those fights to help others in any way I can.
So today I want to announce that members of my “After Caregiving” groups are going to begin sharing some of our stories, and lots of our questions, with the presidential candidates. I was happy to see Hilary Clinton a couple of months ago bring up the issue of caregiving. Hillary, who has served as a caregiver herself, knows that it can leave some people penniless, isolated, and in some cases, dead. She has come up with a modest proposal that would lessen the burden of caregivers, and while it may not seem like much, at least it’s a start. You can read about that proposal by clicking here.
And now Caregiver Relief plans to ask all of the presidential candidates what their plans are for improving the lives of caregivers. More on that exciting project is coming soon.
My own story and the suffering I endured while being a caregiver for my dad is pretty well known. I had resigned from my full-time job even two years before moving in with him. Prior to that, I checked on him in his apartment twice a day.
When dad went into a facility, I immediately went back to work, yet still found time to check on dad at least once a day, but often two or three times per day, especially in the beginning. But all that hard work culminated in a painful and ungrateful slap across the face by the facility, so to speak, when they trespassed me from seeing him. You can read all about that here. More details surrounding the circumstances of that day will emerge soon but, for now, consider me among “the lucky ones” regardless.
I say “lucky ones” because most people don’t have the money (I should say their loved one doesn’t have the money) to go into assisted living/memory care, or a nursing home, even if they can find a safe and acceptable place. My dad’s place did have a great staff and a great reputation when he first went in, but an ownership change resulted in what I observed to be a greatly reduced level of care that left my dad in danger pretty much night and day. As what is known as a “two to one” when it came the level of care he needed, my dad belonged in a federally regulated nursing home. Eventually that happened, and I was reunited with him one month before he died. That’s our reunion photo at the top of the column.
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What happened to me happens everywhere. Private pay assisted living/memory care facilities even trespass the wives who write the checks to the facility each month. I was not the POA, even though I had provided direct care to my father for many years. The POA duties had automatically fallen to my older brother when I was living in Los Angeles, and admittedly having large problems of my own.
Kasey Casem’s daughter, Kerri, was in a similar no-win situation. Kerri was prohibited from seeing her dad by her former mother in law. Like me, she got her pen out and also used her celebrity to work on creating change. Check out Kerri’s amazing organization, Kasem Cares.
As a result, what happened to Kerri and I won’t happen again to people in California, thanks to a bill signed into law July 8. Kerri founded Kasem Cares and now fights for people like ourselves and their loved ones in ways so successful she is getting laws changed all over the place.
“Conflict among family members is the last thing our loved ones want to see as they approach their final hours,” said Assemblyman Mike Gatto, D-Glendale. “I hope this bill will help decrease the heartache and stress of families already facing difficult circumstances.”
Ironically, I served as the editor of the Glendale News-Press for two years many years ago. So it makes me ever more proud that a Glendale assemblyman sponsored this law for Kerri.
“AB 1085 gives judges authority to direct, or grant, a conservator the power to enforce senior’s right to receive visitors, telephone calls, and personal mail,” according to a news release put out by Gatto’s office. “This will be an important mechanism for families attempting to connect with elders for what is often the last time.”
Meanwhile, Kerri is suing her former mother in law, who did not allow her to see her father, for “emotional distress.” I also was not allowed to see my father for 108 days. I have not yet decided whether I will seek damages or from whom. All I ever have wanted from day one is that those who hurt me physically and mentally (and also attempted to damage my reputation), particularly while dad still was living, to be brought to justice. I also expect fairness in the matter of the execution of dad’s will. It appears things are finally working out that way.
I was reunited with my dad three weeks before his death and was at his bedside when he passed, thank God.
Related News: A binding caregiving contract can keep family members out of court
My question for the presidential candidates: What are your thoughts on making a law like California’s federal? No child or spouse should be kept from their parent because a private-pay assisted living facility does not want to be kept on their toes by a demanding child or spouse.
Likewise, no child or spouse should be kept from a dying parent/spouse due to mal-aligned motives of a POA who may have been given the duties many years ago and under very different circumstances.
Still to come: Caregivers ask presidential candidates about why there isn’t more help available for respite care, how they are expected to pay their bills and take care of their own health, and much, much more. Stay tuned!