Night Moves: How my mom tricked Alzheimers.
Night Moves: How my mom tricked Alzheimer’s by visiting me in my dreams.
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My mother is probably a lot like your mother: older, loving, and not her younger self. I know when you look at your mother you see the eyes from your childhood, the wrinkles created by her familiar smile. When I look at my mother, I see her high cheekbones and the crooked incisor that reminds me her parents didn’t have money for braces. But, her Alzheimer’s disease is like an overlay of thick fog she can’t emerge from and we can’t see through. She’s there, I know she is, but she can’t get out.
Yesterday, my daughter said my mom came to her, whole and well, in a dream. She said my mom held her and they spoke about how they miss each other.
At least once a week, I dream about my healthy mom too.
In my dreams, we are deep in conversation before I realize that she is entirely well. We stand in the living room and she is the woman from 2008 when we visited New York together. The last time I saw her whole.
I do not say, “How is this happening?” Nor will I proclaim, “You are better!! YAY!” I am too afraid that her skittish mind will go back to playing hide and seek and I will go on having a mother, but also not having one. That’s how dementia is: you get to keep your loved ones but the person you loved is nowhere in sight.
My dreams are an exercise in the game: Don’t ask don’t tell. My mom isn’t aware that she yanked a handful of my hair while I helped my dad change her bed and I certainly don’t mention bring it up. I also don’t mention that my dream-mom is the mom of ten years ago. Twenty years if you count the ten years of slow decline; the dissolving 7,300 days before she forgot everything. Even me. (I did a Listen To Your Mother performance on that here).
You might think being yelled at and forgotten is the hardest thing about having a mother with Alzheimer’s. But, It’s not. The hardest thing is to see the woman who was a professor of nursing, who spoke in Washington DC for the rights of Nurses, who I called for help with parenting, can no longer do even one thing from her past.
No, wait, I am wrong. She has kept one thing from her past. Her ability to fold towels.
I wonder if my dreams are my mother reaching out across the fog. I don’t think so though. Not because I don’t believe in that sort of thing but because she would not be happy like she is when we speak in the middle of the night. She would be furious about this towel-folding.
“Towel folding,” she’d say with pointed disgust. “Why not ironing, grocery shopping, or even sweeping?” If you’re going to put me in hell why not put me all the way in? Give me all your domestic chores.”
My daughter and I both want to believe my mom is coming to us in our dreams. We want it because otherwise what is the point? She must be in there holding on to her life, folding towels for a reason.
So, here’s what I’ve decided. My mom has figured out how to trick Alzheimer’s. Every day in effect, she says, “Sure, I’ll fold your towels, I’ll undergo the indignities of having a full-time caregiver, of losing memory and choice and self. I’ll play your Alzheimer’s game but when everyone, even the disease sleeps, I will make my midnight visits.
I will use the fact that my body won’t give up. I will transcend the boundaries of understanding. I’m going show my people I love them even if it’s only in their dreams.
“So,” she says, “You horses-ass of a disease. I am going to sit here and fold towels until I can’t. When that skill goes away, it won’t matter one bit because you can’t take away my night moves ”
And, off she will go to visit another love.
You can read more about my mom and memory here.
I Like You Just Fine When You’re Not Around is a funny and sad story about the people we love even when disease makes it hard.
Beautiful words, Ann. It is a long an painful journey for everyone in the family. My father has dementia and at 76 years old, he is physically fit and looks pretty good, but over the past 10 years he has lost all memory. He knows very little, is unable to have conversation, follow a direction or be alone. You are lucky to have your dreams to remind you of who your mom was. After so many years of the “new” person, it can be hard to remember they way things were…
Jennifer, I feel your pain and it just feels so very unfair. It’s been a long road. My prayers are with your family.
I too have been having dreams of my mom. She is in a dementia wing of a nursing home and it is very difficult to communicate with her now. She sleeps much of the time and when she is semi awake I can’t understand what she is saying. I have had multiple dreams of her and she is healthy and happy! It doesn’t feel like a memory. It feels like it is her communicating with me in real time. Thank you so much for sharing your experience!
That is a great way to look at things, Ann. I’ve taken care of many Alzheimer’s and Dementia patients. I feel it is the worst disease there is. I can’t imagine beingvtrapped inside my mind and body unable to communicate with anyone. Much love to you, caretaking of a loved one is no easy task.
I’m with you, the worst disease ever. Thanks for your thoughts Betty 🙂
It’s a solace to know we are not alone.
What a story! I wish my husband would come to me whole in dreams. He is my husband, but not him. Every day he seems to lose something to Alzheimer’s / multiple dementias at age 68. We are both trapped with this insane disease… I know he can’t help it but I get so frustrated. He knows us and that he has it. Your story gave me a little smile. Books are my solace.
