Jennifer from Hawaii

I moved from Hawaii to suburban Chicago 30+ years ago and worked in the non-profit field and raised my two children. After my youngest son began college, my annual trips back to Hawaii became more frequent and my husband and I realized that I needed the flexibility to spend more time with my mom, Yoko. First, I downsized my job to part-time hours and then, two years later, took an early retirement so I could spend 3 months with her the winter before last. I went back to Chicago for a few months before returning to Hawaii last August for what I thought was going to be a 3-week visit. I’ve been here ever since.

In the meantime, I became her full-time primary caregiver. My husband arrived in December to help as well. We’re here indefinitely.

Last fall, Yoko was diagnosed with mid-stage Vascular Dementia which has affected all areas of her brain. Her physical abilities have decreased markedly since then. Until last summer, she had lived independently in her two-story home and still drove. Now, she needs assistance with nearly all of her activities of daily living. Because of the dementia, her decision-making is poor and she is a major fall risk. She needs supervision 24/7, especially since she thinks she can still walk independently but can’t.
Taking care of Mom is a full-time job, including getting up several times a night to help her walk to the bathroom. This has been a challenge since I no longer get a full night’s rest. During the day, I’m responsible for broad duties such as her finances and healthcare decisions, as well as everyday tasks like cooking, cleaning, and medication management.

Most of all, my husband and I have become Mom’s interface with the world. We take each day one day at a time. I’ve learned not to make plans and instead see how she is on any given day. Flexibility is key.

Since I’ve been with her, Yoko has regained over 20 pounds, which she had lost in the previous year and a half. I enjoy cooking healthy meals and she enjoys eating them (even when she doesn’t remember what she just ate 5 minutes ago). Meals are a highlight of her day. After dinner, we often play a board game or cards.

I was getting very stressed out since we weren’t getting any kind of break. (Mom refused to attend adult daycare). Mom fell in March and we took her to the ER. After three days in the hospital, she was discharged to a rehab facility where she spent about 7 weeks. When she returned home, a caregiver began coming over every morning to help Mom. Without this respite, there’s no way that I could’ve continued in this role. We’re blessed to have a warm and loving caregiver who helps Mom get cleaned up for the day and cooks breakfast, exercises, cleans, and best of all, she’s developed a lovely bond with Mom.

Besides getting respite, I highly recommend learning as much as you can about your loved one’s medical issues and caregiving. There are a lot of online resources to assist in your learning. In addition, taking classes and learning from experts while meeting others who have similar challenges can help lighten your load. In our situation, the Alzheimer’s Association has been a fantastic resource.

While it’s hard to be away from my home, I wouldn’t trade it for the time that I’ve been able to spend with my mom during the past year. I know that these days won’t last forever and when they’re over, I don’t want any regrets. She’s been there for me and now it’s my turn to be here for her.