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My Caregiving Journey

My Caregiving Journey

Regular listeners know a lot about my caregiving journey, but maybe you’re new here. Even if you’re not new, there are stories I probably haven’t discussed much on the podcast.

Coupled with what you’ve already heard, there’s a lot I rarely shared. I have kept many of the stories relatively basic for fear that I would offend somebody, and I rarely mentioned the negative happenings.

Obviously, I didn’t grow up on social media like so many people. Also, knowing that my Mom would have been unhappy with some of what I shared, I tried to show only her highlights. Late-stage Alzheimer’s isn’t pretty, and I was cautious not to be too negative.

Photos, Videos & Journaling

I wish I had recorded more, journaled more, and taken more photos and videos along the journey. When I look back on the images and videos I do have; I’m happy seeing how well I was at caregiving. Witnessing the journey that Mom and I were on together keeps all the memories fresh in my mind.

Starting the podcast late in Mom’s disease is why I haven’t shared more from earlier in our journey. There’s one story that regular listeners are all too familiar. In our photography business, Mom started taking orders with no instructions or due dates. In the beginning, it was easy to dismiss the problem. We all get distracted and leave things unfinished; it’s normal.

What wasn’t normal is living through this problem happening more often. To keep clients happy and the workflow going, I started supervising her when she was chatting with a client. Attempting to be respectful, I tried to hide what I was doing by acting as if I was interested in the conversation myself.

Moving into a New Stage

After my parents retired, I was relieved that I didn’t have to supervise Mom, but I also felt my involvement was necessary. Complicating what I felt was my responsibility to my parents was my responsibility to my daughter. She was in high school at the time. Between parenting her and running my photography studio, I didn’t have a lot of time to help out my Dad.

Whenever possible, I made time for them when they were in town. My parents’ doctor was a mile down the hill from me, so they would take me to lunch or spend time with me at my house. Sometimes during these visits, Dad would ask me to take Mom shopping, which, unfortunately, never went well.

By not being present in their lives on a more daily or weekly basis, it was hard to understand what tips worked when Mom presented some of her challenges. One particular visit, after Dad plopped himself in a chair, he insisted I take her shopping for new bras.

When Knowledge Would Have Been Helpful

I tried, but she didn’t understand why we were shopping for bras, didn’t think she needed them, and wasn’t interested in spending the money. Nearly three years into podcasting, I have learned some techniques that may have worked better in that situation. I needed to find a way to make her think it was her idea.

There were lots of situations where I tried the “usual” suggestions only to end up frustrated. There was a Christmas Eve when all the family was at my house. Mom always wanted to be useful. She asked what she could do to help.

My honest answer, the one that I wanted to give her, was “just go sit and visit,” but I knew that wouldn’t go over well. Having planned ahead, I gave her a task that I thought she could handle. The peppermint cheesecake needed crushed candy canes sprinkled on top. This task was one that I thought she could handle, but I was wrong. Had I given her the candies already crushed, it may have gone better.

What I did was tell her she needed to crush the candies (I demonstrated) and then sprinkle them on top of the cake. This explanation and demonstration did not help her. She’d take care of the task for a minute, and then she’d ask me what she was supposed to be doing. To say the entire encounter was frustrating is an understatement.

All things considered, my message for you, podcast listeners, and people I meet that are caregiving is simple. Learn as much as you can about caregiving, the disease, and how to care for yourself during the process. The earlier you start this process, the better the journey will be for everyone.

Related podcast episode

Cruising Through Caregiving

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Fading Memories was created to support family caregivers in a simple, on-demand form. When I was looking for advice on caring for my Mom, I needed this podcast. Since it didn’t exist, I created what I needed!
Jen – pod host

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