Damn Dementia

I’ve been thinking a lot about my Mom. It’s been about six years since she was diagnosed with Alzheimer’s Disease. Mom had been ignoring our words and repeating the same questions over and over and over. Thankfully, my sister put the pieces together and convinced her to see a neurologist.

So much has changed in those six years. I’ve seen my beautiful, bright Mom go from knowing the quickest route to any place to being unable to find her bedroom in her home of nineteen years. From cooking the world’s best carrot souffle and brownies to not being able to comprehend a simple recipe. It’s been a painful journey for all of us.

For me, the worst moment came about three years ago. I was visiting my folks, working remotely, using her office as my base. I slid out the keyboard shelf on her desk and saw it. A handwritten note to herself:

My children are Lauren and Andrea

My grandchildren are Ben, Hilary and Jamie

I remember tears falling down my cheeks. I wondered how it must have felt for her, knowing she needed reminders of such ingrained information. The next time she asked the same question over and over, I tried to keep that note in the back of my mind, so that I wouldn’t get irritated in my responses.

This summer, due to a convergence of things horrible, we made the decision to place my Mom in a Memory Care unit. We were fortunate, my folks have long term insurance which made it less of a financial burden, but it was still an emotional clusterf*ck. No matter how good the reasons are and the place is, institutionalizing someone you love is brutal.

It’s been difficult. I miss my Mom, even though she’s pretty much been gone for six years. When she lived at home, I spoke to her daily; I tried to make her laugh and answered her repeated questions about the weather. Now, our daily connection has been severed. Each trip down, I wonder if she’ll know who I am without her little note and without that daily reminder.  

There are times when I think about the woman my mother was before she took ill. She was, and remains creative. She was a leader in many spheres. She could meet someone in a supermarket line and become friends with them. She has a memory that allowed her to remember faces and places better than most. She was also highly critical and quick to tell me to brush my hair. She still does that. She also kept a lot of secrets, especially about the time before she met Dad.

The disease has taken most of that from her. She’s still eager to prove herself and is active in all the programs the home provides. Sometimes, I watch from a corner where she can’t see me, trying to telepathically communicate the answer to a question about the sound a sheep makes. When she guesses wrong, a little part of me dies inside.

I wish things had played out differently for her. No one deserves to be left a brittle shell, empty of all those things that made them human. I remind myself she’s happy where she is – surrounded by people like her, having the same conversations over and over again. But I wish it were different. I wish she’d told me all those stories. Shared her childhood with me so that I could better understand the woman she was. That’s all lost now. I’d give a lot to see the sparkle back in her eyes instead of the dull thud of dementia.

My Mom’s disease has changed me. I hope it’s taught me to be more empathetic and patient, but I’m not always sure that’s the case. I know it’s renewed my belief in the power of stories, of sharing and recording their stories before it’s too late. In their stories, we learn who we are and where we come from.

Mom, Ninety Fifty Something

We are one of the lucky families. She’s in a good place, with great caregivers. Dad, my sister and I are able to breath again and live our lives without the stress of caring for her disease. We’re still involved in her life and visit regularly. Every day, the home sends me an email with a list of the activities she participated in, so I know she’s keeping busy.

Just about every day, I encounter someone else who loves someone afflicted with this disease. I try to stop and listen to their story, hoping I can help them in some way. I know how difficult it is. There are no easy answers, just a deep sadness. The best advice I can give anyone is to take care of themselves. This disease takes its toll on the caregivers as well as the patient.

If you need help, reach out to these agencies, they may be able to make a difference for you.

Alzheimer’s Association: they have a 24/7 hotline that can direct you to caregivers and other resources

Women’s Alzheimer’s Network:   A group with caregiver resources as well as an active advocacy group

National Institute for Aging:  links to clinical tests that may be available for your loved one

Ciao for now,

Lauren J

10 Comments

  1. Thank you Lauren . My mom lost her ability to speak , but thankfully knew who we were . It the agony of watching her decline and cry because she couldn’t communicate her needs still haunts me to this day . When I can’t recall a word or finish a thought verbally I almost cry too ? And then my daughter tells me it happens to her too . Then I remember the exact same conversation with my mom . I’ve missed your writing . God bless you, god bless your momma and god bless all of us .

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  2. Lauren, Your beautiful words tell a very sad story. But in a way, you are continuing your mom’s legacy by sharing your relationship with her. As you, I and the other Jr. Debs, have known each other for at least 70 years. The photo you posted, in itself, is a story about how your mom and the rest of us grew up in S. Providence, R.I. The three-family house with laundry on a rope between different windows, the fourth floor attic that sometimes was used as a gathering place, the factories with smokestacks that are emblematic of our somewhat gritty neighborhoods, and the scruffy hedge that seems to be struggling to survive. In the middle of this picture is a young women in a sweater with a detachable white collar – so typical of what we all looked like in that era. Your mom doesn’t remember all of this but we Debs do and carry shared childhood memories of which your mom is a part. Marian

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  3. Remember the love.
    Even if she forgets you,remember to visit often. You are not the one with the illness. Write down stories you remember now before they are gone. I use to work in a nursing home. You could tell when someone was being admitted-their family looked sad. Whats tragic is family only visiting on major holidays. They still feel lonliness

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