Oh Pam, I am with you. I’m so sorry that you have this in your lives. I want “science” to drop everything and figure out Alzheimer’s. There are so many suffering. My thoughts and prayers are with you.
Ah, this is a fresh take on a much-too-common issue. Night moves. I like it. Your mother must be a real character. And, where I come from, that’s a good thing.
🙂 . Thank you….she was and is. 🙂
Alzheimer’s is heartbreaking to see. My father suffered, but joy could be found in the little things he said or did, that was part of his former self. He never liked green veggies, and that stuck with him in his days of dementia. If his meal had a green veggie, he pushed it away. His mannerisms, idiosyncrasies were present here and there. Even though he wasn’t the man he was, he was still there. And love never falter, from him or from those who were a part of his life.
It’s amazing how their preferences stay with them. My mom hates having her feet touched, had a huge sweet tooth and liked to sing. All of that is intact. I’m so grateful for it all.
A beautiful and loving story Ann. I recently lost both of my parents. I wish they would come and visit me in my dreams. I do believe in visitation dreams. My 28 year old son has been gone for 9 years. He used to visit me that way but it’s been a while now.
We have dreams and nightmares. It seems a failure of imagination that we only have thiese two words. There must be other languages in which there are more words for different kinds of dreams, just as the Scandinavians have many more words for snow.
A friend’s mom had Alzheimer’s. She didn’t fold towels anymore but she still liked to wind balls of yarn. So that is what she did. It was their “together” activity. She would crochet and her mom would roll yarn.
I admire your outlook and courage in dealing with such a devastating illness. I was “sandwiched” in when my mother-in-law had Alzheimers, and my father had a stroke. My son was just a teenager, and I was teaching in the city. I felt like a rubber band. My husband felt totally defeated, and so I tried helping with my Mother-in Law’s care as best I could. We hired a woman to stay with her so she could be home, until it was too dangerous. I do have memories in my memory and heart of her kindness and caring when she was well. I think it wonderful that you are so positive!!
Well said. I used to imagine that when my dad wasn’t “present” during our visits, it was because his real self was off checking on people he loved.
Thank you for this, Ann. After reading I immediately called my mother-in-law who’s in the earliest stages. It’s frustrating to talk to her but I know I need to have conversations now, before it’s too late. xoxo
Oh, it’s so hard. I’m glad, I took my mom on a trip before she was too impaired and I thank my lucky stars that I did that.
I have never had a family member with dementia, but my mother had delirium secondary to a urinary tact infection about a year before she passed. The symptoms were similar and the initial dx was a sudden onset dementia. Fortunately, the dx of UTI was made and she recovered. It was however, a very dark glance into what you are going through. You have my prayers. You are right, she is still in there, but she can’t get out and you can’t get in.When my mom, “came back,” she said that she was aware of us being with her and talking to her, she just could not respond. On some level, your mother knows how much you love her and is comforted by your interaction and care.
Thanks Dr. Keith 🙂 .
Up until very recently, my 92 year old mom was mentally sharp but her body was failing. She has lymphoma, kidney disease, macular degeneration but she still reads on her kindle (set on the largest font) and loves to talk politics. I live 800 miles away and usually spend 3 weeks with her every other month. She hates what her life has become and looks forward to joining my dad in Heaven. We are now starting to see a decline in her mentally so most of our conversations are about when she was a child and about people long gone. I feel like I am losing my mom a little more each day and I am so sad for all of you with family with Alzheimer’s.
Susan, you are a wonderful, wonderful person. I’m so blessed to have met you. Thank you for telling me this. We are all so lucky and unlucky in life. Our family and friends make it all better.
Ann, I would be a mess without my sisters and my friends (and that includes many Facebook friends who I have never met but who mean the world to me). To me the important thing to remember as family members decline, is to strive to remember the people they were not the people they have become. Thank you so much for the article on your Mom. Now it’s time for me to head over to the nursing home.
My Mom died on October 19, 2011. We lost her a long time before. However, during the transitional time when she had started to lose a lot of time, she had this most amazing ability. On her birthday, we took a cake to the care facility. Someone asked Mom what she had done that morning. I wanted to pinch that person! Not to worry. Mom replied: “I’m under no obligation to tell my adult children how I spend my time!” Ha!
hahaha I am under no obligation! What a pistol and what a great memory. I’m going to tell my dad that one.
My world almost collapsed when I concluded that my 50-year-old sister showed signs of dementia during our frequent phone conversations between my home in CA and hers in Pittsburgh. Word finding and repetition dominated our chats. Her husband, never a favorite of mine, insisted that she was fine or even more worse, drinking glass after glass of wine at 10 am.
