Stepping inside your loved one’s shoes

First, a brief personal history. I was raised as the youngest of three in a highly competitive household. I didn’t see the value in competing against others. Instead, I worked at bettering my own life and career. Opting to leave home at age 18, I focused on my education. After graduate school, and still in my 20s, I consulted for corporate America, helping employees improve productivity through stronger collaborations and task efficiencies. Fast forward to my mid-30s: My career is taking off, and my father is also showing increasing signs of dementia. I had to choose between ignoring him and stepping up to care for him.

Throughout our lives, we learn lessons. For me it was learning how to care for a dependent human being. My husband and I don’t have children, unless you count four cats over 25 years and five Godsons. Faced with few options at the time, we decided to care for my father and moved him from his home in Wisconsin to our California home.

Who Me – a Caregiver?

Having my father in our home initially felt like two buddies catching up after 19 years apart. We cruised California’s roads in my Miata convertible. On weekends, my husband, father and I drove to the mountains, walked through California’s poppy fields and enjoyed the ocean waves along Ventura’s Harbor or Long Beach. My father’s dementia symptoms were mild at first and I often thought he might return to his Milwaukee home.

Me – a Clueless Adult Child

I realized I was out of my element. I needed to learn a lot – and fast. Except, I didn’t even know what questions to ask. Fortunately, a former co-worker and dear friend guided me while she cared for her father who had dementia.

One thing I couldn’t figure out was why my father was declining while living with us.

He was eating homemade meals three times a day. In Milwaukee, he’d miss his home-delivered meals because he wouldn’t hear the doorbell or the knock on the door. He enjoyed being showered with attention during our social events and even some business gatherings. In Milwaukee, he went to community events alone and returned alone. That’s how he lost his car. He forgot he drove and returned home by bus. In our home, he slept in a warm, comfortable bed with clean flannel sheets and a down comforter. I don’t want to even guess the last time he changed his bed sheets while on his own. It may have been years! Same with his clothing. One year, when I visited him in March and then in August, I discovered he had not washed his shirt and pants at all. While he lived with us, he had on new clean clothes and showered every other day. The hair stylist even came to our home to cut his hair.

Not having a clue, but being curious (a trait I inherited from my father), I asked a lot of questions. I learned that his dementia was progressing because he felt safe with us. He was relaxing and not trying so hard to find his way in the world. PHEW! Despite our efforts to care for him the best we could, he was declining. A bittersweet reality.

The Diamond Tip for Caregivers

I realized then that to be a successful caregiver (just to survive and maybe thrive), I’d have to learn more about my father’s disease. I read as much as I could, participated in online and in-person support groups, and asked a lot of questions of the experts and primary caregivers. The layers of knowledge built upon one another until I was able to enter his world and care for him.

During those stressful moments, when he woke me for the third time in one night, I wondered what it would be like to be confused. What would it feel like to want to go to “work” (adult day care) when it was still dark out at 3:30 a.m.? What would it feel like to wonder when my spouse is coming home (“Do you know when Ma is coming home?”), even though she died four years earlier?

When you learn as much as you can about your loved one’s disease or illness and then place yourself in his or her shoes, a pivotal change occurs in the way you care. For one, you understand what is happening from his or her point of view. This is especially useful during those stressful moments described by a dry-humored nurse caregiver as her mom stepped her last nerve. If you can catch yourself before “losing it,” you’re able to understand how the disease causes your loved one to behave and feel. You imagine what it would feel like if you were in his or her place and how you’d need kindness and understanding.

 

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