How to Deal With A Loved One With Dementia
Hello! I'm back after a month where life smashed me to the ground!
A friend on Medium wrote a story with this (paraphrased) title:
“How do you cope with someone’s illness when you know there’s nothing you can do to help?”
I answered that question in a comment. Then, I decided to expand it into an article, based on dealing with Dementia with Aunt Pauline, my mother, Joy, and my mother-in-law, Alene. It’s below and focuses primarily on my mother.
I doubt there are not very many in this country who haven’t known someone or had a loved one with Dementia. I hope my story about Joy will help with understanding and dealing with that loved one.
If you’re dealing with a relative with Dementia/Alzheimer’s — at home or in a nursing home — you’re going to have to deal with numerous behaviors that you don’t know what to do about.
I offered advice to a writer on Medium when she asked what to do when you know it isn’t going to help.
That’s Dementia.
First Stage
There really aren’t stages of Dementia, but having been a caregiver for my aunt, my mother, and my mother-in-law over 25 years, I’ve figured out the “stages” based on my experience.
Dementia is basically memory loss.
Every day, the person experiences small losses of memory. I labeled it “Having memory combed away.”
Imagine a fine toothed comb pulled through your brain every day. It won’t remove all memories. It removes something like “every other one.” A memory from decades ago may remain, while a related memory disappears.
First Stage Response
During the combing phase of Dementia, you’ll encounter lost memories in your loved one.
Don’t insist that your memory is correct and theirs has been forgotten.
Take that memory as your own.
When faced with memory loss, the person may believe that the memory is gone, but won’t admit it. Admitting the loss leads to the realization that comes out as, “I’m losing my mind.” Followed by tears and anxiety.
Distract from the tears by asking something like, “Would you like some ice cream?” The distraction is welcomed and allows you to talk about something immediate. “I love ice cream.” Instead of the past, which eventually ceases to exist.
Second Stage
Eventually, memory loss will become evident to the person experiencing it. Memories from recent days will also be lost, and that loss will cause fear, anger, and desperation in your loved one.
This is when you’ll have to have someone home all the time, to make sure she doesn’t leave without telling you, tiptoeing out the door.
Leaving quietly means she’s decided where she’s living isn’t her home. That fear will produce a fierce need to leave and find the home she recognizes. Tiptoeing means she doesn’t want you to talk her out of it. You just don’t understand.
This may occur when someone rings the doorbell or knocks. Opening the door to see who’s there provides the opportunity to flee the house — a spur of the moment decision.
This happened to my mother. My husband and I were both teaching. She’d gotten along well at home alone, watching Elvis movies, doing crossword puzzles, or reading.
We arranged for her to receive lunch every day from Meals on Wheels. Otherwise, she’d eat whatever was sweet, with icing. All of it.
That first delivery increased Mother’s fear of not recognizing home.
When she opened the door and saw a woman she didn’t know, holding a container with her lunch that she’d forgotten we’d told her to expect, she panicked when our dog, Woofie, eased past her for some exploring.
Mother pushed her way past the woman and walked as fast as she could down the sidewalk to the street. From there, she went to the middle of the street and headed west, calling Woofie.
The woman jumped into her car and followed. Eventually Mother tired and stopped, looking around as though she’d been transported to another planet. Woofie was nearby.
The woman opened the back door of her car and our sweet Woofie jumped in.
Mother was coaxed into the front seat. “That wasn’t my house.” She’d forgotten about Woofie.
The woman smiled and said, “I know where you live.” She’d encountered those with Dementia and knew not to scold her.
Escorted back to the same door, Mother released a huge sigh. “This is where I live.”
We cancelled Meals on Wheels. As soon as possible, one of us (I can’t remember which one of us it was that time) resigned from teaching and stayed home.
Third Stage Behavior
Christmas. Some friends came to visit from Houston. They looked through the house at the decorations, and Mother seemed happy to answer questions the best she could when asked. “Yes.” “No.” “Maybe.” But never, “I don’t know.”
Just before our guests left, Mother pulled me into the kitchen.
“These are nice people and their home is nice. But isn’t it time we went home?”
It took a while to convince her that the house was ours and she lived there. She didn’t believe us. We had to show her the way to her bedroom.
The next event left me completely stumped about what to say.
Sunday morning. We were going to church, and she usually came with us. If she didn’t want to go, one of us would stay home with her. Usually, me.
When I got to her bedroom, she glared at me with obvious anger.
“It’s about time you came to tell me where I’m going to live.”
When I told her we weren’t moving, and neither was she, she raised her voice.
“I heard you and Chuck fighting in your bedroom this morning! You’re getting a divorce! I don’t know where I’m going to live.”
We stayed home from church and tried to convince her she’d dreamed the fight, which hadn’t happened. We weren’t getting a divorce. She’d be staying with us.
She didn’t believe us.
The End of My Rope
We spent the day watching a movie, with Mother getting up frequently, wandering through the house, then returning to see if we’d left.
That night, when she went to bed, I promised we’d be there in the morning.
No response. Remnants of the day of anger.
I worried that she’d try to leave again, but she didn’t. Instead, she took an entire bottle of my Rx for sleep, which I’d just refilled.
We found her the next morning in a sort of convulsion, trembling, flailing her arms, and kicking her legs, mumbling. I found the Rx bottle in her bathroom.
We called 911. The ambulance took her to the hospital, where they filled her stomach full of charcoal, among other things, then admitted her to a private room.
When the charcoal came through her, she didn’t tell me she felt it coming. The stench and mess drove me into the hall to call for help. Two aides told me to wait in the hall while they cleaned her up.
