The summer of 2015 was a very difficult one for Sharon Hall. As full-time caregiver for her mother with dementia, Sharon’s marriage to Rod was on the rocks.
Their relationship had been idyllic, with Rod being an incredibly romantic and caring partner, planning impromptu getaways, leaving her loving notes, and always creating fun in their home. From their marriage in 1997 to early 2014, their life together was joy-filled and prosperous.
But by August of 2014, Rod had begun making rude comments to people online, began having difficulties at work, and just plain “acting like a jerk.” It was then that Sharon discovered a sexting thread between her husband and a woman in MO, and everything began to fall apart. Although Rod discontinued the relationship immediately, and agreed to and participated in marriage counseling, it didn’t seem to be making any difference in their relationship. Sharon found herself living with a partner she didn’t recognize; her once loving, caring, thoughtful and devoted husband was gone, and she was considering divorce.
Once a capable printing engineer and talented garden enthusiast, Rod was becoming increasingly irritable, agitated, and explosive. His garden was going to ruin, and, although Sharon was unaware, he was also having trouble completing tasks at work. There were bad judgement calls, including one where Rod almost lost a hand due to placing it in a dangerous spot on the line. Some of the new hires at Rod’s job were taking advantage of him, and he was giving them money out of his pocket in a bizarre attempt to “pay them.” Outbursts in public were beginning to be the norm, and it seemed Rod was always angry at home, too. Sharon and Rod went to see psychiatrists and marriage counselors. At one point, they were even told that Rod was suffering from a "mid-life" crisis.
Sharon remembers, “I was trying to find a way to move forward with just my mom and me. My husband, Rod, had become someone I did not know. I assigned so many reasons to this, and none made any sense, but I said to myself, “People change. Maybe I have changed. Maybe I am trying to save something not worth saving.” Always a planner, I did what I do best, I planned. I sought help in therapy, I started saving in a separate bank account and carefully planned my escape.
“Then, October, 2015, my life changed yet again. I came across a post in caregiving.com, about a disease few know much about. My mother-in-law had this disease, so I thought, "I will watch this, even though I know about this." I discovered I actually did not know about it. I did not know the early signs, as I never knew my mother-in-law in the early days of her disease. After watching "It Is What It Is", a documentary about Frontotemporal Degeneration (FTD, formerly Pick's disease), my world stopped. The breath seemed to leave my body. My husband had not changed intentionally, his brain was degenerating in the very places that make him, him. Deep inside me I knew. I knew this was what happened. I had spent the last year and a half struggling through the worst part of my life, thinking that the man who was so tender and loving had turned into a beast, and maybe it had something to do with me.”
After that realization, the road to Rod’s correct diagnosis was fairly straightforward. Sharon found a teaching hospital not far from her home, and made an appointment for Rod, telling the neurologist of their struggles, and what she had found in her online research. After a battery of tests, including MRIs, a PET scan, genetic testing and extensive neuropsychological testing, the diagnosis was made: FTD.
Although adamant he could continue working, Sharon saw it was obvious the disease had taken Rod’s executive function, as well as his inhibitions. Rod was forced to stop working, stop driving, and go on disability. Sharon quickly learned, our healthcare and social service systems are ill-equipped to help families manage a young-onset dementia diagnosis. Having given up her income to care for her mother, losing Rod’s income meant Sharon needed to put together a plan, and fast.
Where once Sharon “the planner” had begun planning life after retirement with Rod, Sharon’s life soon became filling out forms, asking others to fill out forms, calling to follow up on form after form after form. They had to trade in dreams of travel in favor of financial planning for Rod’s future care. The chores piled up, and Sharon, like most early-onset caregivers, had to take care of it all. “I had to now admit that it was not laziness that made my gorgeous yard go to weeds, it was the apathy that is part of Rod’s disease. I had to hire people to do what he always did, fix things, take care of things, be there. With all the household responsibilities on my shoulders, I was a hamster on a wheel.”
Knowing she needed the support of others. Sharon reached out to every group she could find with the letters FTD, finding some nice florist shops, but there was not much out there regarding Rod’s disease. She knew she needed to find her tribe, people in the same situation. “I needed to talk. When Denise at www.CareGiving.com asked if I would like to start an FTD chat. I jumped at the chance. I went on social media and invited every person to join me every week. We have formed a "family," we support each other, listen to each other and try to figure out how to make it another day.”
