Retaining My Independence

It feels like I ask my husband’s opinion for everything nowadays. He’s an engineer, and I have always asked for his input, but now I’m asking much more often. And, I’m asking about decisions I used to be comfortable making myself. I find it demoralizing to need help or reassurance so often. I refuse to stop trying to do things on my own. I’ve read that people with cognitive decline who allow their family/friends/caregivers do too much for them lose the ability to do those things themselves.

Earlier this month I visited my mom in Minnesota. I waited too long to commit to my decision, and couldn’t find good airfares. I asked my husband to help make the reservations, because I knew he could find the best rates. I also rented a car and a hotel room for one day, so I could visit a friend. I made my own car reservations, and a hotel reservation for one night. It was hard for me to decide which companies to choose, but I resisted asking for help. I made a bad choice for the car rental agency. Their listing implied that they had cars at the airport, but I had to take a shuttle to their lot.

Traveling was difficult. I rely heavily on my phone for information, and a poorly designed website or a hard to use app can mess me up. But I did it. I made all of my connections. I found my way to and from my friend’s house. Despite my fears, I found the rental car lot. I didn’t leave anything behind. Except for the car rental snafu everything worked smoothly, but boy did it wear me out.

I was determined to do everything by myself that I could. You see, I believe my mom gave up her independence before she should have. Her dementia is advanced enough now that she’s on the short list for a place in the memory unit at her retirement center. To our family it felt like Mom declined suddenly, but I can see now that it was a long time coming. My sister who lives nearby is a great organizer. It was easy for my mom to sit back and let Kathy handle most things for her. It was easy for mom to stop exercising. She has a walker and a scooter, and my sister drops mom off right at the door when they go anywhere together. Mom avoided exercise classes, and social events. She stopped wanting to travel, and travel was her favorite thing.

Mom didn’t use her hearing aids properly, and she got more and more confused as she missed what was said around her. She started losing weight. She didn’t remember to eat. My sister stocked her refrigerator with easy meals, but Mom didn’t remember they were there. Her facility worried about her weight loss, and eventually Mom moved to a limited care apartment. There she had three meals each day at the cafeteria, so she stopped losing weight. Care givers made sure she took her medication.

Mom stopped singing with choirs and groups. She was a soloist. Being a singer was her identity, and she gave it up. She had a bad experience with a new choir director, and she complained incessantly about how mean the woman had been to her. I watched Mom decline, but I couldn’t change anything. I encouraged Mom to exercise. I know that exercise is one of the best things you can do to keep your mind sharp. We need blood pumping through our body and to our brain. I arranged for library books to be delivered to her, but it was too late. She stopped reading.

This most recent visit to see Mom was heart breaking. Her care center was in lock down most of 2020. No more three meals a day in the cafeteria socializing with others. No more frequent visits from my local sister. My other sister and I couldn’t visit. For my part, I rarely called Mom, because it was so frustrating to try to talk to her on the phone. She never could get her hearing aids to work, and when she did she monologued about things like the mean choir director. Then in summer 2020 I was diagnosed with Mild Neurocognitive Disorder (mNCD), and I started to avoid our conversations. I couldn’t avoid thinking about whether I would end up as she is now.

When I came into Mom’s apartment for the first time in almost a year and a half, I frightened my her. She wasn’t expecting me. I quietly sat at the other end of the room, and chatted calmly with my sister while I waited for her to settle. I have two sisters, and the three of us spent the next two days sorting through 20 boxes of photos that my mom had stored. They’re not going to fit in her smaller apartment in the memory unit. Mom recognized me and my sister who lives in North Dakota. She recognized people in the photos. She recognized a photo of my husband, who she hasn’t seen in person for at least 5 years.

But, Mom couldn’t hold a conversation. When she got uncomfortable she started singing. She sings quite a lot now. That’s her singing background. Mom didn’t like talking in public, but she often led singalongs, sang with friends, and sang at church. But having her burst out in song whenever there was a conversational lull was disconcerting. The staff at her facility are grateful that she’s not angry or erratic, but it’s not comfortable to be around someone who spontaneously starts singing.

I can compare Mom’s early symptoms with the ones I have now, and I know I need to use my brain as much as I can. I need to eat well. I need to exercise and get blood pumping to my brain. I need to stretch myself and make decisions on my own. I need to keep track of my own schedule. I need to set reminders for myself, instead of expecting my family to remind me. I need to navigate to places on my own. I need to take my own notes. Yes, it’s hard. I recently purchased a smart watch to help me. It connects to Google Assistant, so I can just long press the button on my watch and say “Take a note,” and my notes are saved on the cloud. I keep paper notes too, but my watch is always with me.

Visiting my mom has inspired me to continue to work as hard as I can on retaining my life skills. People who lose their life skills are the people who can’t be left alone, because they need to be supervised. I don’t want that to be my future. In the meantime I’ll just keep plugging along (one of my Mom’s phrases) and doing what’s recommended.

Photo by Sanketh Rao on Pexels.com

4 thoughts on “Retaining My Independence

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  1. You comment that your mother misused her hearing aids somehow, which contributed to her dementia. I can understand that because a lot of us really don’t like to wear them–sensory overload, for one thing! What was your mother doing? I’m concerned because my audiologist has scolded me for not wearing mine enough when I’m home alone–my hearing has not actually changed, but I’m having more trouble understanding speech, and she tells me that’s why. I hope I can catch up.

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    1. I’m sorry I didn’t notice your comment Jennifer. I think my mom used problems with her hearing aids as an excuse for not always understanding what people said to her. She could opt out of the conversation, because she couldn’t hear. She was too polite to ask people to speak up. It was too hard to put her hearing aids in correctly. The brain needs to be exercised. Her life became quiet and predictable. When I phoned her, she monologued. She used to ask me questions, but when she couldn’t hear the answers she stopped asking them.

      My ENT told me (paraphrasing a lot here) that our brains need practice connecting sounds with concepts. Without practice we start to lose the knack of understanding what people communicating. My mom is now overexcited by television. Commercials are so outlandish and exaggerated she starts whooping and pointing at the tv. “Look at what that dog did!” “Oh my goodness, that man just jumped over a canyon.” She’s become very literal and focused on the here and now. I kind of think the hearing problems were a slippery slope for her. Once she tuned out of her social world she started losing track of what things meant.

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      1. Your mother’s behavior was a lot like my mother in law, who also developed serious dementia . She was sold the “all in the ear” aids because they didn’t show, but they were hard for her to insert. She didn’t understand when batteries were dead either and couldn’t undertand why they didn’t work. She claimed she could hear anything she wanted.
        She also did the monolog thing as a ploy to keep control of conversation without having to admit she couldn’t understand us–we used to ask each other “what tape is she playing today”?
        I’m glad she didn’t get into that hyper-reactive stuff in her nursing home later. She withdrew and slept most of the time. They could never get her interested in anything.

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      2. Hyper-reactive, that’s a good way to describe it. On her own Mom doesn’t watch tv anymore. Sometimes she turns on the Weather Channel, or the closed circuit video of the lobby in her building. When I visited Mom before Covid I tried to find something for us to watch together, because Mom talked non-stop when I visited. She didn’t get to see me often, so she made sure to make the most of every moment together, but she didn’t take into consideration that I’d started spending a week with her when I visited.

        Nowadays Mom has also withdrawn. She couldn’t follow the conversation between my sisters and me. She has a lost look in her eyes now. I can see how it’s restful to disengage, but people with dementia who stay active have better outcomes.

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