My elderly mother sat across from me at her kitchen table, staring down at the sliced strawberries in her cereal. I noticed she was nervously stirring the milk with her spoon, unsure of what to do next. “I can’t eat this,” she sighed, “I can’t swallow it.” Her eyes met mine. A petrified little girl stared back at me.
“That’s okay, Mom,” I said, holding back tears. I helped her up from the table and we shuffled over to her favorite rocking chair. I tucked the blanket that she had knitted herself around her waist and rubbed her forehead to calm the anxiety storm sure to come at any moment.
“I miss eating,” she said and began to cry. My mother was in the throes of end-stage Alzheimer’s Disease. She had barely eaten more than a half of a piece of toast in days. Water was the only thing she could swallow, but even that was proving challenging. She took to keeping a glass full of ice next to her at all times. “I’m dehydrated. You need to help me, Darla,” she pleaded every few minutes. She was losing weight rapidly and becoming more frail with each passing hour.
I knew the end of her life was on the horizon. My grandmother, my mother’s mother, had died from Alzheimer’s when I was pregnant with my son 18 years ago. My gram stopped eating weeks before she died in a nursing home. Now I found myself desperately searching google: How long can a person live without food? How long without water? How does someone with Alzheimer’s die? Is starving to death painful? I spent hours and hours scouring the internet for articles on dementia. I needed to know exactly what was happening to her body and brain and why. As my mother’s anguish and physical pain increased, I found myself adrift in a sea of darkness, pleading out to God to guide me so I could help her.
Late one night, desperation had gripped my heart. I sat alone in the bathroom sobbing and praying. What can I do to help ease her suffering, God?
Suddenly, in my mind’s eye as clear as a bright blue sky, one word appeared, slowly written in sparkly gold cursive letters:
Then I sensed a voice not outside of me, yet not my own repeat firmly: LOVE.
Love? How do I love her? The choice was mine. Love or fear.
My mother and I had a contentious relationship our entire lives. Struggling with her own demons of untreated anxiety and severe depression, she was not the typical mother. She was often cruel and seemed to delight in berating or humiliating me in front of everyone. She wasn’t supportive in anything I had any interest in, but went out of her way to verbally assault me as a kid. More than a few times she had thrown things at me in a spate of anger. I often felt as if she hated me.
She was rarely affectionate in a typical motherly way. By the time I was in high school, I felt nothing but anger and resentment toward her. All of my friends seemed to have normal moms that nurtured and cared for them. Some even described their moms as their “best friend”. After my father suddenly died when I was in college, I often told people I “had no parents” as I felt that he was the only one who supported and cared about me.
Later on in life, I came to realize her severe anxiety and depression affected her parenting. She had also undergone trauma as a child and had her own struggles. I’m not excusing her behavior or condemning it–I simply see her as a human with flaws. Like me. My mom had failings and I have failings. She is me and I am her. This fact escaped me until she left this earth. Now I see all the beauty she had deep within, all the wisecracks and witty one-liners, all the love she had and did try to show me in her odd ways.
Left: Me, my mom and my older brother. Right: Me and Mom
Yet I still had one last chance before she died. It was time for me to show her my love. To reach out and comfort the one who failed to comfort me as a child. To sweep aside my deepest fears of pain, rejection and suffering. To forgive and let go of the past. To love her unconditionally.
My mom taught me many lessons, and this would prove to be the most profound.
Meanwhile, my mom needed help, and because of the pandemic and lack of nursing care, her family would have to step in. The Dementia Brigade arrived in the form of my brothers. One flew in from Florida and the others who live locally all offered to help. We had to rotate shifts as she couldn’t be alone for one second.
We gathered in a bedroom and whispered our plans. “Okay, you take the night shift, then Darla will sit with Mom until noon, then David, you take the afternoon.”
We managed to do this for a few sleep-deprived weeks, all of us working full time jobs on top of it.
