Being a caregiver isn’t easy, but it’s even more difficult when your “patient” is someone who has cared for you your entire life. According to Cassandra Jones, whose mother Deana was diagnosed with semantic dementia at 50, the sudden role reversal can be jarring.
“It’s hard because she’s still my mom — in the beginning when she could communicate better, she would make comments to me like ‘I never used to say those things to my mom, I never used to do that to my mom,'” Cassandra said. “It made me feel bad, like I was being disrespectful to her, because she’s my mom and I’m treating her like a child.”
Sometimes, Cassandra is forced to take things away from Deana or not allow her to do certain things — activities as seemingly benign as walking around the block alone — in order to keep her safe. “It’s just hard,” she said. “I feel for her having to lose that independence.”
That extends into more intimate areas, too. Though she shares caregiving duties with her father, her sister, and volunteers from their church, it’s Cassandra’s job to shower her mom.
“The first time that I had to do it I felt some anxiety about it; I wasn’t quite sure how to go about doing it, because I knew she wasn’t going to just cooperate. I thought, ‘Oh my gosh, I’m going to have to pull down my mom’s pants and pull off her shirt.'”
“I can’t even put into words how that feels to have to do that to somebody, and to not give her any choices. I felt guilty, but I’ve kind of resolved that guilt because I know that it’s necessary.”
It’s not just physical care that takes a toll.
“It’s all so hard, watching her revert back to a child,” Cassandra added. “Lately she’s been having these crying spells, and I don’t really understand what it means. For a long time, she had a lack of empathy; she showed no emotion over anything. I haven’t seen her cry since before she was diagnosed, when her mom died, and I only saw her cry one time.”
“Lately, she’ll just be talking about something — although we can’t understand a lot of what she’s saying these days — and she’ll just say something and then her voice will crack, and she’ll tear up, and that’s heartbreaking to me to see that and to not know what she’s crying about.”
“There’s this feeling of helplessness. You don’t know how to help them or make them happy.”
Cassandra perseveres for one big reason: love.
“Learning about what was to come, what was in store for us, was kind of hard. I just thought, oh my gosh, how am I going to do this? I was reading about people becoming incontinent and having to change their diapers, and I went ‘I can’t do that, I can’t change my mom’s diapers!'”
“Then I just decided that as hard as this is for me, it will be even harder for my dad. This is the love of his life — they grew up as next door neighbors when they were 13 or 14 years old and have loved each other ever since.”
There have been rough spells, but Cassandra has never thought about quitting.
“I do what I have to do. That’s not to say I haven’t had times when I’ve just kind of broken down and cried…but it’s never crossed my mind that I can’t do this or I can’t take care of my mom, because I love her.”