Have enough courage to trust love one more time and always one more time.
Maya Angelou
Category: 31 Days (Page 2 of 16)
My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
There is a sign by the door of my mom’s room with a list of things to ask her about: her husband and three daughters, her 13 grandchildren, her love of ice cream, her travels around the world, and her Michigan roots. The frame holds several pictures of her doing her favorite things: she is beaming with my dad, eating at a restaurant; she is traveling, bundled in a huge coat and hat, standing on top of the Great Wall of China; she is grinning with her daughters, on a carefree trip to the wine country; she is with her family, standing in the middle of the crowd of her children and grandchildren.
Through the door, there’s a little wardrobe with her clothes and shoes on the left. On the right, a heavy door opens to a bathroom with a large walk-in shower, equipped with handrails and plenty of room for an attendant to help her; a sink and cabinet with her toiletries neatly arranged; and a toilet with a bright red seat and an emergency pull-cord nearby.
Around the corner, her little twin bed hugs the wall, a quilt from home covering it. A purple fleece throw with knotted fringe that we made together waits folded on the end of the bed for chilly days. There’s a wing back chair from home, and a round table next to it. The table holds a vase of fresh flowers, her Bible and devotional book, and a few tracts she lays out just in case someone is interested. There’s a lamp behind the chair for reading, decorated with several beaded necklaces that she made with visitors who came with a craft to do. On the table, my dad leaves notes for her with reminders about upcoming visits from friends and family, hair and nail appointments, and special outings. He also writes things down on a paper calendar, giving her a sense of the days and months.
There are some baby dolls that she likes to dress now and then, and a stack of photo albums my sisters and I sent her, plus a few from home. She has books, games and crafts stacked on a shelf, more for decoration than activity. There’s a little radio on a table by her bed, beside pictures of her with my dad at their 50th wedding anniversary party. It’s cozy and homey enough.
Outside her room and down the hall, there is a large living and dining area in the center of the building. Overstuffed chairs and couches face a large stone fireplace with a glittering, simulated fire. A TV hangs over the mantle. In the evenings, there is usually an old TV show–The Dick Van Dyke Show is a favorite–or a G-rated movie. Meals are served family style on a very regular schedule. My mom seems to like the food, and we can eat with her if we let the cook know ahead to make us a plate.
Beyond the dining room is a game room that doubles as a hair salon. Once a week, someone comes to style the residents’ hair. My mom has had her hair “done” weekly for as long as I can remember, so continuing her routine here makes her feel more at home. We like to work puzzles or play dominoes at the table; my mom is happy to let us take her turn for her. My dad brings a travel DVD player some evenings and they watch their own movie together there in the corner.
It’s a new life for all of us. When I go to visit, sometimes it takes her a minute to place me, but she always knows who I am. When the kids or my husband go too, she knows she knows them, but can’t always find a name. A few times over the past year, she has not connected with my husband; we weren’t sure she knew who he was. Last Mother’s Day, we went to see her, bringing ice cream and a cyclamen plant, like the one she always had one on our kitchen table. When we walked in, she stood up and exclaimed, “Steve! I haven’t seen you in so long! It’s so good to see you!” A Mother’s Day gift to me–a glimpse or my mother’s old self.
Over the last 18 months, we planned our daughter’s wedding at our cabin. It was an event that my mom seemed to be able to remember, asking about it when we saw her. She was excited about our wedding-dress shopping trip in Denver and the shower pictures we showed her. I worried, though, that she would not be able to attend the wedding.
My dad takes her to church and lunch every Sunday, and to a meal or ice cream other times during the week. She enjoys getting out and even meeting with old friends occasionally, but big trips aren’t realistic anymore. A long, bumpy shuttle ride, crowds of unfamiliar people, and the loud music and dancing would be disorienting and exhausting.
My dad decided to bring her. He didn’t want her to miss this special family event. I was happy, but nervous. If she did not do well, it would ruin the day for my dad. When they arrived, she looked uncertain and confused. I only had time to give her a rushed hug before the ceremony started. When I talked with her again after the ceremony, she had brightened up. She was remembering some old friends, and enjoying seeing her family all together. She was dancing and eating cake. She was really there.
These little windows into the person we love and miss open up once in a while. The little pockets of clarity that give us a bit of mom back are called by moments of joy by people who work with people affected by Alzheimer’s. We try to trigger those moments by reminiscing with her and showing her pictures. My dad noticed that when she’s around people who love her, her memory and engagement improves. It’s unpredictable, but when the window opens, it is a shimmer of joy in a bleak landscape.
My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
Almost two years ago, my mom moved into a memory care facility near my parents’ home. Taking care of her at home had become too much for my dad to do alone. After hiring help to come in during the day for a few months, they decided that wasn’t the right kind of care for them. The other option was a full-time, live-in program.