Sharon's life mission now is to make sure that others facing this illness do not have to learn the hard way that this illness is not "just a personality change." Her chat group expanded to two nights per week, every week without fail, providing caregivers the support they need to make it through their “hair on fire” year, where a caregiver must complete the financial planning, find medications that help with behaviors, navigate SSDI or long-term care, and getting a handle on the anticipatory grief every caregiver experiences with a dementia diagnosis. She and members of her group coined a nickname for themselves: they are “The Redwoods,” after the majestic trees that don’t have large taproots to hold themselves in the ground but instead spread tendril-like roots out to their surrounding neighbors, connecting with them, holding them up, and sharing nutrients when one is under siege. In a similar way, the members of the FTD Chat also support one another, hold each other up, and sustain one another.
Sharon has also thrown herself into advocacy by educating herself about the disease, creating her own podcast, “Talking FTD”, contributing regularly to publications and support services like Caregiving.com, AARP the WellMed Charitable Foundation, Georgia Public Broadcasting and Roon. She has written several helpful articles and presentations, like “Rules of the Road for FTD,” “Guide Model for Dementia, Explained,” and “A Care Partner’s Perspective: FTD Care Takes a Village.”
Sharon acknowledges it was not easy to turn the corner and assign the hurt, the anger, the pain she had experienced at the hands of her husband to a disease, but that’s exactly the decision she made, once she realized her husband was ill. “It was such a strange relief to know my husband hadn’t just turned into a big, fat jerk, but heartbreaking to know he was now diagnosed with an incurable disease,” Sharon recalls. “I was going to do everything I could to help others make the same decision I did.”
Once she managed to associate all behaviors with his disease, it got easier to handle the outbursts in public situations. As dementia care partners, we have the difficult task of separating emotionally from the behaviors of dementia. This is particularly true in frontotemporal degeneration, which exhibits behavior that is socially inappropriate. All dementias can have behaviors that are socially inappropriate, and dealing with this aspect of dementia is extremely difficult.
Sharon explains, “The only thing that saves our sanity is to assign all behaviors to the disease. If we carry resentment toward outbursts, bad language, aggression, social disinhibition, etc., we reinforce our negative outlook on the dementia, and we become the perpetrators of stigma.
“Answering the same questions over and over and having to explain bad language or outbursts in public becomes embarrassing if we hold on to the belief that they are somehow intentional. Would we look scornfully at a person who is quadriplegic because they can’t open a restaurant door from their wheelchair? Of course not. We would run to open the door, give a smile, and say, “Here, let me help you.”
“When my husband has a public outburst, as he did in a trip to a grocery store where he got angry at the cashier and threw the bananas at him and started cursing, I simply turn around to any folks in ear shot and say “Sorry—dementia. I will take care of it”. If they do not have compassion, then that is their issue, not mine. If I can educate and explain the behavior and the associated dementia versus disease issue, I do; otherwise, I go about my business.
“Unless we stop blaming the person and start blaming the disease, our lives are full of stress and conflict. We have too many other stressors like finances, medications and help in the home to worry about taking on the stress of trying to control the spread of a degenerative brain disease. Let it go, reduce your stress and educate the public. We must go about our daily lives with no shame.”
Convinced that FTD caregivers everywhere should be the voice of FTD, Sharon pushes her Redwoods to be advocates – for themselves as well as their loved ones. “We need each other, for sure, we need to talk to those who "get it", but what we really need is to make OTHERS, outside of our FTD community, GET IT. We need to be a force to reckon with. We need to live life and not worry what others think of our loved ones’ strange behavior. We need to go out and EDUCATE the public. Some will listen, some will turn away, some will scoff, but we can NOT give up.
“Is it hard, damn straight it is. But without EACH of us educating those we meet and those we know, we will forever be just us, just talking to others who get it while society gets a free pass. Each of us needs to take someone by the shoulders and shake them, make them listen to the fact that all dementia is not your Grandma's dementia. This disease takes people in the prime of their careers, makes families split apart, devastates families financially, leaves little help for those who struggle every day to keep putting one foot in front of the other while grieving the living. We can’t allow FTD to win. We must RISE UP, we have to SHOUT, we have to get INVOLVED. We can't look to others to easily accept what we have a hard time accepting ourselves. We have to bang on the desk of people's conscience and be a part of the solution.”
