1. Who do you care for (now and/or in the past)? What is your role/relationship?
I cared for both my dad who passed away from brain cancer in 2001, and my mother who died from dementia after living with it for 30 years, in 2014.
2. When did you start to realize you were a caregiver?
With my mom, it was a slow process, assisting her as my father was her primary care partner. It was very natural and just something a daughter does for her parents.
With my dad’s cancer, it hit quick. Everything changed with one phone call. We had to pick my folks up at their cabin and bring my dad down to the Twin Cities for emergency surgery. The hospital got him set up in a room and allowed us to celebrate Christmas with him for two days, before they did the surgery. They didn’t know if he would survive. From this point forward, nothing in my life was the same. Dad pulled through the surgery and actually did well for about 4 ½ years, but mom’s needs increased; so I had to step up and step in to support my dad and mother.
3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities? What advice would you give to family caregivers in this situation?
My spirituality helped me a lot. I hate to say that in the beginning of the journey, I saw friends trying to help more like another thing I had to coordinate, communicate, and oversee. Boy, was that a mistake! I didn’t realize how much I missed my friends. I didn’t figure that out until one day I broke down and took time to be with my friends. Actually, I met them to get them off my back. But then the magic happened. We laughed and cried together. I felt normal again. I found I could care better when my soul was full.
I had gotten so task-oriented doing everything for everyone else, because I didn’t feel there was time for me. I felt that would be selfish of myself. I learned that to be a healthy care partner, I needed to take care of me, too.
4. What is the one thing you know now that you would tell new family caregivers?
- Be just as patient and loving with yourself as you are with others.
- Don’t let your inner critic run you down.
- Focus on whether the person you are caring for is first: safe, happy, and pain-free. Then do your tasks. You will find you are more compassionate, less stressed, and will get the job done in a better fashion.
5. How has caregiving changed you?
Caregiving has changed my life forever. It’s made me realize we all have the power to care better, to change the system, and to assist others on the same journey. I quit my job to shift dementia care from crisis to comfort. I advocate for dementia via my company www.AlzheimersSpeaks.com, which raises all voices around the world, including those living with a form of dementia. We have a radio show, blog, and a variety of videos from Dementia Chats highlighting those living with dementia, plus Dementia Quick Tips (things I wish someone had told me). I also partnered with David Wiederrich to launch www.DementiaMap.com, which is a global resource directory free to the public, as well as offering free and economical plans to those who have services, products, and tools to share. We feel strongly that budget should not limit access to those in need.
Click here for a downloadable brochure on Helpful Tips for Dealing with Dementia, courtesy of Alzheimer’s Speaks and Dementia Map.