Sibling v. Sibling: A Binding Caregiving Contract Can Keep Drama Out of Court

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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)

 

Why FTD is so hard to talk about – my dad’s story

 

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Originally published Jan. 5, 2015 on Healthline Contributors. Reprinted with permission. This piece had more than 20,000 page views on Healthline Contributors as of Nov. 1, 2016. My dad died in September 2015.

My dad has a lot of difficulty getting the words out. I’m having a problem getting the words out, too.

A neurologist diagnosed my dad with frontotemporal dementia, also known as FTD, or Pick’s disease, a year ago. Shortly after that he was placed on hospice care in the memory care community, where he already had been living since July 2013.

FTD occurs when the frontal lobes of the brain begin to shrink. Little is known about what causes this, but people who have it often have an abnormal amount of a certain type of protein called tau in the brain cells.

When the lobes begin to shrink, it impairs what is called “executive function.” A person with FTD cannot understand how to even begin a task, even if they know what the end result is.

I’ll give you an example: I went to see Dad the other day, and the hospice worker was down in my father’s apartment preparing him to go upstairs to the great room. So I went upstairs and waited so they could do their thing. I know this is not an easy daily task for them. If I’m there, dad screams, shakes his fist, etc. Honestly, sometimes I’m amazed how they do it. And so grateful.

Soon the elevator doors opened, and the hospice worker wheeled out Dad. He had this extremely strange look on his face (see photo with story). I asked him what was wrong, but he would not respond. This happens a lot with people with FTD. Sometimes they don’t speak. In end stages they usually don’t speak at all. The hospice worker told me he got mad at her while she was brushing his teeth.

So for 25 minutes I sat with him in the dining room. He had this sullen look on his face and would not speak at all. I was very upset. Finally, something occurred to me. I said, “Dad, is there something in your mouth?” He just looked. I handed him a cup and said, “Dad, please spit out whatever is in your mouth.” I showed him how to spit.

And he spit out the toothpaste.

He had forgotten how to spit out the toothpaste. This is executive function.

I, on the other hand, am having a tough time spitting out the words, because when you write about your experiences with this disease, you want to be real, but also diplomatic. Let’s put it this way. FTD has a way over time of creating hurtful feelings among networks of people. By the time things get really bad, or to a crisis situation, the hurt can explode due to a lack of understanding about the disease. Like throwing onion rings into the fryer.

 What is FTD?

Here’s a little bit of background about FTD that you can find right here at Healthline.com. A link to this information is below.

There is no cure or treatment for FTD. One of the huge problems is that FTD isn’t always easy to diagnose. Symptoms can develop slowly over time, or onset and death can come within two years of diagnosis, or less. My dad’s symptoms very much developed over time, and only now do all of the pieces fit into something that has puzzled all of us for many years.

There isn’t a test for FTD. Neurologists make determinations based on a patient’s medical history, interviews with family members, magnetic resonance imaging (MRI), computed tomography (CT) scan and position emission topography (PET) scan. The imaging techniques help a doctor rule out other problems such as tumors or stroke. They don’t necessarily confirm a diagnosis of FTD.

My dad landed in a facility in 2001 with symptoms sort of similar to what’s going on now. At that time I moved back to the Quad-Cities from Los Angeles, and he was taken out of the facility and rebounded. He did much, much better for several years before beginning to go downhill again in 2006 or 2007.

My dad doesn’t have Alzheimer’s disease, but that was what doctors initially thought. Even now when people ask if he has AD I sometimes just go along with it and say “yes” because I don’t want to bother explaining FTD. But those of us going through this must explain it.

FTD is different from Alzheimer’s in that it doesn’t always affect older adults, it doesn’t always impact memory the way Alzheimer’s does, and it often kills a person much more quickly. So Dad initially was diagnosed with Alzheimer’s. Talk about a disease that carries stigma. I couldn’t even say it in the presence of some family members. We referred to it as the “A word.”

You’ll find that when someone is diagnosed with dementia, the layers of denial that others have wrapped themselves in can be many layers thick. Again, like a stinky onion.

With FTD, there’s not a lot of stigma because it’s not something you hear about a whole lot. Most people don’t even know what you’re talking about when you say FTD, I’ve found.