It was an agonizing decision. My parents had made their home together for 58 years.
Before the memory care move, I went to stay with them as often as I could to help, and I experienced for a few days at a time what my dad was living with constantly. Nights had become long ordeals. It was gut-wrenching to lie in bed, desperately hoping she wouldn’t come into my bed and beg me to help her. I was afraid to get up and go to the bathroom, fearing that she would be waiting for me in the hall, hunched over, so small, her hands reaching out to grab me. “Please, Judy, please help me.”
But there was no way to help. She would tell me her terror, her guilt, and her fear, but she could not believe that she was safe and loved, could not rest, and could not break out of her distress. There were a few tumultuous months. Her suspiciousness increased, making her sure that we were trying to get rid or her or harm her. She endured trips to the ER and stays in the hospital for infections.
My dad’s physical and emotional exhaustion wore him down. I worried that it would break him and he would end up in the hospital too. I was losing both of my parents. They were drowning and I was too far away to save them. My sisters and I flew out to Colorado to help as much as we could, but it wasn’t enough. We started discussing finding a place where my mom could live and receive the day-and-night care that she needed.
My dad found a small, family-owned facility that they liked near their home. The director, Deborah, is compassionate and experienced with Alzheimer’s patients. My dad started the process of enrolling my mom, but was unsure how he would coax her to leave home and move there when the time came. Almost every time my dad, sisters and I tried to talk about the options, she appeared out of nowhere, eyes shifting between us, sure that we were plotting against her. She must have been lurking around the corner, listening. She knew something was happening and she wasn’t cooperative.
One day, my dad was ready. The constant energy drain had become completely overwhelming. He got in the car and pulled out of the garage into the street in front of the house. My mom saw him out there and was afraid he would leave her, so she hurried out to the car and got in. “Where are we going?” she asked.
“We’re going to Deborah’s house.”
It was an adjustment, but my mom settled in, and my dad finally caught up on his sleep. He visited her every day, assuring her that this was best for now. At the memory care facility, the residents’ world is kept intentionally small and predictable. There is nothing to decide or plan. The medical staff adjusted her medications to meet her needs better. Her anxiety quieted, and she slept at night. When the fear or confusion bubbles up, the caregivers know how to distract and soothe.
I began to have hope that we would make it to the other side of this crisis and find normal life again–even though it would look very different.
My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
As the Alzheimer’s tunneled deeper into my mom’s brain, the changes became obvious. She was still able to carry on a conversation and act normally in many ways, but she had become childlike and dependent.
A couple of times, my dad had to leave on a trip, and Mom came to stay with me while he was gone; it became too hard for her to stay home alone, and I was concerned for her safety. During her stays, she followed me around the house, asking to help, wanting to do something useful. She was restless, looking for something to do.
To keep her occupied, we worked together on albums with pictures from her childhood and early years of marriage. She still remembered the people and places from long ago. We separated the pictures into piles, sorting them by family and year. As I was taping them down and writing the names and dates she told me, she picked up a pile and started going through it again. After I moved it away from her, she picked up another one. When I wasn’t looking, she started pulling out the pictures she didn’t like and putting them in the trash. I tried to explain that I wanted all of them, but she couldn’t understand why. I scrambled to get the pictures into the book before she undid all our work.
She worked with me in the kitchen, too, happy to do dishes and other tasks, as long as I only gave her one at a time. If there was more than one step, she lost track. She has always loved to iron, so I set her up with the ironing board, iron and the Niagara Spray Starch that she likes, and gathered every shirt I could find that could be pressed. She ironed happily for a long time.
It reminded me of doing projects with a toddler. So funny and sweet, but because it was my mother, so heart-breaking.
In groups, she smiled and looked pleasant, but I could tell she wasn’t sure what was going on. Something changed in her eyes; even in pictures, they looked distant and flat. We had a 50th birthday party for my sister at our house, and my mom said to me several times, “Judy, is this your house?” She stopped one of my daughters during the party and said, “Who is this party for?”
Her senses began to betray her too. When we were out to lunch at a local barbecue place, she was convinced that something was burning, even though my dad and I assured her that we did not smell anything. Food tasted and smelled strange or had no flavor at all.
She complained of an almost constant headache, but the doctors could find no physical cause. It dogged her day and night. Sometimes when I asked her about it, she would say it was quiet. It must have felt like a banging, a disorienting din. Eating hard foods gave her some relief; she told me that the “crunch, crunch, crunch” helped.
My mom knew something was happening, but she did not understood what it was. I’m afraid she thought that it was her fault, and that she needed to try harder to think better, as if she could will herself out of her cobwebby confusion. She spent a lot of time agonizing over why she couldn’t think right, and why this would happen to her now when she was supposed to be enjoying her Golden Years with Dad. I don’t think she ever believed that her mind was being stolen away by a disease.