David and I made the decision to move back to Pittsburgh. Carolyn needed an advocate, and I was the obvious choice. Having been so close all our lives, I planned to spend as much time as possible with her until I realized that her husband isolated her from me by doing things like hiding the phone. A few pop-in visits were all it took for me to realize how dire the situation had become.
My brother and I, after consulting with our attorney, planned to take legal action against my BIL for spousal abuse when he abruptly died of a heart attack. I immediately had Carolyn evaluated by gerontologists at the University of Pittsburgh Medical Center. By that time, she was already in the advanced stages of Early Onset Alzheimer’s.
EOA differs from the Alzheimer’s/dementia with which we are more familiar. It is genetic and can strike a person as young as 25. My paternal grandfather had been diagnosed with “hardening of the arteries” when he was only 58. For those too young to remember, this diagnosis was a catch-all for people who in reality had dementia or a completely debilitating stroke.
I tried to keep Carolyn in her home with 24/7 nursing care as long as possible. Even that plan was thwarted by her mentally unstable teenage daughter. She committed elder abuse on multiple occasions, even twisting Carolyn’s arm to the point at which she suffered a spiral fracture. The doctors did their legal duty and reported this incident to the police. Child and Family Services had already been involved because of prior incidents, and I expected my niece to finally receive serious consequences. But, no. The so-called experts ignored the opinions of doctors, police, nurses and me in favor of an unstable teenager.
I had no choice but to find an Alzheimer’s facility for Carolyn, and I picked a winner. A faith-based home luckily had a sudden vacancy, and I quickly moved Carolyn in. I visited three times each week and came to know the most amazing women (and a few men): the aides. They treated the “residents” (never patients) with dignity, respect and love. Unless absolutely necessary, residents were not drugged (I visited places where people sat like zombies staring into space – heartbreaking), and they were kept busy with cooking, parties and – folding laundry! A group of elderly women sat around a large table with an aide each day and folded sheets and towels as they had once done at home. Those with dementia find great comfort performing tasks which they remembered from years ago.
It was fascinating to watch the human brain, even one with dementia, at work. People who couldn’t remember what they had for breakfast would relate minute details of their weddings that occurred decades earlier. Many women tended lovingly to baby dolls, singing lullabies and rocking them. I knew that dementia wipes out short term memory, but to actually witness this phenomenon was incredibly interesting. For the most part, residents were happy. They loved the Friday afternoon parties where they could sing and dance. Because Carolyn was at least 20 years younger than the other residents, she was frustrated because she didn’t know the words to “Let Me Call You Sweetheart” and other vintage tunes. The aides rectified that situation by asking the entertainers to throw in some Beach Boys and Jimmy Buffet. How she loved to belt out “Margaritaville”!
As time passed, Carolyn’s condition worsened, but she still knew me. By the way, none of her myriad of so-called friends visited her even one time. Did they think she was contagious? The sad thing was that she asked me about them and accepted my dishonest answer.
After two years, she had a sudden psychotic breakdown and was transferred to the hospital after a brief stay in a mental facility. I prayed for the end. For all intents and purposes, she had left this earth, with only her body remaining behind. I have never been so relieved in my life when I got an early morning phone call. Her suffering during the last two months of her life was over.
I look back on that time 15 years ago with so many emotions. Because of Carolyn’s daughter, we had problems that I hope were unique. My brother and I were in Family Court countless times. The daughter and the family who took her in had one interest only: getting their hands on Carolyn’s money. Our legal bills were $500,000, which (great irony) were paid by Carolyn. The ultimate cruelty occurred when they subpoenaed her to testify against me after prepping her for a week. The judge put the kibosh on that plan. I will never see these people again after the hell they put Carolyn through.
I found the most wonderful home nurse. Mary was like a member of the family. She too was subjected to the cruelty of Carolyn’s daughter, but she stayed until I moved my sister. The Alzheimer’s facility was wonderful. Despite serious impairment, residents were happy because they were surrounded by loving aides. I always felt that the aides had a calling because tending to a person with the brain of a young child was not always pleasant.
I remember the day I went to Carolyn’s homey room and saw that all the mirrors were covered with paper. All of a sudden, she didn’t recognize herself and became terrified of a stalker.
Most of all, I remember sitting in the lovely garden with cups of lemonade. Carrying on a conversation was virtually impossible, but Carolyn loved looking at the flowers and watching the hummingbirds. One time, she plucked a single blade of grass and repeatedly said, “Pretty.” I can never thank the staff enough for making her life as happy as possible. What an enormous burden they lifted from my shoulders because they, too, had to deal with daughter.