Out of her confusion and frustration with the disease, she started to become combative. Once in the middle of a bitter cold night, she tried to escape out the door in her bathrobe. My older brother was on the night shift and I could hear them yelling next door as we lived in a duplex. When I arrived bleary-eyed, she was combative with my brother and yelled she wanted to die and just to let her go.
At this point I was helping her daily to change her diapers and clean up as a nurse might do. One night the intense anxiety meds she was on left her dizzy and she fell into her dresser with me standing right next to her, unable to catch her. She had smacked the back of her head on the dresser and I feared she was badly injured. I tried to lift her up but couldn’t and had to yell for my husband next door to help.
Embarrassment and anger flashed in her eyes. “No, Darla! Leave me alone!” as she tried to get up herself. When I tried to calm her down, she began slugging me hard in the stomach and arms. The sting of the physical pain she inflicted on me was nothing compared to my sadness that she didn’t even know what she was doing anymore.
Alzheimer’s Disease is ruthless. It breaks the hearts of the caregivers and the patient. But born from this pain is the truth that love is the most powerful force in the universe.
After her physical outburst with me and many tears, I gently walked her back to her rocking chair and tucked her blanket around her like a baby. I felt the familiar anxiety and fear settling onto me again. After weeks of this, my heart actually physical hurt with stabbing pains from the stress. I sat next to her unsure of what to do next.
LOVE! I heard again in that familiar gentle but firm voice.
LOVE!
I took a deep breath and slowly reached out and began rubbing her back. I felt her body relax a little as she slumped down in her rocking chair. I spend hours that day holding her hand or rubbing her back when she was in pain. The very thing I yearned for as a child but never received from her.
And a blessing came not soon after. That last night I had with her at home was amazing. She was suddenly back to her old self. Happy even. Smiled once. Talked about politics and football and food and cooking. She got up to go through the box of yarn that was collecting dust. We watched her favorite TV sitcom Mom (“Too much sex in that show!” she yelled.) She even weakly declared that she wanted to knit a blanket for my daughter, Julia.
Left: Julia and Mom years ago. Right: Julia and Mom a few weeks before her death. Only Julia could get my Mom to smile in her last days.
I knew this moment with her would be one of my last. The next day was one of the hardest of my life. I was to move her to Avita, a memory care assisted living facility where she would finally receive proper treatment in her final days and go on hospice care.
I drove her to Avita by myself after packing up all her things and hiding them in the back of the car. I had to lie to her about where I was taking her, but she knew. She knew. The night before in a moment of clarity she asked, “I need to live in one of those nursing places, don’t I?”
To see my strong-willed mother so vulnerable and fragile just about killed my heart. Yet at the same time, my heart opened more fully than ever before.
On the way out of her door that last day at home, she stopped and hugged me long and hard. A hug so real and raw I burst into tears. She rested her head on my shoulder like a child, looked up at me and whispered, “I’m sorry, Darla. I’m sorry I did that to you.” (hitting me the days before)
I comforted her and said, “Mom, you did nothing wrong. I know you didn’t mean it. It’s okay.” I wiped away tears. “I love you.”
As I helped her into the car, she said her final goodbye to Julia outside on that bitter cold January day–all of us knowing this was the last time she’d see her beloved granddaughter.
We drove to Avita in silence, all of her belongings hastily packed in the back of the car: her favorite blanket, her slippers, her angel figurines, her Bible, her Tony Bennett CDs, her stuffed animals.
Our entire 50 year relationship boiled down to this moment. The moment I realized I loved my mom more than anything and she truly loved me. Forgiveness and the general mellowing of age allowed us to truly enjoy each other’s company the past few years. I discovered that not only was she my mom, but she was a best friend, someone that thought like I did and I could genuinely relate to. I didn’t think I could live without her in my life. I wasn’t ready yet for her to die!
You never are when it happens.
Due to the raging pandemic, I was forced to drop her off at the facility and leave her there as none of the residents had been vaccinated yet. She was to be quarantined for two weeks once she arrived.
