Dementia, Emotions and Kate Swaffer Rocks


One of the constants in my mom’s care has been changing nature of the extra caregivers or personal daily assistants (PDAs) we have put in place. At her old community, we were lucky to have one that lasted more than a year, but we lost her in the move to the new facility. Out of the two that moved with her, one has already changed. I know that the changing nature isn’t good for my mom, but I understand that often these caregivers need to do what’s best for them and their families.

I stopped by to meet the new caregiver. The agency knows I’m looking for a calm, happy face that can help my mom manage in her wheelchair and help get her involved in the community activities. When I arrive my mom is lying in bed and the caregiver is sitting silently in the corner. The caregiver tells me my mom asked to take a nap after finishing lunch.

When I’m chatting with my mom, she tells me I shouldn’t be talking to other people in the room about her. I actually didn’t break rule #15 by talking about my mom in front of her, but the caregiver did and I didn’t stop it. I should have asked her to join me in the hall. I hope you will read Kate Swaffer’s “20 things not to say or do to a person with dementia.”

I found Kate’s blog several years ago and she even worked with me to answer some questions on a joint blog we created called “The Dementia Dialogue.” When I make a blunder, she will politely let me know. She’s been a great help to me and I hope you will take the time to learn more about her. She was diagnosed with younger onset dementia in 2008 aged 49. Her website is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones.

While my mom’s dementia is pretty progressed and on a day-to-day basis she may not recognize me, she still senses a slight, reacts to energy, and emotions, and deserves to be treated with respect.

I appreciate what Kate Swaffer is doing and dream that one day I will get to tell her in person (she lives in Australia) how valuable her words and wisdom have been to me. Appreciated. 

Love More and Expect Less.

I was a sandwich generation caregiver. I was raising two children and caring for two parents with undiagnosed cognitive issues. It was incredibly difficult. I turned to blogging to help keep my siblings in touch with what was going on and found it became my own public therapy. I was pleased to learn how many other adult family caregivers found hope, healing, camaraderie, and a few laughs in my posts. I originally wrote this in 2012 and am resharing one of the many life lessons I learned on my journey. 

It is hard to deal with any loved one when they change. Over the past two years, I’ve gone from passive to confrontational to detached. And repeated this cycle a few times.

When I started to view my parents through the filter of “head injury,” my visits with my parents changed, in a positive way. They have no control over the changes to their cognition and I have to be patient.

Today, their united front reporting that nothing is wrong is unraveling. The number of late bill payments, denial of products purchased with their credit card and lost calendars and checkbooks are increasing.

Meanwhile, my siblings and I collaborate and support each other as we all deal with my parents in different ways and on different timetables.

On one recent post, Kate Swaffer who is dealing with her own dementia sent me a note encouraging me to “Love More and Expect Less.”  I’m still refining my own coping mechanisms and this was timely and sage advice. Appeased.