Drama in All its Ugly Forms

People often joke about the amount of drama I’ve always had in my life, and I’ll admit to an extent to being a “drama queen.” But people who live with someone who has FTD will tell you the disease is all about drama.

It’s common for patients to display inappropriate outbursts. There is no couth filter on a patient with FTD. Racial slurs, sexual aggression and even violence are possible. The stress placed on a family dynamic can be insurmountable. Patients with advanced FTD usually require 24-hour care in a facility at some point. It’s truly more than one person can handle, I firmly believe.

In my FTD support group, I’ve heard a few stories of spouses who get divorced and then remarry. This struck me because my parents did the same thing. In a recent program about FTD on the Discovery Network, a woman talked about remarrying her husband after he explained he knew something was wrong with him. He needed her, he said, and she felt bad for him.

My parents remarried just weeks after my dad was approved for Social Security disability. He came back from the renowned Mayo Clinic diagnosed with a psychiatric problem (but not FTD … in fact, it was a rather obscure diagnosis). This is when he was in his early 40s. Today he is 76.

I’ll spare my family the embarrassment of sharing the details, but we had lots of fighting in our house through the years. Even the kind where the police are called. I hear stories every day in my FTD support groups that are replays of what my own family went through, right down to children sometimes being afraid of their parents with FTD. It’s heartbreaking.

Tick-Tock: My Dad’s FTD Timeline

What’s even more heartbreaking is watching a person with FTD attempt to hold on to their dignity as the disease slowly destroys them. My dad has been incontinent nearly two years and now is unable to walk or even stand without help. He still speaks, but it’s starting to be less and less. Some days he can feed himself pretty well; other days he has a lot of difficulty.

I already had written the first paragraph of this column – about dad not being able to get the words out – when on Friday he blurted out, “I can’t make the words anymore!” after stuttering a long time while trying to tell me something he obviously thought was important.

During the past couple of years dad’s FTD has progressed to that. It began with a sharp downturn that began a few years ago. Among the things that were happening:

*  A sudden inability to manage his money or use a telephone.

* Sitting in front of Spanish television for hours when he doesn’t speak a word of Spanish.

* Complaining about loud music coming from the church across the street during times of total silence.

* Urinating repeatedly on the bathroom floor.

* Constant falling.

* Filling the coffee decanter three times (or more) when making coffee in the morning, and then letting the coffee drain all over the floor, and eventually down into the basement where I slept.

* Throwing burning cigarettes into the trash can. I put out two fires shortly before he went into the facility.

Prior to all of that, there were symptoms I and everyone else apparently chose to ignore. He would ask the same questions over and over. No matter what you’d say to him, the answer was “Huh?” This is because people with FTD lose the ability to understand language.

I took him to get hearing aids, and the audiologist said there was some minor hearing loss. But even before that, dad’s primary care doctor had told my brother it’s not that your dad can’t hear, he doesn’t understand what you’re saying. When this all went down two years ago, that didn’t make a lot of sense to either of us, which is why I took him to the audiologist anyway. Now it all adds up.

A Time to Forgive, to Forget and to Educate

Before moving in with dad a year before he went into the facility, I’d check on him several times a day. I’d go in the mornings before work and he would say the meanest, nastiest things to me imaginable. He often criticized my work, for which I am very proud. It hurt me deeply, and for many years.

I would go into the office saying horrible things about him. I had no idea he had a rare disease – I just thought he was a mean person who had become even meaner with old age.

The diagnosis, therefore, was a game-changer. I’m sure he did send my mother over the edge (she ended up divorcing him a second time before dying of breast cancer in 1995). And I went through an initial phase of extreme guilt after his diagnosis. I frequently screamed right back at him when he would treat me so poorly.

And there’s so much more to this story that I’m just going to leave out. He’s been through enough. We’ve all been through enough.

People who live with FTD find themselves constantly pointing fingers – and having fingers pointed at them. Instead of pointing fingers, maybe we all should at least find solace in the validation of the diagnosis. The pain so many of us have endured is in fact no one’s fault – above all, not the patient’s.

Read my Healthline News story on the NIH funneling dollars toward FTD research by clicking here.