A nurse in full PPE gear gingerly helped my mom out of the car.
“Darla? Aren’t you coming with me?” my mother pleaded with fear in her eyes.
“I’ll see you in a bit, Mom,” I lied, tears running down my face. “Don’t worry, they’ll take good care of you.” I watched her shuffle inside clutching her water cup filled with ice.
As I drove away, a song came on the radio as if sent straight from God to comfort me. The lyrics opened up the floodgates and all the years of bottled-up pain and fear and love gushed out in one beautiful torrent.
Redemption–Nathaniel Rateliff
In the hours that I’ve known
And of all of my woes
Are the cause to lay you low
I demand they turn to whole
Would you set me free?
Just set me free
As it takes its hold
And it won’t let you go
I’m reminded of the cold
And how it’s taken so much from me
Are you worthy of being saved?
All your fears and insecurities
Just set me free
Just set me free
Just set me free
And there’s nowhere to hide
And you’re only just trying
Are there only just lies you hear?
While redemption seems far away
While I stumble through every day
Just set me free
Just set me free
Just set me free
Just set me free
Just set me free
Keep running ’til we learn to find peace
Just set me free
Keep running ’til we learn to find peace
Just set me free
Keep running ’til we learn to find peace
Just set me free
Keep running ’til we learn to find peace
Just set me free
__________________________________________________________________________
My mom died from Alzheimer’s Disease on February 4, 2021, two weeks after her 87th birthday.
You can read her story from the beginning in Love You (Part 1)
Her story will be concluded in Love You (Part 3).
For information about Alzheimer’s Disease, visit Alzheimer’s Association https://www.alz.org/, Alzheimer’s Foundation of America https://alzfdn.org/
She's A Maineiac 
It’s not easy being a parent. Our children don’t come with instruction manuals and we have to wing it more times than we care to admit. What our parents taught us as we grow up doesn’t seem to be enough and what we learn on our comes with the bruises and scrapes of failure. Our mom passed away before the pandemic, but our step-mother got ill before the pandemic and lost her mobility because of the lock down. She’s the crankiest now because she had to move out of her home and a new town. Like you and your brothers, my brothers and I are trying to do all we can to make her last years as comfortable as possible. Your journey brings tears to my eyes and a new resolve to do better. Take care and peace.
Thanks for such kind words. My sincerest condolences about your mom.
I’m sure you and your brothers will be able to help your step-mother as much as you can. Truly, love will light the way through such a dark time. Change is difficult for anyone, but add age and an illness to the mix and it’s confusing and extremely difficult for the patient. This pandemic has made death and dying so much more complicated and hard on so many people. But it’s also taught lessons on what really matters in the end. Peace to you and your family.
Nothing sums up this lovely post of yours then this: “But born from this pain is the truth that love is the most powerful force in the universe.” I’m so sorry what you and your extended family had to endure together. I too had a mother who suffered from dementia. Though the details are always different, the enduring lessons we each take from each experience seem similar. Forgiving and loving helps to ease the pain. I look forward to Part III. – Marty
Thanks so much, Marty. Forgiveness and love saved our relationship for sure.
I’m sorry your mom also suffered from this disease. It can be brutal. Dementia can present itself in so many different ways. My mom actually kept her long-term memory up until her last breath. She knew who I was and who her grandkids were, thankfully. A nurse at the memory care facility said to me that because it’s a brain disease, the symptoms really depend on what section of the brain is dying.
Sending you so much love Darla. I am a former carer of my Mum. We also had a testy relationship. She suffered from depression for many years she was only 36 when it began. I had no idea what was going on but I felt it wasn’t ‘normal.’ At 11 I didn’t know how to deal with it. I found it hard to cope with how her depression affected me. We battled on, for a long time. Though our relationship was complicated I was very aware Mum was a good person. When she was diagnosed with cancer I didn’t know what to do but step in and care for her. Love is the most powerful force.
