beyond the video

The Roller Coaster Ride of Emotions for the Caregiver—Mother and Son

A son talks about the ups and downs he goes through in caring for his mother.

Video summary
The caregiver in this video excerpt has had his mother living with him for more than four years. Initially he thought she simply needed additional assistance. When she began burning pots that had been left too long on the stove and hiding them under the back porch, he realized that she had an illness, but he still holds on to a bit of denial (he calls it hope) that if he doesn't put the illness in front - as an explanation for her behavior - she may still do a little better.

We see this caregiver as a gentle person whose only expressed frustration shows up when, in leaving his mother to wash her face herself, she washes the sink instead. He says, however, that his emotions get in the way of accepting his mother's dementia as a reality. He notes that one day he felt himself snapping over a particular incident. He felt bad afterwards, and more so when he realized the next day that his mother was still upset by it.

The onscreen expert, Daniel Kuhn, MSW, advises caregivers to encourage people with dementia to use their remaining abilities as a key to maintaining self-esteem, while tailoring their expectations to reality. When we recognize that people with dementia tend to mirror our emotions, we can prevent many confrontations by simply staying positive.

Applying the video to your own situation

  • Denial is a coping mechanism that essentially says to others, "What you say may be true, but I'm not ready to face it yet." Because dementia is progressive, we must constantly adjust to further losses, and denial gives us time to make those adjustments. This caregiver is reluctant to give ground to the progression of his mother's Alzheimer's disease. Think about which aspects of your loved one's condition you accept and deny.
  • Dan says that it's important to give people with dementia the opportunity to continue doing what they can, but the caregiver here says that isn't always easy because his mother's desires outpace her remaining abilities. Think about the ways you have tried to help your loved one remain a part of things. What's worked? What have you had to give up on?
  • This caregiver notes that when he "snapped," his mother was still upset the next day. Each person with Alzheimer's disease is an individual with individual reactions, but it isn't unusual for someone's feelings and mood to be affected long after an incident has passed. Have you found this true? Has it influenced your behavior in any way?
  • Dan suggests that a positive attitude can help us through tough situations, but it isn't always easy to maintain. Think about a time when a positive attitude helped you in a tough caregiving situation.

Adapted from: He's Doing This to Spite Me: Emotional Conflicts in Dementia Care; Northwest Media Inc., Eugene, OR

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"I want to respect her as my mother and not totally take over."