Caregiver respite isn’t just about taking a break from the stress of daily care routines and responsibilities. Most importantly, it’s about putting yourself first, and making space for your own passions, so that you can also be the best care partner for your loved one.
For Sharon Hall, care partner to her husband living with frontotemporal dementia (FTD), that space for caregiver respite came in the form of advocating for others living with FTD.
Her advocacy journey came about by accident after she and her husband started getting help.
“My husband and I started like a lot of couples living with frontotemporal dementia started: with counseling,” she shared. “A lot of us begin our FTD journey with suspected marital issues. Counseling doesn’t usually go very well, because sometimes the person with FTD doesn’t engage at all.”
At that time, Sharon had also been caring for her late mother, who was living with vascular dementia. “I happened to be on an app for caregivers, and I went on to see if there were tricks of the trade to help me care for her,” she said.
“The more engagement I had with people, the more I used that advocacy label. I never said no, and one thing leads to another whenever you say yes.”
SHARON HALL
“Then, someone posted a video from the Association for Frontotemporal Degeneration: AFTD (AFTD) on the app. I opened it, and it was like someone smacked me in the head,” Sharon recounted. “I said, ‘Oh my goodness, this is what my husband has. It was exactly what his mother had.’ I really dug in and educated myself after suspecting it was FTD.”
The path to diagnosis
Rod’s mother also had FTD, but his family never talked about the behavioral manifestations in her condition. “My husband didn’t live in the area, and he never got to observe her behavior. Neither did I know there were behavioral factors at play,” she said.
While people with FTD are often misdiagnosed at first, Sharon and Rod’s path to his diagnosis was not as fraught as most. “Most physicians don’t know about FTD. I didn’t want to go through a process of elimination; I wanted a definite look by a facility that knows FTD,” she said.
It took Sharon many months to get an appointment with a physician who knew about FTD, and another month of consultation and testing before they arrived at a diagnosis.
Arriving at an FTD diagnosis is most often a difficult journey, she says. “FTD is a clinical diagnosis. There are no biomarkers. Neuropsychological examinations will show that there are executive functioning deficits, but their brain scans can appear normal. There isn’t even a deterioration of the frontal lobe in early stages; sometimes, it only manifests well into the disease. It’s really about eliminating every possibility.”
After a month of consultations and testing, Sharon and Rod opted for the probable, and finally had an as-definitive-as-it-gets diagnosis of FTD.
Sharing is caring
Around the same time Rod was diagnosed, Sharon gathered everything she’d learned about FTD and began reaching out to communities of people undergoing the same struggles. “I wanted to get the word out about FTD. I started a chat so I can talk to others in real time who are also caring for people living with FTD. That chat has been active for five years.”
She wrote a blog that was picked up by Huffington Post and it went viral, that was when the whole advocacy took off.
Determined to educate more people, Sharon said yes to every opportunity. “The more engagement I had with people, the more I used that advocacy label. I never said no, and one thing leads to another whenever you say yes.”
Today, Sharon is an active advocate for FTD and younger onset dementia, sharing her knowledge and experiences proudly with her bright purple hair which gets a conversation going for her to explain FTD.
She contributes to the Georgia Alzheimer’s & Related Dementias State Plan work group, and leads an AFTD support group monthly. She has also spoken in various webinars and has been quoted as a subject matter expert witness in many articles on dementia.
One might wonder how Sharon balances caregiver respite with advocacy.
“I get asked that a lot,” she said. “My husband is still fairly functional. Most of my advocacy happens at home. It isn’t that difficult for me to be an advocate, especially now that virtual meetings have taken off so much.”
Running a tight ship
Prioritizing self-care has also been integral to her journey as an advocate. “Prior to the pandemic, I would take two to four days off every three months to get away, while my son took care of my husband. Caregiving can take its toll. In prioritizing self-care for caregivers, it helps to have your own interests. I enjoy telling people about FTD and raising awareness. It’s my own way of finding caregiver respite.”
Creating structure for her loved ones also helped Sharon to find caregiver respite.
Keeping a routine was also important in keeping Rod stable. “We get up at the same time, we have coffee together, he’ll do a Joygage game or watch a video, we’ll have breakfast, and then it’s time to get dressed for the rest of the day,” she shared.
