I knew right away that something was different. My 74 year old mother and I had been very close all my life. (She lived with my family.) When her personality started to change I couldn’t understand why. She loved crafts, gardening, singing, piano, anything creative, but all of a sudden she wasn’t interested in her hobbies. She just wanted to sit in her chair and watch TV. We started to argue. It reminded me of when I was a teenager 25 years earlier, how we would squabble over stupid things. Then she would get angry at the littlest thing and slam her bedroom door in my face.
Nothing made sense, why was she changing? Was she mad at me? Was she depressed? Should I take her to a doctor?
One day she would be grumpy and then the next she would seem fine and we would go shopping for new flower bushes, have a great lunch out and come home laughing. Cook a ham, play some scrabble, help the kids with homework, she was an integral part of the family. I kept thinking… oh good, it’s all over now.
But then a week later her alternate personality would come back. Irritable, argumentative, slamming her hand on the table, frustrated, insisting that she was right even though everyone in the family knew she was wrong.
Another day would pass and she would have no memory of having been angry or why. It was very frustrating. She would return to her normal self and expect others to treat her normal. But we were still angry from the fights the day before and didn’t want to just forget and have everything be as if it never happened, again and again. We were walking on eggshells trying not to provoke her, yet once it happened and the ‘real her’ was revealed once again, all bets were off. The screaming was cathartic after awhile. The past and everything I had ever done wrong was a good source of ammunition for her.
Then the real memory problems started. She would forget that you can’t put a metal spoon in the microwave. When I brought it up she would insist that she hadn’t done it. Another fight would ensue. We would be driving home and she wouldn’t know what street we were on. She would stay up all night long and sleep all day and didn’t know if it was day or night when she woke up.
She would lock herself in her room and watch infomercials. Before I knew it packages were arriving in the mail – hundreds of dollars were being spent on work at home schemes and worthless coins. I didn’t know what to do. She insisted that she was going to do these home jobs, but I noticed that all of a sudden she was making mistakes in her checkbook and having trouble reading. Even if she could do these work at home jobs, they were a scam but she didn’t see it, accused me of trying to circumvent her freedom.
We went to see her doctor. I told him of the changes that had been taking place. I mentioned Alzheimer’s (I never should have mentioned that word.) He laughed at me, made me feel like a fool. He asked her who the president was, what the date was, a couple of other innocuous questions and then told her 3 words that he wanted her to remember. A couple of minutes later he asked her the 3 words. She could only remember 1 of them. He patted her on the shoulder like a puppy, said everything was alright, told me that she was fine and sent us on our merry way. She was vindicated. See! I told you there is nothing wrong with me!
If I knew then what I know now I would have sued the jerk. Wish I had taken her to a neuro specialist and not a general practitioner. Live and learn…
Things continued to worsen but the pace was so slow so minute in time that it was hard to tell on a monthly basis. It was only by looking back a year or so that I could see all of the changes in her that had been made. She was starting to have trouble walking, afraid that she was going to fall. Next was the incontinence, but she refused to wear a diaper, so for months I had loads and loads of pee soaked laundry to do on a daily basis. I had to cover all of the couches and chairs in crib liners. I was embarrassed to have company over to the house. Sometimes the smell was just horrible.
She would ask the same questions over and over. What time is it? What day is it? Where is the baby? How many cats do we have? What time is it? How long have we lived here? Where is my food… I haven’t eaten in 2 days!?
I started a diary of inappropriate and mean things that she said. I would show it to her a day later but she would deny having said them. All I wanted was for her to acknowledge that she was becoming intolerable and understand where we were coming from. To hear a little old lady swear like a Navy sailor was scary. How could she not remember??
I realized that taking videos would become important. I am so glad I have them now although they are hard to watch. When I would play back the audio tape of her angry voice she would be shocked and apologetic. We would talk about it. Didn’t matter though… It would only last a half hour before she forgot again. I realized that it was ME that wanted her acknowledgement, that it was pointless to her. Once I realized that, I quit trying to get her to admit that she was different now.
Years continued to pass and she slowly changed from the mother I knew to someone I didn’t know and didn’t want to know. She stopped taking showers and cleaning her dentures. She refused to cut her hair. She insisted that she had never seen the clothing that she wore each day. She argued incessantly with my children, especially the youngest who didn’t know that a 6 year old and a 77 year old shouldn’t be battling over how to play card games. She demanded candy and cookies and would refuse to eat anything else. The warm loving mother and grandmother turned into an evil witch. The kids grew to hate her and refused to help her or be friendly to her when her mood would swing back the other way and I could see the confused hurt on her face when they would rebuff her attempts to be friendly.
I didn’t know what to do. I read as many books as I could about dementia, but they were all about who the people use to be instead of the changes they were going through. Why was it such a mystery? It was like if you weren’t a member of the club you had no idea what it was like. If you didn’t work on an Alzheimer’s ward at the old folks home, you were clueless. I read about President Reagan cleaning his pool. He would do it every day. What about the rest of the stuff? Don’t they think it would have helped to have society know the real story?
I joined a support group and tried to help the other members learn how to deal with their family members. One man was frustrated because his wife wanted to purchase 12 cans of corn at the grocery store. He tried and tried to convince her that they had some at home and she would become hostile. I told him, buy the corn. Later in the week when she forgets about it, take it back for a refund. The point is to stop the fighting and agree with the patient, whatever they believe, just agree, agree. No point in arguing. The patient is on another plane. Living in an alternate universe. Never to return. The easiest way to cope is to think of them as a child. A child regressing backwards. A child that can’t remember what a beautiful person they used to be.
