When They Want Your Help but Won't Take It

Steve Wishman
January 16, 2023

It's been nearly a week since Dad called to let me know he was sabotaging the help he asked me to give him. This is an outcome that I knew was coming and the pattern goes something like this...

  1. Dad badgers me about why I never want to drive his truck when we go places. I tell him it's because he has an intermittent starting problem and we could be left stranded somewhere.
  2. One day Dad's truck won't start (don't worry. he doesn't drive anymore, but he likes to keep it and start the engine a few times per month)
  3. Dad asks for help locating a shop that will work on his classic vehicle.
  4. I locate a shop and make an appointment.
  5. Dad then goes behind my back and asks other people what they think might be wrong, sight-unseen.
  6. Someone gives him wrong information. Dad calls me to let me know "the problem is solved."
  7. Dad asks me to perform the unnecessary repair based on bad info. "Just humor me."
  8. A few months later the truck won't start again. Pattern repeats.

It's such an expected outcome at this point, it feels like I've failed as a caregiver by letting it trigger an argument. And as a result of our arguing, I'm left with a week of caregiver guilt that I can feel in my stomach. Instead of simply rolling with his contradictions and maintaining that it's beyond his control, the dementia got the best of me. Now, as I try to make my dinner, I catch myself running scenarios and having endless proxy arguments in my head. Not only do we caregivers experience stress while we're "on the clock", we also have echoes of the day taking up residency in our heads when we're alone.

A topic of discussion at the last caregiver support group meeting was how unfair it for family caregivers when your care recipient will listen to anybody but you. As a child of someone with dementia, it's very common that you are the last person your parent will believe when you say they're acting illogically. It would be nice if I could bring other objective people into the conversation to help Dad understand my perspective but i'm increasingly becoming the center of his world. It's a phenomenon known as "shadowing" and as his condition worsens, it can become more pronounced.

Experts suggest that Alzheimer’s or dementia shadowing happens because the damage in their brain has caused them to make you the center of their world. They’re not doing it purposely to be difficult or to cause trouble. They follow you closely to reassure themselves that you’re still there. You’re their lifeline and connection to the outside world. You care and provide for them and keep them safe from anything strange or confusing.. (Source)

So what do you do when you are the lifeline for a parent with dementia but they won't accept your help? Arguments and conflicts are hard to avoid because the problem is illogical, so you can't use logic to resolve it. If you don't talk to them about what they're doing, it will keep happening. If you do talk to them about what they're doing, they will won't believe you and will start a fight. In our group session we identified three tools to help us work through these moments:

The first is mindfulness (keeping the perspective that it's the disease causing the problem, not your loved one). Your mind is hitting the panic button and you need to guide it back to a path of compassion.

The second is distraction and redirection. Find a gentle way to validate what they are saying ("That's great that you found some other opinions about your car problem"). This validates their feelings and avoids a bigger fight because you didn't say that they're wrong. Next, find a way to distract them from their worry. For example, you can ask them for their help or redirect them to an activity that they'll enjoy. Remember, this isn't going to prevent patterns of behavior (like my dad and his truck) from happening, but it will help you avoid becoming emotionally entangled in the situation.

Finally, the third tool we identified is the support group itself. Talking with others about shared experiences, laughing and crying together helps us get out of our own heads. If you don't have local caregiver support groups in your area, there are many to be found online. There are lots of support groups who do zoom sessions on a regular basis, and there are Facebook support groups like Dementia Caregivers Support Group and Memory People. If you're experiencing an immediate crisis, you can also text HOME to 741741 to connect with a volunteer Crisis Counselor. Many people don't like talking on the phone and would be more comfortable texting. And it's free, 24/7.

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Steve Wishman

Steve Wishman is the founder of Zen and the Art of Caregiving, and author/illustrator of How Mom Died, a webcomic/memoir chronicling his experiences as a caregiver for his mother at the end of her life.