I am sorry for your loss and I hope through your writing you find the comfort you deserve. Those who serve, deserve. (I don’t always see this for myself but I believe it.) x
Thank you from the bottom of my heart. Your words are so comforting.
Your relationship with your mom sounds very similar to mine. She taught me that we all have failings and flaws, but the key is to look past those and love each other (and ourselves!) We all struggle and go through trauma in our lives in one way or another. Love is the answer to all of it.
Beyond beautiful. You can’t see it, but tears are rolling down my face – for you, for your mom, for all the pain, and for love. And for me and my mom, whose relationship was eerily familiar.
Thanks, Susan. We really do have similar relationships with our mothers! Growing up, I always thought I was the only one who felt this way. Now I just need to let go of this underlying feeling of guilt I still have over her death. I know I did all I possibly could, but I wish I could go back and do more (as futile as I know that is to think that way!)
Beautiful and poignant. Love to you Darla!
Aw, thanks so much, Tar.
This was lovely, painful, and touching. I lost my mother to Alzheimer’s shortly after her 87th birthday as well, but I can’t even imagine how much harder it all would have been if we’d had to go through it during the pandemic. Sending virtual hugs and blessings.
Thank you. So sorry you also know the pain of losing your mom to Alzheimer’s. Peace and blessing to you.
I was moved by your writing. Honest.
My wife is starting her alzheimers journey.
Lightly, still beautiful.
What is ahead?
What is ahead for her is the lightminded shortness
that makes our society incapable
of seeing or taking
the next step.
mRs
Thanks for reading about my mom’s story. It was something I just had to do, I had to get it all out to maybe start the process of healing from the trauma of it all. Sending you peace as you and your wife walk down this path together.
Here is today.
Deb wanted to make oatmeal for herself, not being helped by me. It was not as simple as it should have been. First, she had to find the oatmeal. She knew that it was under the kitchen counter on the lazy susan, but once that was open she had to distinguish between the various bags of flour, containers of sugar and cylindric boxes of oatmeal, but she didn’t want steel cut and worked to decide which box was the instant kind. Then she decided that the ingredients needed measuring, so she had to find the measuring cups and went through all the cupboards. One glass cup was needed for the microwave, but several other plastic measuring cups and spoons were needed for the oatmeal, water, raisins, nuts and sugar. In cases like this, it may be that Deb is so nervous about doing a task correctly that she over exaggerates how much control is necessary, leading to a much-over-complicated task.
Then she opened a book she had written. She sat in her chair, in her office where she wrote it, and she read it again and again. Then she wanted waffles, which she had for breakfast.
I made them.
My mom struggled with eating and toward the end, she couldn’t even remember how to eat or why she should eat. I had to keep reminding her but the disease gradually erased her memories of all of that.
Some memories outlast others. Mine of her will outast hers of me.
Oh my dear Darla, I cried when I read this. So beautifully written, and yet so painful. I cannot imagine watching someone you love go through that. What a an important message to take away from the sadness.
Thank you, Peg. I sure do miss you! I think of you often and send your family my love.
Love… it’s all we need.
https://www.bing.com/videos/search?view=detail&mid=4CACDD7A79C798FB10064CACDD7A79C798FB1006&q=beatles all we need is love &shtp=GetUrl&shid=48aeb7d7-815f-4893-9cc7-783ad431c3a2&shtk=VGhlIEJlYXRsZXMgLSBBbGwgWW91IE5lZWQgSXMgTG92ZSAoT2ZmaWNpYWwgTXVzaWMgVmlkZW8p&shdk=UHJlc2VudGFjacOzbiBkZSBUaGUgQmVhdGxlcyBlbiBsYSB0cmFuc21pc2nDs24gIk91ciB3b3JsZCIgcmVwcmVzZW50YW5kbyBhIEluZ2xhdGVycmE%3D&shhk=JfSKe0TaCxfcw%2FlMnkbxTREzjVjTdUfb14%2FFOeZrJqM%3D&form=VDSHOT&shth=OVP.jOAmr-xBpwyQ5H6rdhvyYAIIGG
beautiful,
MJ
It truly is! thanks for reading, MJ
I’ve been looking forward to, and fearing, reading this post for days. I knew it would contain everything that makes you someone I love dearly, someone who’s raw, honest, open, beautiful, insightful, and selfless. Thanks for sharing your mom with us and letting us see how she lives on in you.
