Remember Me Podcast Discusses Grief with AFTD Staff in Recent Episode

In a special bonus episode of the “Remember Me” podcast, AFTD Support & Education Director Esther Kane, MSN, RN-CDP, and Support Services Manager Sarah Lopata, MS joined hosts Rachael Martinez and Maria Kent Beers, both former FTD caregivers, to talk about grief and the FTD journey.
Everyone Experiences FTD, and Grief, Differently
FTD disorders are highly diverse in their symptoms, so living with a diagnosis is different for everyone. Similarly, care partners, family members, and friends of people living with FTD experience the journey differently, carrying varied emotions in response to the challenges they experience. As Kane notes on Remember Me, grief can manifest in a multitude of ways that aren’t always apparent.
“I don’t think that people always understand the amount of grief that they’re actually carrying,” Kane said. “I think it’s one of the hardest parts of about the journey. [People say] I’m really mad that this happened, or I’m really sad that this happened, and is that grief? Yes, you’re grieving.”
Martinez said that she was initially angry and frustrated when her father’s FTD symptoms began to show. Not knowing what was wrong, Martinez was “really upset, always – I’d go to bed upset and wake up upset.
“But looking back, that’s when…I knew what was going on,” she continued. “I knew he was changing, I knew I was losing pieces of him, but I couldn’t bridge the gap between that and feeling” upset.
Beers, meanwhile, speaks about getting a diagnosis for her mother – the finality of it, and the emotional weight it delivered.
“I remember the plastic chairs and just the look in the doctor’s eyes and…I just don’t even remember anything that happened after that moment, like walking to the car,” Beers said about the day her mother was diagnosed. “When the trauma started, the grief kicked in.”
It Helps to Have Difficult Discussions Early
FTD’s symptoms severely limit one’s ability to continue driving, working, traveling, or even participating in family events. Loved ones of the person diagnosed thus often find themselves grieving life plans, family milestones, or career goals that they know will go unfulfilled. Grief can also create (or exacerbate) familial conflict as dynamics and relationships change. For these reasons, Kane says that it is important for families to discuss how to approach FTD.
“If I was going to give any advice, it’d be to have these conversations [early] with your [family],” said Kane. “If you can, start to talk about how would [you] want to manage if mom or dad got sick. What would [you] want to do?”
It is also important to discuss as early as possible what the person living with FTD wants in terms of medical care and long-term legal and financial planning, since they will not be able to advocate for themselves as their symptoms progress.
The episode emphasizes forgiving yourself as you navigate the FTD journey. As family members learn more about FTD, they may feel guilty about their past frustrations with their loved one’s symptoms. For example, when Beers told her mother that she was pregnant, she responded by asking if they could go to the store, making Beers feel as if she didn’t care.
“Then we were talking to an expert at the Penn FTD Center…and she was like, your mom had PPA…she probably did not understand what you said to her,” Beers said. “Nobody wants that to be what happens when you tell your parent they’re going to be a grandparent. But I just didn’t know; I didn’t know the disease.”
Learning to separate the disease from her mother helped Beers contextualize her behavior. “It’s the disease,” she said. “It’s not your mom, because you know she cared.”
Click here to watch the full episode.
Are you navigating FTD on your own? Do you have questions, or simply need someone who gets what you’re going through? AFTD’s HelpLine can guide you as you navigate all stages of the FTD journey; contact the HelpLine at 1-866-507-7222 or info@theaftd.org.
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