I wish we could have stayed in this relatively easy phase longer. Alzheimer’s is progressive, but there is no real timeline. Changes can come quickly or slowly; it’s impossible to gauge where we are in the process. We only know that it will get worse.
I knew changes were coming again when my mom’s anxiety began to grow, pushing almost every other thought out. Fear, suspicion and guilt turned most conversations into desperate pleas for help. She started using a different voice, high and quavering. Even her faith couldn’t break through the neural pathways blocked and crusted with dementia. False thoughts flitted across her consciousness to torment her, like the twinges of restless legs that make the sufferer twitch and keep moving, unable to rest.
She seemed to shrink. She became so thin; she stopped eating normal meals, preferring candy and ice cream, and then only little bites. Her thoughts seemed shrunken too, down to the bare bones: Help me. Don’t leave me. I’m sorry I was so bad. I’m sorry I hurt you so much.
When she couldn’t make calls anymore, we decided to end her phone service. I didn’t get around to actually cancelling it right away, though, and one afternoon I was walking though Safeway and my phone rang. The screen said “Mom”–a caller ID I never thought I’d see again. I answered it, expecting to hear my Dad’s voice, using her phone for some reason. But it was my mom’s voice I heard, not the little scared voice, but her normal voice.
–Is this Judy Elizabeth Sunde? I mean Hanawalt! Of course I know it’s Hanawalt!
Yes! Hi Mom! How are you?
–I’m doing fine. Just wanted to hear your voice. It makes me feel better. How are all the kids? How is Steve?
Our conversation went on for a few more minutes. I kept asking her questions, not wanting to hang up, trying to stay suspended in this odd, rare moment of lucidity. I wished this could be reality instead of the new one I was trying to accept.
My 80-year-old mother has Alzheimer’s, a brain disease that causes a slow decline in memory, thinking and reasoning skills. We started noticing early signs of dementia in her about six years ago. It has not been an easy journey for our family, and it has been different for all of us. This is my perspective on how the changes affected my mom and the people around her that love her.
The first clues that my mom was changing were small, and it took us a long time to piece them together and understand what was happening.
She was always a busy person, never without a project or a task: she loved to write, work in her home and garden, knit, read, travel and host gatherings at her house. I never knew her to be bored or idle. When the changes started, it seemed like she had lost her confidence; she wasn’t sure what to make for dinner, what to pack for a trip, or what book to read. She asked me for suggestions and ideas, writing them down and intending to do better, but she couldn’t seem to get started. We thought she needed some motivation, or some better planning.
Sometimes, she called my sons by my cousins’ names, or my daughter by her sister’s name. She asked questions over and over, so innocently, with no idea that she had asked the same thing just minutes before. Her smart phone became a puzzle; she couldn’t remember how to look at photos, open her email or check Instagram. She wanted so much to spend her time doing valuable work, but she was having a hard time with the tasks.
One Sunday afternoon when my parents were visiting us, we went to Golden Gate Fields to see the horses run. “I’ve never been to a racetrack before, have I?’ she asked me. I reminded her she had, many years ago when she and dad took my horse-loving daughter on a trip to Kentucky and went to see a horse race. “Oh, yes.” she said. A few minutes later, the same wide-eyed question, “I’ve never been to a racetrack before, have I?”
Reading had always been a favorite pastime, but she began to read the same page of a book over and over, making little progress on the story. She spent hours looking at her calendar, flipping pages back and forth, writing things down, but she couldn’t grasp the big picture of when her appointments were, or when I was going to come visit again.
My dad and I played a game of Yahtzee with her one evening, laughing and having a great time together. At the end of the game, she did her own adding to tally up her score. According to her calculations, she won the game with an amazing score in the high 800’s. I looked over her score card; her adding had become mere guesswork. Instead of explaining her mistakes, we congratulated her on her win.
One day, we were driving to Boulder, and the mountains in the high county had snow on them, but the closer Flat Irons were bare. “Isn’t that strange,” she asked, “that the higher mountains don’t have snow on them, but the lower ones do?” Her eyes and her mind were playing tricks on her, making spacial relationships hard to understand.
When I was alone with my dad, I asked him if he was noticing the same things. He was, but we were not yet able to put it all together; neither of us wanted to face what might be ahead. I was beginning to realize, though, that she was slipping away.
Though I was losing my mother, at the same time, I had more of her than ever before. When she lost her ability and ambition to do all the traveling and working that kept her so busy, she had time to sit and talk. Her short-term memory was spotty, but her memories of the past were full and vivid. When we were together, all she wanted to do was be with me. There was no where she needed to be, and nothing to hurry off to do. It was just a moment, a calm before the storm. I am so grateful for that short, sweet time.
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