And thank YOU for being a friend to me during these ridiculously insane times! Love you, Big Sis!
When I saw a link about your blog and your Facebook page, I went to them as I saw you were from Maine, my favorite place in the US. When I saw the link about your Mom (Part 2) I sort of knew how it would read as my Mom & Dad both had dementia. Both of them slowed in eating, but Mom’s case was worse. I had been through this before in caring for my mother-in-law who also had dementia as well as cancer. My younger sister was our Mom’s caregiver and grew impatient and nasty when Mom wouldn’t eat. Add to that that my sister is a former competitive bodybuilder and self ascribed health nut who thinks she is better than the rest of us mere mortals. Whenever I visited, I used kindness and love. I looked at the situation this way – I knew she probably didn’t have too much more time to live, so letting her enjoy what she wanted was important. I let my Mom eat whatever she wanted, usually carbs like waffles & corn bead. At least she ate. Like your Mom, mine also became combative, especially when my sister could not longer meet the challenges of taking care of her and we had to put her in assisted living. Sometimes my Mom would have these totally aware moments where she knew where she was but asked me to get her out. The COVID came and we were locked out unable to see her. I tried FaceTime but my Mom was not tech saavy. The first time it scared her & she became agitated & started screaming. Other times she was losing her speech and could only grunt. Six months we could not see her. In the final month of her life she had a fall and spent most of it in a hospital, angry at my sister. Only one of us could see her and my sister claimed that right. I got a call one day that Hospice said she was dying and to come. On my birthday, my husband drove me 2 hours so I could suit up in full PPE to visit her for 1 hour, the last time I would ever see her. I played hymns on my iPhone sealed in a ziploc bag and called my baby sister in Georgia who had COVID and would not get the chance to visit. It was worth it as when my Mom her her youngest child’s voice her eyes opened wide. Even though she could not speak, her eyes spoke volumes. Four days later she passed away on Sept. 2, 2020. My father lived in Wyoming and also had to go into a memory unit as he got combative with the caregivers who came to his home. I called a much as I could but the facility was slow to respond to my requests. He wouldn’t get the vaccine as he though they were trying to harm him and would get violent. He died from COVID on Oct. 1, 2021. Sorry this is so long. Thanks for listening. There are way too many of us out there that have gone through this denied being with our loved ones at the end.
Thank you so much for sharing your stories. I am sorry you know the pain of dementia. This comment of yours really resonated with me: “Whenever I visited, I used kindness and love. I looked at the situation this way – I knew she probably didn’t have too much more time to live, so letting her enjoy what she wanted was important.” <–YES!!
Love is truly a healing and powerful force–the most powerful force in the universe.
When you mentioned your mom's eyes opened wide, I had a similar experience with my mom's last day. On the day of her death, I was the last one of my siblings to visit her in hospice (covid only allowed us one hour per day to see her so we had to rotate visits).
I was dressed in a full hazmat suit and held her hand and rubbed her shoulders for almost three hours. The nurses allowed me to stay with her as she was taking her very last breaths, clearly stopping breathing several times for several minutes, enough so I thought she had died, only for her to suddenly breathe again!
Finally, I had to leave her– which was an agonizing feeling. I pulled my mask down and kissed her on her forehead. At this point her body was curled up and unresponsive, death was whispering in her ear. The nurses told me she was basically unconscious.
Yet–after I kissed her, she let out the loudest and most peaceful sigh. She knew I was there!!! Of course she did!! Priceless moment! I didn't get the chance to say goodbye when my dad died decades ago so I was blessed to have that time with her on her last day.