Often, the challenge for caring with those with forms of dementia is trying to understand the loss of time and context of one’s mind. Dasha Kiper is consulting clinical director of support groups at CaringKind (formerly the Alzheimer’s Association). She joins host Krys Boyd to discuss the disconnect between the healthy mind of a caregiver and the ailing mind of a patient, and the counterproductive ways we try to help but cause harm instead. Her book is “Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain.”
Blog Post: It’s normal to have complex emotions when taking care of someone with dementia
— By Brianna Flores, Think Intern
Having a loved one who is suffering from Alzheimer’s, or other forms of dementia, not only takes a toll on their mental health but also on yours. This is especially true if you are going to be their main caregiver.
“It will turn your world upside down that most people, understandably, want to cling to, to normality, to the plans that they had,” says our guest, Dasha Kiper. “Very rarely did people plan for their retirement to be a caregiver for somebody who has Alzheimer’s.”
Thinking, reasoning, and remembering are cognitive functions that patients with dementia start to lose as their condition progresses. They often begin to forget the little things, like what they ate for breakfast. This may evolve into forgetting their environment, who they are and even those around them.
Dementia patients often deal with mood swings since their emotions are out of their control. Sometimes the caregiver can get frustrated and lose patience at the sudden changes of emotion.
“[Caregivers are] with the person the whole day catering to them,” says Kiper. “Then they come home, and they get these messages, ‘You’re never around, you don’t love me, you’re abandoning me.’ So, it really does feel like gaslighting… and nothing ever feels like it’s enough.”
Understandably, this can make the caregiver upset and feel guilty for feeling that way. After a while, they start to feel bad about how they reacted. Caregivers can even start to think that it would be best if their loved one would pass away to end the suffering that they are enduring.
“It might sound to the outsider that it’s cruel,” Kiper says. “But when they say that, they’re not just saying that for themselves. They’re saying it for their mom because they see the indignities that come with this disease.”
Kiper explains how loved ones with dementia feel scared not knowing what is going to happen because the disease interrupts their ability to think. They can’t control their emotions and it becomes unstable for them to live.
She often advises people to take a moment to breathe and laugh – and to also step into the shoes of the loved one affected.
“There’s so much absurdity,” Kiper says. “And it also brings out absurd things in you because once you go through a scene over and over and over again, you know, you find yourself arguing with your mom about a UFO.”
To learn more about the experiences of a caregiver, listen to the podcast above.