Sara Naomi Lewkowicz/AARP
En español | Stephanie Hanamaikai, 31, and her husband, Nick, live with her mother, Bruni Willekes, 66, who has Alzheimer’s disease, high blood pressure and prediabetes, in her parents’ house in Sparta, N.J. Stephanie’s father travels most of the year for work.
My mother is from Germany but has lived in the U.S. since 1983 and was fluent in English. Since the Alzheimer’s has taken over, she has reverted back to German and rarely speaks English. Growing up, we spoke English, German and Dutch in our home so it’s not a problem for me, but finding a caretaker who speaks German was difficult. Fortunately, we found one, because I have to work. I run a local deli and coffee roasting facility. My boss is my brother so I have a lot of flexibility; he understands there are days when I need to be at home.
She is well into the moderate stages of Alzheimer’s and needs assistance with everything — bathing, going to the bathroom, getting dressed, preparing meals, taking her medications, putting on the television or music — and I take her to doctor’s appointments. I’m pretty tech-savvy so I have access to the TV, Alexa in her room, cameras throughout the house and the alarm system from my phone. I want to keep her safe and keep an eye on her. I sleep with a baby monitor next to me at night so I can hear if something’s going on in her room. She has a desk in her room so if she gets up early she can color.
It’s good for her to get out so my husband and I take her out to eat or shopping as often as we can. She takes her dog for a walk at least once a day with the caretaker — he’s like her security blanket. We have a pool in the backyard, and during the summer she’s in it every day. She spends a lot of weekend days with my brother and sister and their families — we all live 35 minutes away from each other.
When she was diagnosed with Alzheimer’s in 2014, she had a lot of anxiety. She taught me how to knit when I was a child, so I picked up needles and yarn and we started knitting like madwomen. It keeps her hands and her mind occupied. Because she knits so fast, she would have 10 hats on needles at once. We started an Etsy page called Bonus Knits, where we sell the hats and donate the proceeds to Alzheimer’s research. These days, she needs a lot of assistance with her knitting but we’re still doing it.
Sara Naomi Lewkowicz/AARP
We have other positive moments. We watch funny shows together and she’ll laugh hysterically. Her laugh is really contagious. Her face often lights up when my husband walks in the room; sometimes they’ll dance together in the middle of the kitchen because it makes her happy. There have been times when she has put on a fancy dress over her pajamas in the morning and we have coffee that way. At a certain point you have to roll with it.
Overall, caring for her is a lot harder than I would have imagined. In 2016, she started having sundowners: In the evenings she gets restless and anxious. My mother was sweet as pie when I was growing up. When sundowners hit, a side of her came out that I’d never seen before. There were a couple of episodes where she got violent or she’d clutch her fists and yell; when she’s really angry she speaks English. This behavior was completely against her character, and it made me a bit fearful of her in the evenings so I told her neurologist about it and he prescribed a medication [Seroquel] that has helped enormously. It helps her settle down and she sleeps for a solid 10 to 12 hours a night.
I don’t know how many years it’s been since she said my name. I think she knows who I am but I’m not sure — I think in her heart she knows. When I was growing up, she was a stay-at-home mom so she came to every sports event and took me to my horse shows every month. She was a very good mother to me; she was there for me my entire life. I feel like it’s my duty to make sure she’s in good hands — and my husband understands that. I’m doing everything in my power to make her happy and make the best of a bad situation. I do this because I love her. I know that I’ll never have any regrets.
—as told to Stacey Colino