Karen Stobbe’s dad was diagnosed with dementia more than 25 years ago and since that time, she has dedicated her life and skills as a theater professional into training others. “I went to every workshop, conference, and read every book. I wrote a performance about caregiving, then wrote a book, and then created my first training website. It began to feel like I was slowly crossing a river from theater to health care, putting down another stepping stone as I needed to move forward.”
After her father died, her mother was diagnosed with dementia, and along with her husband Mondy and her daughter Grace, they cared for her mother for 10 years in their home. “Now Mondy’s parents are moving in with us. So here goes our next adventure,” she says.
Can you share a personal experience relating to your methods/training? I use interactive techniques to train. I believe people learn more by doing than by only listening.
I also use improv exercises to train all types of caregivers. With my mom, we really practiced the improv guideline of ‘go with the flow’. Basically, in improv ‘go with the flow’ refers to whatever suggestion is thrown at you…go with it. No saying no. No denying the reality the other person has set up on stage. Go with what is happening. Same thing for being with a person living with dementia. My daughter was listening to music, and Mom asked her who was playing. Mom said she knew them. The Beatles. And not just knew them, but dated them. We could have said, “Mom, there is no way you knew the Beatles. And no way you dated any of them.” But why? Who was it hurting that she was saying this? You just go with it and listen to her tell her stories.
What do you think is the thing most of us don’t realize about dementia? That there is joy and laughter. That the more we understand how to be better caregivers, the better the experience is for all of us. That they are not trying to give anyone a hard time — they are having a hard time.
How do we get past the grief of someone not being who they were? As a person progresses in their dementia, I think the grief we feel as the person loses certain abilities and memories sometimes is grief about ourselves. Our personhood is wrapped into what others see in us, how they treat us, and love us. I know that as a caregiver, I may not have grieved some of the little things that my mom lost the ability to do, but as her daughter I did. And it was like losing little pieces of myself, my memories of who I am. I found my grief was more about me not having my mom to give advice and support in my life. Sure I could talk to her, and most of the time I got a pat on the head and she moved on.
My mom was always her. She just could not recall pieces of her life. I think the grief needs to be talked about. I think every caregiver should belong to a support group. And not just a Facebook group that is not led by a professional, but a real support group.
Karen’s Dementia Beliefs
- Everyone is different. Dementia affects everyone in a different way.
- No one can predict how a person living with dementia will communicate or act based on what “stage” they are in.
- Everyone has good days and bad days — even those with dementia.
- Always treat a person living with dementia as an adult and not like a child.
- Start from a place of normal.
- People living with dementia are not the ones who need to change…we are the ones who need to change.
- We need to focus more on the strengths of people living with dementia and work from where they are and what their abilities are now. Start from what they can do and not what they cannot do.
- People living with dementia need to have a life with meaning and purpose.
- Being a caregiver takes work. You need to be aware of your own behavior and how you communicate. You need patience, compassion, and flexibility.
- No one has all the answers.
- You need help. Don’t try and do this alone. Family. Friends. Your church. Support group. Resources in your community. Let others help you.
- Caregiving can be joyful.
Karen Stobbe developed a free website to help caregivers find resources.
You can find it at beinginthemoment.org.
By Anita Oldham
P.S. Check out more caregiving solutions here.