She also established two strict rules for her loved ones from the very beginning. “They called me The General, I called them The Twins,” she said. “If they wanted to do something, first, it had to be safe for them, and it had to keep my sanity intact. If it would make me lose my sanity, or if it put them in danger, then it was a no.
Sharon points out it’s easier for men to get more accolades for being good care partners. “They aren’t beset by the same expectations, or held to the same standard.”
Establishing rules
Sharon recalled one time when her husband refused to take his meds. “He took off, because he didn’t want to take his meds. He walked out the door, and I let him go. I watched him walk further until he turned back and then asked why I didn’t come for him,” she shared. “I told him, ‘If you want to leave, then leave, but if you don’t take your meds, then there’s no staying here.’”
This, she says, helped to establish the fact that she was not going to give in to every whim he had. “It has to be my rules, because we have to run a tight ship here,” she says. “It wasn’t that I was unkind. I needed time for myself and to have a life of my own. And that’s the way I was going to get it.”
Sharon still lets Rod have his way sometimes but within reason. “I do give in sometimes. He needs to have a life as well. There’s a lot of life to be lived between diagnosis and death. They’re still people, they still need interaction, and they’re still allowed to want things. Rod grows an organic garden every year, with help from neighbors. That is his passion.”
Care and inequality
Sharon says there remains to be a lot of inequality between how men and women are perceived as caregivers.
“There are many wonderful men and women who take excellent care of their loved ones. However, the experience of women care partners is different, especially with FTD,” she said.
Because FTD typically begins at a younger age, Sharon points out that working women who make ways to find caregiver respite or choose to put their spouse in care facilities are looked upon more negatively than men who choose that option.
“When a man makes that choice, people will say, ‘He’s still working’. But isn’t she still working, too?” she posed. “People will tend to think that because you’re a woman, you have to be the caregiver.”
Women are still perceived to be more inclined to care for people, but Sharon says it’s not necessarily true. “There are just as many women who aren’t equipped to care for people living with dementia as much as men.”
Still, caregiving is done mostly by women, of all ages. “There are women in their 30s who leave their jobs to take care of their loved one, and sadly, this is a trade-off that is normally expected of women,” she said.
On the other hand, Sharon points out it’s easier for men to get more accolades for being good care partners. “They aren’t beset by the same expectations, or held to the same standard.”
The cost of unpaid care
The fact that most care work is unpaid makes the divide even wider for women who struggle to fit societal expectations and fulfill their own wants and needs while caring for their loved ones.
“Caregiving is unpaid labor. An hour of care costs $25, and if you’re going to spend four hours doing errands without your loved one, for example, that’s already going to cost you $100,” Sharon said. “What’s worse, if you have to leave your job to care for a loved one full time, you won’t get a salary for the kind of work you do as a caregiver.”
More often than not, women caregivers will find themselves between a rock and a hard place. “It’s very expensive to take care of someone living with dementia. Treating someone with Alzheimer’s Disease will cost a family an average of $60,000, and for FTD, it’s $120,000.”
Helping the helper
When the burden of caregiving becomes too much, Sharon says it’s very important for care partners to ask for help.
“You can’t do dementia care alone. No one can. Caregiver respite is an important part of the care process. If you try, you’re either going to burn out, or you’re going to die,” she cautioned. “Dementia caregivers die at a rate that’s 40% higher than their peers. Also, 25% of caregivers die before the person they’re taking care of does. A lot of that can be chalked up to people trying to do this alone.”
Sharon says reaching out to her community greatly eased the burden of caregiving. “When Rod was diagnosed, I wrote my neighbors a letter telling them about what he’s going through, and what could happen. After that, everyone said, if there’s anything I can do, let me know.”
She took the opportunity to send them a list of things they might need. “I said, ‘If you have time, please help us’. People will come around if you tell them. Any time anybody says, ‘Is there anything I can do?’, take advantage.”
Caregivers must remember that people are willing to help, says Sharon. “You have to get over that hesitation to ask. Let’s say, maybe you don’t want to impose. But people have free will. They can say no, and I’m not going to hold it against them. I know they have lives too. And we make sure to give back. In our community of care, my neighbors and I know that we have each other’s backs.”