I collapsed into tears and the feeling that what was happening to her was beyond my ability to deal with.
A nurse hugged me and said, “Perhaps it’s time for you to think about moving her to the nursing home.”
She was released from the hospital that afternoon, furious and refusing to speak to me or my husband.
We fixed a nice supper we knew she’d like — meatloaf, mashed potatoes, English peas.
She didn’t say a single word while eating. Then, she got up and asked where she was going to sleep. I took her down the hall again, showed her which drawer her gowns were in, then went back to the living room.
I cried when my husband told me, “We have to move her to the nursing home, for her benefit, but mostly for yours. You’re falling apart, knowing there’s nothing you can do to help her, except accepting that she’s losing her mind and will someday forget who you are.”
He was right.
Nursing Home
Our small city has a wonderful assisted living facility, and an incredible nursing home.
When we told Mother she was going to live there, she thought we didn’t love her anymore. That we hated her.
She didn’t believe anything we told her about it being safer for her. she didn’t remember leaving the house several times.
She didn’t remember taking the pills.
“I’m not going.”
“If you’ll tell me what I’m doing wrong, I’ll stop! Don’t make me leave.” Crying in despair.
“You’re going to love the people there. They’re about your age (81), and they’re going to love you!”
We notified the nurses. They and the aides who would take care of her every day welcomed her, and convinced her with hugs that they loved having her there.
The next day. “These people are really old! They can’t even walk! Are you sure I belong here?”
Distraction. “Let’s go to the cafeteria and see what it looks like.”
“They’ve brought ice cream for everyone! It’s chocolate! Your favorite!”
That went on for several months. Then, she fell and broke her hip.
Mind Wiped Clean
She had to have her hip replaced. The anesthesia wiped her mind clean. She didn’t remember the nursing home or anyone there. She didn’t recognize her things.
Everyone frightened her. Except me. She’d been co-dependent with my father. When he died, that dependence transferred to her only child. Me.
For the next six months, I spent more time at the nursing home than at home.
Eventually, she got used to her new room and surroundings. She enjoyed talking to the three “lunch buddies” at their table in the cafeteria, and said the food tasted good.
An aide took her back to her room an hour after lunch so she could have a nap. She never remembered where her room was.
The Next Ten Years
Mother became a part of the nursing home and participated in activities with other residents. I went to visit her every day.
I recognized additional memory loss several times a week. I got there just as “pool noodle baseball” ended. Everyone who played seemed happier than any time I’d seen them before.
When Mother saw me, her smile disappeared. Her angry look made me shiver and cry.
The aide took her to her room, and I left. Seeing me had triggered anger. I never knew why. That reaction never changed.
She didn’t have the will to learn how to walk with her new hip and ended up in a wheelchair.
When she refused to stay in the wheelchair, I asked them to order a Merry Walker for her.
It looked like a big chair made of what resembled white PVC pipes. She could stand up, hang on, and push it, which she loved to do.
She went all over the facility, talking to people, resting or napping, sitting in the chair.
One morning, she climbed over the bar keeping her inside the walker and broke four ribs. There were two nurses within three feet of her. They apologized and apologized for not being able to stop her.
“No need to apologize. When Mother makes up her mind to do something, it’ll happen so fast, no one can stop her.”
I never complained about her care at the nursing home and I always praised the nurses and aides for taking care of her, now that I couldn’t.
During the first five years, I learned to take two steps back in my mind when visiting her. After the visit, tears would begin when I turned toward the exit.
My constant prayer during that time?
“God, please take her while she still knows me.”
But that didn’t happen. The last five years of her life, she didn’t remember me, my father, my husband, or her grandchildren.
When I visited her, she instantly became angry and told me to go away. Once, she told me to leave because her daughter was coming to visit her.
When I made the decision to stop visiting every day, and to simply say, “Hi, Joy!” and not stop near her, the nurses and aides understood.
Finally, the End
By the time she turned 91 on February 13, 2018, I’d given up wondering when she’d stop being afraid of dying and release her soul.
The call came at 3:00 am on April 15, 2018. She’d slipped away, peacefully, in her sleep.
She always hated the IRS. I think she would’ve been happy to die on tax day.
Last Words
I hope this account has given you some reassurance about dealing with a loved one with Dementia.
My most helpful advice?
Get on the train.
Our high school Spanish teacher, Roy, took students to Mexico every year. We were privileged to go with him to Monterrey and the next year, Mexico City.
While on the Mexico City trip, we boarded a train for Taxco, a delightful village.
Roy lived in an Alzheimer’s Unit for the last years of his life. When his wife and son went to visit, they found him sitting in a chair, bouncing up and down.
“Roy, what are you doing?”
“I’m on the train to Taxco.”
He kept bouncing.
She pulled up a chair behind him, sat down, and bounced.
Whenever your loved one is immersed in a world of his own, the best thing you can do is join him in his world.
Don’t tell him, “Dad, you’re in a nursing home!” He’ll respond angrily.
“I am not! Get on the train now or we’ll leave you behind!”
When Mother thought there was a killer in the facility, cutting throats, trying to kill everyone, she didn’t believe me that he’d left.
Mother’s nurse heard our exchange and came over. “Joy, the police came and took him to jail. He can’t hurt anyone now.
Mother released a huge sigh.
If necessary, ask for help. They’ve been through everything. They’re always glad to help.
Don’t feel that you weren’t able to counter your loved one’s fears.
Just get on the train.
Hugs,
Linda