Today is the day my community, the Quad-Cities, basks in the national limelight. It’s Iowa Caucus day.
Today I am composing this open letter to the presidential candidates regarding an issue important to me and so many friends I have made around the country: Caregiving.
So far, the only candidate who I know of who has acknowledged the caregiver crisis and has proposed a plan for alleviating it is Secretary Hillary Clinton. I am an undecided voter and do not endorse any candidate, but I certainly applaud Secretary Clinton for blazing the campaign trail on the caregiver issue.
My dad, a proud member of the United Auto Workers and a retiree of John Deere, maker of the world’s finest tractors, died in a nursing home Sept. 27. I was at his side, as was my brother, and a hospice social worker who I never will be able to thank enough.
Hard work, determination: It’s what my dad stood for.
Dad spent more than $100,000 of his own hard-earned money in the memory care facility he lived in for two-plus years prior to the nursing home. The memory care facility did not even send a plant when he died.
A long and painful goodbye
My dad died of a very rare brain disease called behavioral-variant frontotemporal degeneration, BvFTD, or Pick’s Disease. He already was living in a facility when I returned to the Quad-Cities from Los Angeles in 2002.
When I returned to the Quad-Cities that September day in 2002, my dad decided he no longer wanted to live in the assisted living facility. He left the facility and moved back into his apartment. I began to check on him twice daily.
Most people don’t even understand what caregiving is. It is a years-long commitment. You turn the other cheek when the person you are caring for insults you. You provide them companionship because you know they need it and nobody else wants to be bothered with them. You answer the phone every single time they call. No matter what. You call them several times a day too, because, in your gut, you know something is not right and over time things are only going to get worse.
Did I spoil him or was I a mooch?
Ultimately you get used to cleaning up their apartment (or your car) when they blow their bowels out. You pick them up off the floor after falls. You listen to them while they talk about old times and repeat the same stories over, and over, and over.
And, like me, eventually you move in with them full-time and do what you can to make sure they make it through each day, even if you are struggling yourself to make it through each day.
Through the years, I was accused of spoiling my dad and mooching off of him all in the same breath. Now, I am spending hundreds of dollars on an attorney (about $1,700 thus far, to be exact) just to make sure I get what my dad left me in his will.
Related News: Why Those Caring for People with Dementia Often Die Before the Patient Themselves
Every day, 11,000 Americans turn 65. Their bodies are outliving their minds. Millions of Americans need round-the-clock care. Much of our elderly end up losing their life savings while sometimes being mentally and physically abused in the process. Many times the perpetrators are family members; other times the abuse occurs in ruthless, bottom-line facilities.
My interview with U.S. Secretary of Aging Greenlee
The highlight of my career after going back to work when dad went into the memory care facility was landing an interview with U.S. Secretary of Aging Kathy Greenlee. She told me something that forever has stuck with me: With elder abuse “there are no survivors.” You can read my interview with Secretary Greenlee by clicking here.
A year after dad went into the memory care facility, I stopped drinking. I am sober to this day (two years Memorial Day weekend). I knew I had to quit drinking because the level of incompetence in our elder care system is so maddening (every caregiver knows this) that it can send a person into daily fits of rage. Coping with the bottle almost left me for dead when I was so drunk I ended up being assaulted by someone I should have had every reason to trust.
I was continually disrespected by many in “the system” as I fought tirelessly for my dad’s best interests, as are so many caregivers, particularly those not granted power of attorney status, like myself.
There are plenty of instances where the person who ends up being the actual caregiver isn’t the one who had been legally designated as such by the elderly person all those decades prior to their mental incapacitation. There is nothing all that unusual about my story, even down to the last gory detail. And that fact alone is a disgraceful black eye on our entire country.
Nurse: Your dad was just found in a pool of blood
I received a call in mid-April from dad’s memory care facility. The nurse told me that my dad had been found in his room, in a large pool of blood, and appeared to have lay there all night. A CNA relayed exactly the same story about a week later.
Keep in mind, I got this call after complaining repeatedly about dad sitting in dirty diapers, about abuse he claimed he was enduring by certain facility employees, and about a handful of incredibly rude and insubordinate employees who regularly showed total disrespect to their supervisors. Their lack of respect, poor work ethic and smart-mouth comments alarmed me as it made it perfectly clear that no one was in control over there. I called the corporate office several times to report the free-for-all atmosphere that occurred on the weekends of this memory care facility.
We live in an electronic world, and I still have copies of every written complaint I ever made over the course of the two years he lived there, as well as messages from the many, many good employees who told me things they obviously wanted reported to authorities. I struggle each day about what to do with these messages, as they were given to me in confidence. At the same time, most of these employees have now fled the company.
In the emergency room that day in April, my dad again claimed he was struck by someone at the facility. He said it in the presence of the doctor, a social worker, and myself.
One complaint too many: I was thrown in jail
Three weeks later, I showed up at dad’s facility one morning and saw someone I thought was a danger to myself and to my father and who I did not believe belonged there. I had every reason to be fearful and this is a known and legally documented fact, the details of which are no one’s business other than mine and the authorities who know them.
I reported this person to employees. I wasn’t taken seriously (in fact, the usual handful of incredibly rude employees raucously laughed at me) and that made me angry. I raised my voice. After all my dad and I had been through with that place, there was nothing unreasonable about my reaction.
Yet I was thrown in the county jail and held there for two days on no charges at all, stripped naked and placed on a concrete slab in a suicide cell, after refusing to sign a document saying I had assaulted someone. Four hours after being held there, I was evaluated by a woman from the local mental health facility who told me I clearly was not suicidal and would be promptly released. I was not.
The wellness director of the facility filed an order of protection against me. When I was released from jail I represented myself pro se and the order was dismissed.
I then was trespassed from seeing my dad. His false teeth went missing the next day and never were replaced (the second upper plate they lost). I did not see my dad for 108 days. This, after for two years straight, I visited him almost every day, sometimes twice a day, in the winter even walking from the bus stop to the facility in freezing and even sub-zero temperatures (I do not own a car).
State clears facility of abuse, facilitates reunion
The state of Illinois ended up clearing the facility of the suspected abuse I reported, including my trespass, which I also reported as elder abuse, as isolating an elderly person from their caregiver is one of the most common forms of abuse there is.
I asked the state official, “So basically it was just determined my dad had dementia and he just made all these reports of abuse up? All those reports of being thrown around by facility employees?” The state official replied, “I am so sorry, but at least it has been arranged that you are able to see your dad again.”
My dad was transferred to a nursing home (my brother was given no choice but to move him) where we were reunited. My dad died five weeks later.
By the grace of God I survived, but others need your help
What got me through all of this? Our Lord Jesus Christ, number one. And learning I was not alone. I have heard from wives all around the country who have been trespassed from the very elder care facilities they continue to write checks to because they cannot find other facilities that will take their “difficult” husbands.
On behalf of caregivers past and present, I urge all of the candidates to step up right now and tell us your plans for addressing this national health crisis; elderly people physically and/or mentally abused, their caregivers taken advantage of, families losing their life savings due to the cost of long-term care, sibling relationships destroyed forever.
I implore all caregivers to press presidential candidates for answers to these problems as they get to chance to meet them over the course of the next several months, as Iowa already has. I urge those attending the Iowa caucuses tonight to discuss these issues with friends and neighbors.
I look forward to hearing from the candidates themselves and reporting their plans to help caregivers after tonight’s Iowa caucus. You can find me on Twitter (@DavidHeitz) and Facebook (David Heitz Health)
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