Originally published July 11, 2015, on Healthline Contributors, which is no longer live. Reprinted here with permission.
By David Heitz
My father’s dementia has turned out to be the ugliest thing I ever experienced in my entire life.
Worse than my parents’ horrible marriage. Worse than my mother’s death when I was only 24. Worse than being physically and sexually assaulted.
Not only has dad’s cognitive decline been heartbreaking – seeing him act like a child, and in recent months, seeing him cry – but what the disease has done to my family relationships may be beyond repair.
I’m not alone. As crazy as my family’s story is – and I’ll spare you the chilling details – it’s a scenario being played out every day, coast to coast, family to family.
For example, take radio superstar Casey Kasem. His children battled Kasem’s wife so they could be in control of their dad’s care. Country crooner Glen Campbell’s children did the same thing.
The story can go something like this: Dad begins to decline in his senior years, sometimes sooner rather than later. At some point, one of the siblings decides to take it upon themselves to begin checking in on the parent. What may start out as a daily visit to dad turns into three daily visits to dad.
Along the way, the caregiving sibling eventually ends up quitting his or her job. He or she becomes completely dependent on dad … for everything … even for his or her own medications, which the father forgets about and ultimately stops paying for. The sibling develops health problems of all kinds, possibly including psychological problems and/or substance abuse.
Meanwhile, the other sibling knows nothing about the verbal abuse the caregiving sibling is enduring, or the fear of dad falling down the stairs, the countless times the caregiver has to pick dad up off the floor, the mopping up of urine and feces, constantly putting out fires (sometimes literally, in the case of the parent with dementia being a smoker), corralling dad back inside when he begins to go outside to mow the grass at 2 a.m. … the nightmare goes on and on. Later on, the uninvolved sibling may come to know it all was true, but doesn’t want to acknowledge that. He still believes it must have all been his brother’s fault.
Often, the caregiving sibling is not the sibling in charge of the parent’s affairs. So when disaster strikes and the parent ends up in a facility, the uninvolved sibling with power of attorney launches threat after threat after threat at the sibling who already has been beaten down for years by the parent.
The resentment on both ends runs so deep, the battles often become legal. The non-caregiving sibling in charge of affairs feels the other sibling got a “free ride” for years and years. Depending on how much he or she believes the caregiving sibling got out of the deal, the deeper the resentment is.
The sibling who did the caregiving all those years is left shaking his or her head, picking up the pieces of his or her own life. Meanwhile, the caregiving services that he or she provided for so many years for $12 a day, plus free housing for many of those years, now costs dad $150 per day, possibly more.
Diane Carbo is the founder of CaregiverRelief.com. Diane is a registered nurse with almost four decades of experience. She specializes in elder care, including dementia care, as well as making the peace among feuding families.
“Some are told they lived in the house for free and shouldn’t have any of the estate,” Carbo told NBC News for a story about dementia ripping families apart. “Others are taken to court.”
I had my own conversation with Carbo on Friday. I asked her, “Can anything be done to avoid a court battle, even when it’s to the point of police involvement and siblings not speaking?”
She said yes, and it’s called a binding caregiving contract. At some point, the siblings can sit down and decide who is going to do what to maximize the best care for the parent at the lowest cost. It may involve one sibling making regular visits to the nursing home, maybe twice a day, and when emergencies arise (which happens a lot), in exchange for payment or rent-free housing in the parent’s home.
She said the most important thing when placing a loved one in a facility is to make sure they are getting true medical care, and that the family is able to visit the loved one as much as possible. Regardless of where a parent ends up, the way to ensure quality care is to make frequent, surprise visits.
She warned against assisted-living facilities.
“Here’s the problem with assisted living. Family members think they have coverage with all the medical needs, that somebody is going to be there all the time if something happens. That’s not the case,” Carbo told me.
Carbo said stories of injured patients lying in a pool of blood for several hours before being found are not unheard of. Certified nursing assistants sitting in the break room eating Laffy Taffy, fighting amongst one another or screaming at their boyfriend on their cellphone while one or more residents lie sprawled out on the floor — that’s not so unusual either. “People think assisted living is the end all be all, because then a parent doesn’t have to go into an (even more expensive) nursing home,” she said. “What they don’t understand is, it’s the most dangerous type of setting for anybody. It’s a social model, not a medical model. The type of care you’re getting is somebody who works at Burger King giving you your medicine.”
Of course, some places aren’t really that bad. But others are worse.
And the truth is, the same goes with nursing homes. She recalled visiting someone at a nursing home in Philadelphia. When she got to the man’s room, there was no soap, no towels and no wash pan. “The situation was so appalling I called the nursing supervisor. Their comment was that it wasn’t their problem.’”
Looks can be very, very deceiving when it comes to elder facilities, Carbo warned. “I don’t care what the facility looks like. It may have the reputation of being the very best. But unseemly things go on, and it’s not always the best of care.”
Ultimately, sometimes the state steps in and takes control when siblings can’t get along and there is proof of neglect. “Eventually, the nursing home goes after the (patient’s) house, so it’s good to hold on to it as long as possible as opposed to selling it. Once it’s sold, the money is easy to get.”
Coming up: Caregivers in America often die even before the person they’re caring for, statistics show. That’s because they stop taking care of themselves.
(Photo courtesy of Diane Carbo)