I’m Her Voice and Her Advocate

I’m Her Voice and Her Advocate

July 2, 2020

Melissa noticed her mom's forgetfulness and frequent trouble finding her way home from familiar places. She didn't know it then, but these were early signs of dementia. Melissa shares how it took a fall to finally move her mom closer to home, the frustrating experiences of navigating Medicare, and the importance of asking the right questions. This is Melissa's story.

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Melissa. I’m a Gen X woman from Oklahoma. I am currently a caregiver for my mom, who has dementia.

What did your life look like when you became a caregiver?

My mom was living in Illinois, where she had lived since 1981. My father died in 1995 and while she had relationships, she never remarried.

I was a parent of two children, one had just graduated from college and the other was still in college. I had stopped working to finish my degree and was in the beginning of my junior year.

After a ton of otherworldly back-and-forth communications, and finally a fall that left her unable to take care of herself, I moved my mom to Oklahoma in 2014.

Who did you care for and what prompted their need for care?

I was an only child, so mom and I were close at different periods of my life. She had been an alcoholic which created a few rough patches but I had found a way to work around her sometimes odd and demanding behavior. She usually visited us twice a year; once at Christmas and the other in the summer (the summer visits started when we installed a pool).

One of her friends called me early in December 2013 to tell me that mom had been having trouble finding her way home after her daily water aerobics class. She said that mom had been forgetful and would make excuses to not drive and for others to pick her up and bring her home. She had always been very mobile, so it was a very noticeable change in her behavior.

Her friend also was very concerned that mom would be angry that she had called me. After that, other friends of mom started calling me with updates. It took me a while to accept that there was a problem (the early stages of dementia). When she said she wasn’t coming to visit for Christmas, I knew something very serious was happening.

What was a memorable learning?

I remember being terrified and frustrated with having to learn about Medicare and its rules at supersonic speed.

Also, I was incensed at how predatory the magazine subscription industry is. Every time she got what looked like a renewal in the mail, she paid. She had prepaid Better Homes and Garden through 2021.

What surprised you about caregiving?

How little I knew about her day-to-day life and how good she had become at appearing “normal”. Also, I was surprised at how stressed and, for lack of a better word, desperate I felt even though I had moved her to an assisted living facility.

How do you try to balance being a caregiver while caring for yourself?

It’s been a pretty steep learning curve. I’m her voice and her advocate; without me, so many things could have gone sideways and I’m very aware of that. It’s been difficult to allow myself a break now and then when I need to not be always thinking ahead of what could happen, what should be happening, or what’s not getting accomplished as far as her care goes.

What resource would you recommend to caregivers?

A really good therapist.

What advice would you give to caregivers?

Don’t back down if something doesn’t seem right. Google the rules as situations arise to prepare to ask the right questions and shut down incorrect or misleading responses. Give yourself permission to say “no” and “that is unacceptable”.

Is there anything else you’d like to share?

Caregiving is HARD. I had no idea how much it was affecting me until I started writing (a lot) about my thoughts, about my experiences with my mom from childhood to now.

Dealing with a parent with dementia can be frustrating on a level that no toddler can rival, and dealing with Medicare rules, hospitalizations, care facilities, and medical professionals has brought me to tears many, many times. Not because of hurt feelings, but because of frustration at not knowing what to do next or where to turn.

Also, some of us have a bit of “baggage” from our childhood that can be hard to reconcile when the parent you had no longer exists; we have to find a way to be okay with having no chance of resolution to past hurts.

Where to find Melissa

Melissa blogs about her experiences caring for her mother at Departure From Logic.

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