I thought about medication but reading about the side effects, the vomiting, the liver problems I had doubts. (It was stupid of me to worry about the physical side effects when the dementia was a death sentence to begin with but I didn’t know.) When I read up on it and learned that the meds didn’t actually slow the progression of the disease, I decided to forego the pills. Looking back, I probably should have tried them, just perhaps to have her be like her old self for a longer period of time.
It went in stages. There was the season when she wanted to watch The Pianist every single day. It was always as if she had never seen it before. Then she wanted to write her life story. Except what she wrote was wrong. She thought she was born where her mother was born. She forgot marriages, children and jobs.
There was the 3 months in the hospital getting over pneumonia. I would visit her and she would ignore me, preferring to watch the TV. Then the next day she would ask why I hadn’t come to visit her in a week. It was heartbreaking. Once she was back home it was as if it had never happened. She didn’t even realize that she was now in a different bedroom, closer to the bathroom and kitchen.
There were small moments of kindness. We would take her to her favorite restaurant for her birthday. I gave her a gorgeous music box that she loved. We all hugged and smiled and took pictures and she went on and on about how wonderful the food was and how much she loved us etc. I would be on cloud nine.
A couple of days later, back at home there was yet another argument. She picked up the music box that she didn’t recognize and threw it at the television. Beyond the destruction and mess my heart was bleeding. I brought up her birthday dinner to try and remind her about giving her the box and break through the haze of hostility. She yelled that she hadn’t been allowed out of the house for something good to eat for months! The knife goes deeper. I picked up the music box and placed it on the piano. I can’t listen to the tinkling song: “My Favorite Things” from our favorite musical that we used to sing together.
There came a point when I really started to wonder if the new her was the real her that had been hiding deep inside all these years. What if that wonderful person, so good at hugging and taking care of boo boos and listening to my woes was all fake? What if this creature was really the mother I never knew? All of my school friends used to say she was the coolest mother on the block. I have so many memories of talking and sharing, painting walls, building 3D puzzles. I started to get hurt so many times each day that to protect myself I told myself she was dead. She was dead to me. Finally I mourned and realized that my mother was gone and I never even got to say goodbye.
After several years we finally got into a routine. She was finally OK with wearing diapers, although sometimes she would only change it once a day or take it off and not put on a new one. When I tried to change it for her a fight would start. She would swear that she had just changed it or that it was dry etc… It got to the point where I was afraid to ask her. I really didn’t need the stress even though the family was begging me to get rid of the stench.
Then there were the fights over medication. Every night I would tell her it was time for her pills but she would insist that she had already taken them. I would show her that they were still in the days of the week box, but she didn’t know what day it was. She would accuse me of trying to poison her. We stamped the calendar with a happy face for taking them and an unhappy face for refusing them. Several weeks would pass and she would swear that she had taken them on all of the days with the unhappy faces. Eventually I just gave up. I was the caretaker, but she refused to let me take care of her.
It went on for 11 years, a very slow progression. My bitter feelings are mostly gone now. Near the last year she would sit on the couch and say to my son, “I didn’t know you could play the piano so good, when did you learn that?” Every day he would smile because she had asked him the same exact question the day before.
Her short term memory was completely gone. She would ask for dinner and then be completely surprised when I handed her food 5 minutes later. “How did you know I was hungry?” She would watch a movie and say “I used to live there!” even though it was 60 years ago. Watching her listen to music from the 40’s and 50’s was strange, she knew every single word and laughed so brightly as she sang along.
When she had her CT the doctor said that her brain had shrunk quite a bit. He said as portions go dormant she will regress and then other portions of the brain will pick up the slack and she will come back until those connections stop too. I tried to take advantage every time she seemed to have made some new connections. It was nice to hear her ask “Why can’t I remember?” when years earlier she wouldn’t admit that for anything.
Sometimes she thought I was her mother which made her cry since she lost her mother at age 16. I would hug her and tell her how proud I was of her, what a good girl she was. She could no longer remember the names of my children or husband. It became ‘the tall one’ the ‘brown haired one’ and ‘the baby’ who of course was now 13. Family members from far away stopped calling.
When she seemed a bit more like her normal self, friendly, complimentary, there had been so much sludge under the bridge the past decade that family members had a hard time even smiling at her or answering about how their day was. I tried to tell the family, she has changed again, this is a new person again, please hug her, hold her hand, smile at her jokes. But they were leery. They knew it is only a stage, and it is better for one’s heart to keep it locked.
I dreaded the end for years. There came a time when she could no longer walk without slumping like a rag doll. She had trouble chewing her food. Swallowing pills was out of the question. She could no longer make it to the bathroom or the kitchen. She would call on me constantly for water or a TV channel change.
Then the confusion seemed twice as bad. She refused to believe she lived here. She kept asking for her young daughter, not realizing that the person she was asking for was me. She constantly accused me of lying to her. When she went a day without speaking it was such a relief.
My family didn’t understand why I couldn’t wait for it to just end. Please make it end.
She was so loving so giving, I would have done anything for her. Even take care of her until her last day.