Coping With My Mother's Dementia

I write this piece about coping with my mother's dementia as a fellow-struggler. Counselors don’t live problem-free lives. We have issues just like everyone else. One of the biggest challenges my husband and I had occurred in the last year of my mother’s life. I share it here in hopes that someone struggling with a parent suffering from dementia or Alzheimer’s can relate and know that you’re not alone.

Coping With My Mother's Dementia: How My Story Began

My precious father died in 2013 just a few months from his 93rd birthday. Without his social security, my mother couldn’t afford to stay in their assisted living facility, nor could my brother’s family nor mine. She would have to come live with one of us. My brother’s house was a two-story with bedrooms upstairs. Ours was one-story with plenty of spare room. So, at age 89 momma came to live with us for the last year of her life.

Whenever Mark and I had come to visit my parents, we noticed that momma was a little “off,” but we didn’t think much of it because she was always saying or doing odd things and laughing it off saying, “Well, I guess I’m going nuts!” We’d always laugh with her, but she was actually in mental decline. We realized how severely when she was with us 24/7. Momma loved Jesus and was the best Christian and sweetest person you’d ever meet, and, thankfully, that never changed. But her dementia became an ever-growing challenge, especially for my husband since I counsel people until late in the evenings and he was pretty much her sole caregiver.

Funny and Frustrating

Bless his heart, Mark loved his mother-in-law and tried to be patient, but it was hard. He kept a journal as a coping tool. Sometimes she was funny, other times she was frustrating. Not her fault, but it was still hard. Here’s one entry from Mark’s journal:

“I came in and found Dorothy reading a church newsletter in the dark. I asked if she’d like the light on. She said, “The temperature’s okay for me.” I spoke louder, “Do you want the light on?” She said, “Oh, the fan?” I finally just turned the light on. Later, we were all watching TV and I said, “Do ya’ll want to go out for dinner?” Bernis said, “Momma, do you want Mark to take us to dinner?” Dorothy said, “That’d be alright.” Bernis asked, “Are you ready to go?” Dorothy said, “Yeah, I’m ready.” So, I moved the car into the garage for her and turned on the air conditioner so it would be cool when she got in. After 20 minutes, the woman who said she was ready to go appeared. We arrived at the restaurant, got seated, and started looking at the menu. Suddenly Dorothy took out her hearing aid and handed it to Bernis, saying it was too loud in the restaurant. She lost her glasses this morning. So, she couldn’t see to read the menu or hear us tell her what it says. She said she didn’t want Mexican food in the Mexican restaurant, so we finally ordered her a chicken sandwich from the children’s menu. She ate three bites and said, “I’m full as a tick.” We got home and put on a movie. She said she needed her glasses and Bernis reminded her that she had lost them was the only person who knew where they are. She went in her bedroom to look for them, and never came out. I have to laugh at these things or I’ll go crazy.”

As time went on, Dorothy’s dementia grew worse and worse. Although we had hired a caregiver to be with her while we were at work, and Mark worked very hard to care for her in the evenings until I got home and took over, it wasn’t enough. We learned later that one of the symptoms of dementia is loss of appetite. When she said, “I’m full as a tick,” even though she hadn’t eaten anything more than a small bite or two hours before, to her mind she really was full and couldn’t bear the thought of eating. And that was evidenced in her spiraling weight loss at each doctor’s visit. Mark tried and tried to get her to eat, made her favorite meals, cajoled, begged, everything he could think of, but she was “fuller than full.” Momma was always trim, but now she was frighteningly thin. The doctor finally told us that unless one of us quit our job and stayed with her around the clock, she needed around-the-clock care and prescribed a nursing home. We found the nicest one there was with an opening, moved her in with photos of all her family, bought flowers, nice furnishings and clothing, and visited her daily. Every night she would pack her little walker and try to go home, and every morning I would unpack her walker, move her back in and look at pictures of our family and talk about them with her.

How It Ended

Finally, when we came to see her, she was unconscious and we couldn’t wake her up. We called the ambulance and to make a long story short, she crashed. They moved her into a hospice unit in her nursing home. The staff were so sweet and kind. The whole family came in. We sang her favorite hymns to her. Mark read every Scripture he knew as a pastor from years of being with families in the time of death. And inevitably and gently, she breathed her last breath on earth and entered the house prepared for her by her Savior.

The death certificate gives the cause of death as starvation. We did our very best. We still don’t feel that it was enough. Dementia and Alzheimer’s are some of the cruelest ways that death takes people. Slowly, it robs them of their very identity. If we don’t have our memory, what do we have? She would often ask Mark, “Do you know where Willard is? I’ve been looking for him everywhere, but I can’t find him.” Mark would have to tell her that Willard died last year and he’s waiting for her in heaven.” She’d mourn all over again like it was the first time. Mark would often say to her during those times, “Dorothy, I wish I was you sometimes. You’ll forget this in a few minutes and be fine, but I have to live with it the rest of my life.”

You're Not Alone

Time doesn’t heal all wounds, but it does move them further from the surface. I can talk about these things now without tearing up (although I am pretty weepy as I write this). Know that, if you are struggling with a parent suffering from dementia, there are people who have been through this and understand.

I encourage you to read about family therapy, and then contact us for a free thirty-minute consultation with one of our caring counselors.