Dementia’s Hidden Battles: A Daughter’s Perspective

The person with dementia is not giving you a hard time, the person with dementia is having a hard time.

This really resonated with me. My mom started showing signs of memory loss as my brother and I were moving her out of the home she and her deceased husband had built and lived in for over 20 years. At the time, we dismissed it as a stressful moment with a lot of changes. A year after settling into her new home, we were still noticing the same memory loss, along with increased aggravation over seemingly minor events. I always knew my mom as someone with a long fuse (like many moms), but we were seeing someone who was less patient, more demanding, and sometimes downright rude.

Mom started to become secretive. My brother and I had always been her emergency contacts, but suddenly we were removed from her medical HIPPA forms, and she was telling her doctors not to speak with us. She stopped sharing her daily experiences, and who her friends were with us. Somehow, we had become outsiders in her life. That’s when her friends reached out to share their concerns and observations.

I really believed mom was just pushing us all away for some unknown reason. Now, through the exceptional senior care partners we have at Damefender, and the dementia training I attended, I know that my mom is doing her best not to be a burden, to fight for her independence and control, and to try to hide her growing deficiencies. It’s only with hindsight that I have a clearer understanding that she was scared and aware of her dwindling abilities.

When they say they want to go home, they’re saying the place they are in doesn’t feel like home.

This past summer we visited my mom to celebrate her 80th birthday. We took her to one of her favorite restaurants, which is always busy because the food is so good. After spending much time deciding on the meal she wanted, she took a few bites of it and said she was going outside. We saw her just standing in the parking lot. When I went outside to see what had happened, she said she was ready to go home.

Mom was teaching us a new way to communicate with her. Being outside felt like her best option since she couldn’t drive herself home. In hindsight, I know that restaurant was too loud and chaotic for her. While restaurants can feel celebratory to many, I’ve learned that my mom prefers making food at home and doing what is familiar. That routine feels safe to her.

Dementia is an atrophy of the brain, in particular the hippocampus, which plays a key role in learning and memory.

Last week my mom was hysterically crying about her beloved clarinet, telling me that people had come into her home to disrespect things that are dear to her. She called me, my brother, and her friends demanding an explanation. She keeps this clarinet under her bed, although she hasn’t played it since high school. The case is understandably tattered and stained, but the clarinet and its red velvet cushioning are still in pretty good condition.

The truth is nothing happened to her clarinet last week, but she has no memory left of the years my brother played her clarinet throughout high school, of me trying to play it for a year in middle school, or that over 60 years have passed since she has used it. She only remembers it looking like it did when she was young; so when she found it under the bed, she was shocked.

I was reminded of the training and how the hippocampus loses memories in reverse order, like falling from the top of the bookshelf first. Her more recent memories are gone, but her childhood memories remain.

What I’ve learned:

Do the paperwork early. Throughout this stage with my mom, I’ve been grateful that we set up Power of Attorney for her many years ago, while she was healthy and thinking clearly. If we had waited until she was removing our access to help her, this would have been a very different process.

Plan for the unexpected. Admittedly, we allowed mom to stay in her home longer than we should have. She loved it and we wanted her to stay as long as possible. However, if we had spent some time drawing up a plan for her and her assets, her transition would have been smoother. There’s also a 5-year look back period regarding Medicaid, which requires advanced planning.

Find new ways to communicate. I try to anticipate my mom’s needs so moments are smoother for her. I offer choices to her to avoid overwhelming her. I ask less yes/no questions, because she’s quick to respond without much thought. I try to remember that her memories might be gone, but she still has great capacity to have the same feelings she always has. Sometimes those feelings are even more pronounced. I try to remember she’s having a hard time too, and her dignity and respect is important.

Remember to take care of yourself. Caregivers who are experiencing strain had a 63% higher mortality risk than same-aged peers who were not caregivers. Caregivers often don’t have enough time to make their own appointments, take their own breaks, and feed themselves healthy food. It’s critical to put on your own oxygen mask first.

My goal in taking this certification course was to better understand dementia, both for professional and personal reasons. I now feel better equipped to help our clients and their families with some issues they might face, and I know that this has had a positive impact on my own family. Knowing that those with dementia might not be able to recall facts and memories, but they have great emotion and emotional memory, has made understanding them a bit easier. I’m still learning to communicate with my mom, and she keeps teaching me new lessons, even as her memories and abilities fade.