Rod Hall clearly recalls his last week of work as a bindary manager at a printing company.
“The week before, I had almost ruined a very expensive job because I almost missed a step. The following Monday morning I was doing the same type of job and I missed that step again and almost lost my hand,” Rod remembers. “I caught myself at the last moment. I left the equipment, found my manager and said ‘I’m sorry but I have to walk. I hate to leave you in a lerch but I almost lost my hand.’ I almost didn’t get home either – I had difficulty driving because I was struggling to think and function.
“That was the last day I worked – and drove. The dementia just took it all away from me.”
That was in 2016. Rod was only 63 – not the typical age people think of when they think of those with dementia.
“Frontotemporal dementia is so different. It’s a personality change. It affects the frontal and temporal lobes, a person’s judgement, empathy – all the things that make you who you are. It can cause sudden outbursts of anger, cause people to not like to be touched, and more,” said Sharon Hall, Rod’s wife. “It’s very hard to get a diagnosis because people can be as young as their 20s and have these symptoms but it gets diagnosed as a mental health disorder. You usually have to go to a teaching center, like Emory here in Atlanta, to get diagnosed.”
At the time of Rod’s diagnosis Sharon’s mom – who had vascular dementia – was also living with them at their home in Forsyth.
“I had been working but quit not long after she moved in. I thought I could do it all but realized it wasn’t feasible,” Sharon said. “So when all that happened with Rod, I was able to care for him as well as my mom.”
Over time, Sharon realized she needed some extra help and found an adult day care center for Rod and her mom.
“They went to a social model center that had a professional running it but volunteers doing everything else. They told me they understood FTD and how to help Rod, but they didn’t. I had a lot of teaching to do, because they just weren’t trained for it,” Sharon said. “Rod’s pretty cognitively aware, which is not like most people with dementia.”
Eventually a friend told her about a new center, Peachtree Christian Health.
“She told me I was going to be impressed, and I didn’t believe her. I’m a very active advocate for FTD on the state level, I run a message board, a podcast and more, and I’m extremely hard to impress,” Sharon said. “I thought it would just be a fancy place that didn’t do what I wanted them to do anyway. But I went to an open house and realized it was definitely not your normal social model. And when they told me they have a nurse there all the time, their staff are trained on medical as well as dementia needs and more, I realized it was different.”
Rod started attending PCH in 2019 (Sharon’s mom had passed away at that point). For Rod, having a place he enjoys going to has made a world of difference.
“The first place I went to, once you walked in the door you didn’t go out. It was rare they had any outside activity. But here at PCH we have a courtyard in the middle and anyone can go in and out,” Rod said. “We have a bunch of raised beds and so I do a lot of gardening and I’ve been working on the blue bird box that now has four eggs in it.”
For Sharon, having skilled care for her husband and a place where he’s happy and safe is part of what she loves about PCH.
“The level of care and skill at PCH means everything to me.When people aren’t informed, don’t listen to me and don’t know how to handle Rod, it can get ugly fast. But from the beginning, PCH listened to everything I said. They tell their staff, ‘Rod will tell us what he needs’. PCH is very accommodating to everyone’s individual needs. Rod’s never been forced to be part of the crowd; he has his own table and if he’s having an anti-social day he knows there’s a room he can go to to decompress. They really do meet his needs, and that’s important to me.
“Plus, PCH gives me the opportunity to have time to myself. I know Rod is well taken care of, I know he’s not home alone getting into mischief. That gives me piece of mind to get my things done. I can make doctor appointments and can relax because I know he’s well taken care of and not home alone, like the movie,” Sharon laughed. “In fact, before the pandemic I was pretty good at spending two or three days away with a friend every three months because I need the break as a caregiver. Being ‘on’ 24/7 takes a toll. So I would go away and my son would come take care of Rob and being at PCH allowed my son to still work during the day, which is a big thing for us as well.”
Rod loves joking around with the staff at PCH, listening to Reverend E’s devotionals, being able to sit and read and also work in the garden. Before COVID he also loved baking in PCH’s kitchen.
“The fact that PCH is a medical model, and he can stay there as he progresses and they will handle the progression – they will handle incontinence, additional meds, whatever he needs (all the things a social model won’t) – means a lot to me,” Sharon said. “My goal is to have Rod home forever and PCH is helping make that happen.”