Turning the tables. If you’re fortunate enough to live into adulthood and still have your parents in your life, it’s inevitable. Actress Kimberly Williams-Paisley experienced it when her mother Linda, then 62 years old, received a primary progressive aphasia (PPA) diagnosis in late 2005. PPA is another uncommon form of dementia, though it differs from Alzheimer’s, and all of a sudden Kimberly found herself taking care of her mother.
Kimberly writes openly about the highs and lows of the last ten years—not just for her mother, but for the entire family—in her new book, Where the Light Gets In: Losing My Mother Only to Find Her Again. He and others like her were interviewed about what it’s really like when the parent-child relationship is turned on its head.
Kimberly Williams-Paisley, 44, Tennessee
Together with her sister, brother, and father, Kimberly and her husband, country music star Brad Paisley, have weathered emotional storms with their two young sons. Kimberly tells WomensHealthMag.com that she is working particularly hard to let go of her guilt.
She claims, “Guilt doesn’t really get us anywhere.” It’s easier some days than others. Many caregivers feel this way: I could’ve done more. I ought to have taken more action. I ought to have questioned my mother more. forced her to record information. seized the car keys from her earlier.
It may be particularly difficult for the sick person’s spouse. With regard to her father Gurney, Kimberly claims, “This almost killed my dad.” “Dad cared for my mom full-time for years, risking his own health in the process. He wished to be the one who could take care of everything for her.
It was time for her mother to move into a memory care facility after six years of sharing the care between family members and some in-home assistance. The changeover was a bittersweet one. She was no longer a physical threat to us, which was a huge relief, according to Kimberly. We felt liberated after the immediate burden was lifted. But because my mom still had some awareness, it was one of our darkest days as a family.
The day-to-day tasks leading up to that transition, according to Kimberly, were a complete juggling act. She claims, “I was constantly on edge, caught between parenting her and ensuring she was safe, and parenting my kids and ensuring they were safe.”
Carefully undoing a mother-daughter relationship is necessary. Kimberly claims that accepting the person in front of her brings her peace rather than wishing for her mother to be someone else. She explains, “I have to let go of that ghost of my mom as she used to be when I’m with her now and just embrace this new person. “That has been freeing. But it’s still happening right now,” she continues. The worst, I’m afraid, is yet to come.
Megan Linane, 40, Illinois
Mild cognitive impairment was identified in Megan Linane’s mother at the age of 70. Since then, her illness has advanced to a severe stage of Alzheimer’s, the kind where she might be able to use the restroom but might then leave because she doesn’t know what to do with the toilet paper. This occurred four years ago.
Helping her mother maintain her dignity in the various degrading circumstances she encounters is one of Megan’s many responsibilities as a member of her mother’s caregiving team. That is undoubtedly Megan’s cloud, but here is the bright spot: She claims, “My dad and I have gotten really close.” “He relies completely on me, and I completely depend on him.”
The majority of the caregiving is handled by Megan’s father, who still resides with her mother in their home. She says, “I try to take as much away from him as I can. But Megan frequently has to make difficult decisions because she has two children, who are 12 and 9 years old. She admits that there have been times when she had to miss soccer matches because her mother was her top priority. “I’m in command. I miss a portion of my child’s early years because I must be with my mother.
Megan occasionally brings her mother to sporting events in order to please everyone. She may inquire about the child we are watching fifteen times, and that is acceptable, she says. “We like the green team, Mom,” I merely say.
However, Megan can feel the toll that letting go of her mother’s past self is having on her.
She confesses, “There are times when I cry.” The worst times are when I still require my mother. I want to share and tell her about a problem I’m having, but I can’t.
Megan occasionally worries that she is neglecting her own needs. She makes an effort to deal by writing, walking, and providing “fun momma” for her own children. She says, “Others can go out with friends, but I spend my spare time with my kids on the backyard hockey rink.” You have to make choices, and it’s difficult to learn to say no.
Choosing what to do next is a challenge the family faces even though Megan’s father says it will be necessary to place Megan’s mother in a care facility when she is unable to recognize him. We simply never know what the next day will hold, and we never even know what reality is all the time, she adds.
Elizabeth Wolf, 35, New Jersey
Elizabeth declares, “I don’t trust anyone to take care of my parents the way I do. I’m not a martyr or a saint; I just made a decision based on what I felt in my heart to do. She and her husband were given Alzheimer’s disease within a few months of each other in 2010, so they quit their jobs in Vermont and moved into her parents’ New Jersey house. Her father is 82 and her mother is 65.
Although her mother is 17 years younger than her husband, her illness advanced much more quickly. Now, Elizabeth says, “My mom is in the late stages and my dad is in the middle stages.” He still understands language and is cognizant enough to recognize that something is wrong with her, but he is unaware that he also suffers from the condition.
Elizabeth is the primary 24-hour caregiver for her parents. She explains, “I act as their parent: I give them instructions on what to wear, I dress them, I feed them, and I take my mom to the bathroom, put her in the bath, and wash her.
When she considers the bigger picture, she feels as though she has been given a gift even though she describes her days as being wild, unpredictable, and exhausting.
She says, “I have to keep in mind that this is the disease, not my mother. “As a result, I’ve begun to take on a nurturing role, which has unquestionably changed our relationship. My mother and I didn’t get along until she developed dementia. She is now more loving and affectionate than she was when I was a child.
Even her father appears to be showing his wife more affection. Elizabeth says, “He loves her, he kisses her, he holds her hand, and most of the time she doesn’t respond.” It causes him heartbreak.
Elizabeth works as hard as she can to maintain her parents’ emotional health when she isn’t attending to their physical needs. That requires her father to always carry a $20 bill in his wallet. He still has some sense of self, and I want to help him maintain as much dignity as I can, she says.
She claims that because things change every day as a result of their illness, she is now incredibly present in the moment. She has also come to the wrong conclusion about the importance our society places on youth and productivity. Your value disappears once you reach an age where you can no longer make a meaningful contribution to society, the author claims. And I simply disagree with that. I’m allowing them to live the lives they selected.
Need details on providing care? Nine pages of Kimberly’s book, one of which is for caregivers, are devoted to some significant resources that her family used—or wished they had used sooner. Check out caregiveraction.org, caregiver.org, and archrespite.org, three of the most helpful websites.
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