I am writing about some trials and tribulations of having a grownup version of a 3-yr-old trying to live in a home with appliances that no longer make sense. And not just appliances. One day my aunt Rose, who lives with us, ran out of toilet paper in her bathroom. She forgot that the extras were right next to her under the sink in the bathroom, so she came out and found paper towels. Yup, toilet overflow, water all over floor. Plunger needed extra strong help.
What I have learned from a dementia support group is that the person with dementia is not doing things on purpose. It is not her fault. She was trying to solve a problem the best she could, without all the memories and brain connections she once had. So I cleaned it up and explained that somehow some paper towels had dropped in the toilet. Paper towels were removed from her bathroom, and toilet paper is now always in sight. Accident, no blame.
Almost 60 years ago my grandmother had dementia, but back in the sixties they called it ‘hardening of the arteries to the brain.’ No one talked about their crazy relatives back then, like it was shameful. It was scary, dangerous, funny, and sad, but certainly not shameful. Grandma had been quite smart, and used to have common sense. Then she tried living with a brain that just wasn’t working right. She boiled eggs one day, and forgot about them, till the water ran dry and they exploded, sending egg all over the kitchen and ceiling. When I had gone to Girl Scout camp, one of the songs I learned that amused me was about Grandma, ‘swinging on the outhouse door, without her nightie. Scandalized the whole darn town.’ Yes, dementia existed long ago as well as now.
As frustrating and sad as these situations are, they could be found darkly humorous. I read the articles about problems raising kids when mine were toddlers, (remember Erma Bombeck?) and I used safety measures and very high locks. But this is different. Our dear elders are taller and think they can still do things. How frustrating it must be for them, just as it is for us.
Aunt Rose used to be an excellent cook. My aunt luckily stopped cooking, but she likes to tidy up. One day she tried to lift my cast-iron skillet, and dropped it on the glass stove top. Yes, the glass cracked right through. A new on-sale stove was cheaper than replacing the top!
Another day her night light wouldn't work, or pull easily out of the plug outlet. I caught her with a metal utensil, ready to stick it in the outlet to pry it loose.
Everything electronic has somehow malfunctioned, from tv to coffee maker. Keurig was the only coffee maker she could manage on her own, but we just bought our third one in 7 years. Now she stares at it, trying to recall what to do. Last week she almost made her coffee without remembering to put her cup under it.
Meanwhile, the tv is still not working.
Yes, it made me crazy at the time, and we added hours to companion time for her, so she's never alone. I've also read information on choosing a nursing home, as I want to be ready before it is necessary. We will soon be visiting some as my husbands health has been improving. Last winter when he was in so much pain and brain fog that he couldn’t drive or do much, I worried about him too. He was on another floor watching Netflix on the computer. He was dizzy, so I kept an ear out in case he fell. Instead, it was Rose who fell. Her awareness of day or night has disappeared, and she sometimes gets up while we are still sleeping. About 6 am the dog awoke us. He was downstairs barking insistently. Rose was on the floor, passed out, and her walker was down too. I called an ambulance. First responders came in a plow, luckily, as it was snowing hard all night. He plowed enough to get the ambulance in close to the front ramp. I never found out what had happened to her, as she had no memory of falling, and the dog can’t talk. Thank goodness he knew to bark! After tests, it was determined that she was badly dehydrated, and had a UTI.
When my grandmother lost reality, it was easy for me to go along with it. She was such a wonderful woman, and I’d been privileged to spend a lot of time with her when she and I were younger. I stayed with her overnight when Grandpa worked away from home. She had told me about life in her time, her feelings, and how she coped. She also listened to me, with no judgement, and just loved me. Of course, learning her method of making pie crust was a bonus.
Now she told me about some mean old woman who watched her all the time across from one window. (she pointed to a large mirror). She’d hide things from this old woman who spied on her. (Some mail, checks, and money were never found). Covering her mirror ended the spying woman. Then there was Lawrence Welk’s band who came to play and sing to her 'just outside her window.' (the one behind her tv). I agreed with her that they were very nice to do that.
One day something rolled under the sofa. We figure she had forgotten what flashlights were, and she lit a match to see underneath where it rolled. Yes, the sofa caught fire, and grandpa called the fire dept.
Another habit she had for a long time was burning string in the bathroom. It hung on the end of the radiator over a metal trash can. After lighting it, she’d blow it out and used it like a smudge stick to make the toilet smell better. One day she told me that her family in Nova Scotia had better string, or rope. It smelled better and made her feel better. They just didn’t sell it in her city. It was a long time before I figured out she was probably talking about the hemp used in the fishing village for nets. It was used in the outhouse. I wonder how much time was spent out there smoking it.
Grandmother's dementia had progressed to not knowing any of as by name, though she related to our spirit. I was a 'good friend' from her school. It was harder for my dad to see his mom this way, and to accept it. However, he found an excellent nursing home for her after she became violent.... Grandpa hadn’t accepted her reality yet. He argued with her and kept trying to correct her. One day she just did not recognize him, and told the "intruder" to leave. When he stayed and persisted, she knocked him unconscious with a frypan. She then ran from the house and around the corner to the police station. In her nightgown. Luckily, they took her seriously and investigated, calling an ambulance for Grandpa. That's when a Nursing Home was found for her. Insisting on reality is often dangerous.
After she was settled in a safe place, she began to shred her nightgown into strips for rags, from the hem up to the neck, while she was wearing it. (I tried to picture her naked with a necklace of rag strips hanging down around her, and I couldn’t without giggling.) She believed that she needed the rags for when she would have her period. As a girl, ‘on the rag’ was literal for the moontime. Those were the years that the Rag-man used to go door-to door, buying and selling rags.
My folks got her pajamas that could be tucked in. To keep her occupied, Mum got her a life-sized baby doll, and Dad found an old cradle that was put on the floor and rocked with the foot.
I enjoyed listening to her world and validating her. When I visited grandma, she showed me "the baby", and said that a very nice couple had come to visit her. They were going on a voyage, and asked her to take care of their baby. Then she whispered to me that when they returned from their trip, she would not give the baby back. She would keep it. We both laughed quietly like conspirators.
Rose also spent time with me when I was younger, and I love her. This is why we do what we can to help our loved ones age. Luckily, I am retired and can do more now.
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Shortly after writing this, Rose had some mini-strokes (TIAs), could no longer walk, and had a bad cold. I was unable to transfer her to or from a wheelchair, so we found a MemoryCare nursing facility for her. She enjoyed it for nearly 2 months, till pneumonia took her.
And the time she wanted to take a bath in the step in tub. She turned on the water and forgot to get into the tub and shut the door to the tub. I heard a strange noise and went to investigate. There she was at the door to the bathroom with a mop in hand trying to mop up the water, while the water faucet was still running with the tub door still open. Sixteen gallons of water and a rented carpet extractor later. I helped her take a bath. Again my mess to clean up.
Oh how I miss those days.
sorry my screen is getting blurry.