I just realized that I haven’t talked about these years in such depth for a long time. As one gerontologist told me, “When the diagnosis is first given, the patient is normally lucid enough to understand it and not surprisingly falls to pieces. Family members and friends must be supportive and offer comfort. As time passes, the patient no longer knows she is sick. At that point, loved ones typically become distraught and overwhelmed. It is important that they take care of themselves, get professional help if needed or join a support group. Caregiving can drain the life out of you.” How spot on this doctor was. My therapist helped me navigate the rough waters. But I will always treasure my sister. She remained my best friend until the very end, often impulsively hugging me and saying, “Love.”
There is really only one word for this story and that is, “Love”. Your sister was so blessed to have you. So many difficult years. We have a wonderful caregiver that helps my dad in their home. We are so very lucky. I read and re-read this and throughout all I could see was your enduring love. Thank you so much for sharing this. You are amazing.
I’m angry about what this disease does to people/families. I’m sad for the difficulty that your mom and family must endure; I do, however, love your story (stories actually) Hugs!! Whether your mind, body or both fail – it certainly is never easy for the person or for family and friends that loves them… part of life’s journey!!
Cancer claimed my mother and father when I was just five and sadly I don’t have memories or dreams of them.
Cherish any moments you can – prayers of strength to all…
Rock on~Eleanor Ann Smith Wertz
Rock On Donna, I just love you.
After witnessing and being a part of some miraculous events as a firefighter for twenty-eight years, I am totally convinced of spiritual connections that science can’t explain. In addition to my firefighting spiritual awakenings, I had a brother commit suicide by opening his chest with a 12 gauge shotgun and he came to me many times in my sleep to tell me he was fine and not to feel bad. I believe that is your mother reaching through the fog in the middle of the night when the analytical side of your brain is quiet.
Oh my gosh, thank you so much!!
I lost my mum to dementia this January, right up to the final stages of the disease, and like you, I’m pretty sure that she visited me in my dreams. My dad also said that he was dreaming of her too. The last week of her life it happened more. She hadn’t communicated for a couple of years before the end and in her last week her body basically refused food and entered the shut-down phase. You could obviously say that she would be playing on our minds at that time and yes that’s correct, but there’s also an aspect that I really do believe that she drifted between being in her body and leaving it, I really do think that she visited us in our dreams.
After her passing and between the funeral I had one very strange physical experience which I took as my mum saying shes ok in her new world and that she loves me. Since then I’ve had nothing happen to me or a dream of significance. I like to think that she is recuperating, recharging her batteries again after all that shes been through and I really hope to feel her around me again when she’s ready.
“And, off she will go to visit another love.”
Wow. Thank you for this line. I will treasure it.
My dad died unexpectedly last summer and I had to move my mom into a nursing home due to her moderately severe dementia. At 63 and 65 respectively, they were both quite young for their fates. At 24, I can’t help feeling like they were both robbed from me before I could truly know them.
I’ve always had vivid dreams. But since Dad’s death several months ago, they’ve both been coming to me. Sometimes one at a time, sometimes together, sometimes angry at each other, sometimes me angry at them…and while I know it’s all a figment of my subconscious imagination, these dreams are the only way I can be with them, with them fully conscious and present. Thank you for this beautiful meditation on loss and the power of dreams. Sometimes they are upsetting and difficult to cope with, but that line will help me so much going forward and I hope I keep dreaming of my parents.
I am so glad you found this if it gave you a little solace. I’ll never recover from my mother’s having to live with Alzheimer’s and losing her that way. My father died unexpectedly fairly recently and we had to move my mother to hospice. So, we may have lived a parallel sadness. Mine was much older. I”m so very sorry yours were so young.
The dream thing is fascinating. I want to believe in their reality, as in their energy of love remains. However, I rarely dream of them after their deaths now. Which is also fascinating. I too, hope you get to keep dreaming of them.
I write about my parents a lot and often can’t finish an essay. This is another way I keep them I think.
Thank you so much for reaching out, you gave me moments of thinking of my parents this morning.
I’m grateful for that.
Which much love,
[…] And then, out of the ether, my mother’s voice came to me. She said, “Annie, what if you decided to enjoy this moment?” (More of my mom here) […]
My mom is very far into dementia/Alzheimer’s. Twice recently I have dreamed about her (and I don’t remember ever having a dream with her in it in my life.) The first time, she was young, about 20, she was on a balcony with a beautiful view. There was another woman there but she had her back turned. My mom said, “This woman is helping me talk to you. I wanted to tell you to give my husband a hug.” – Note, she didn’t say “your dad”. My young mom said “my husband!” Then a couple days ago, she came back again, in her 20’s, curling her hair up at the bottoms in the fashion of her day. I believe this. My mom is visiting me.
Right. I think you have that exactly right. It was your mom! I love this–I’m so glad to hear it.