Dementia caregivers need self-care and peace

November 3, 2022

By: Mary Fitzhugh
A working caregiver who provided long-distance care for her mother for thirteen years

My journey caring for my mom started in 2009. I remember it like it was yesterday. We celebrated her 80th birthday with a huge surprise party with more than 100 friends and family in attendance. Fast forward to 2011. Mom seemed to forget things a little more and her short-term memory seemed disjointed.

The fact that I was a long-distance caregiver from Illinois while my mom lived in Milwaukee didn’t make things any easier. One of my brothers was living in the house with my mom to ensure she was safe at night. The other brother helped a few nights out of the week. We also enlisted the care of two women to help during the weekdays. I’d talk to my mother daily and it seemed to be fine. I’d drive up every other weekend to give my brothers a break. As you can see, it wasn’t my journey alone.

A few years later my mom and I were at an appointment with her primary care doctor. I mentioned to the doctor how my mom was feeling, and he asked her a few things like what day of the week it was, year and when was her birthday and she couldn’t answer his questions. At this point she was diagnosed as having the early stages of dementia. It seems like as soon as she was officially diagnosed everything began to change. She paced the floor sometimes all night. She started to wander.

I wanted to move my mom to Illinois to live with me and my husband. We tried to bring her over for the weekend. She tried to leave as soon as we arrived. She wanted to go home. It was draining emotionally, as well as financially. Me and a couple of my siblings basically put our lives on hold to make sure that she had what she needed. For those of us working that meant using vacation and time off to spend with mom.

My advice to other caregivers is that you must allow yourself to be in the moment. We don’t always know what to do, so try not to worry about fixing things. Don’t second-guess how you feel. Don’t be afraid to question what the doctors say. You are your loved one’s advocate. They know deep down inside that you love them. It’s not communicated to you with speech. They say so much with their eyes and the human touch. If someone offers to help, please accept. Don’t try to do everything yourself. Ultimately, you will need self-care and peace.

Get help now!

We eventually connected with the Alzheimer’s Association. They helped our family a lot, providing funding for caregiving services through the National Family Caregiver Support Program. If you haven’t reached out to them, now’s the time. On Saturday, November 19 from 9:30 a.m. to 3:30 p.m., the Alzheimer’s Association invites you to attend “Caring for the Caregiver – A Day for Me” at St. Matthew C.M.E. Church. Enjoy self-care with chair yoga, chair massage and low impact exercises. Hear inspirational words on managing depression, finding caregiver resources, and the power of music and art in the dementia journey. Register for this free event by November 11 at bit.ly/dayforme1119 or 800.272.3900. Do it for yourself.