The Angst of Alzheimer’s

“In Alzheimer’s, the mind dies first: Names, dates, places – the interior scrapbook of an entire life – fade into mists of nonrecognition.” -Matt Clark

Did you ever wish you could erase an entire day from your memory? Maybe you’d like to forget the Monday that started with a flat tire and ended with a pink slip. I’m sure there are moments we’d all like to disremember. Imagine what life would be like if forgetting – the good and bad – was your normal state of mind.

Facts & Figures

June is Alzheimer’s and Brain Awareness month. My mom was one of the 5.4 million Americans living with the most common type of dementia. According to Facts and Figures, an annual report released by the Alzheimer’s Association:

“Dementia is an umbrella term describing a variety of diseases and conditions that develop when nerve cells in the brain die or no longer function normally. The death or malfunction of these nerve cells, called neurons, causes changes in one’s memory, behavior and ability to think clearly. In Alzheimer’s disease, these brain changes eventually impair an individual’s ability to carry out such basic bodily functions as walking and swallowing. Alzheimer’s disease is ultimately fatal.”

Signs of Alzheimer’s

I began to notice something was wrong with my mother back in 2001. For the next seven years, I did everything possible to convince many, if not all, of my ten older siblings what I knew in my heart to be true: Mom had Alzheimer’s disease. I insisted Mom go to the doctor after she took a hot pan out of the oven with bare hands. When I presented Mom’s doctor with a list of strange occurrences – most notably the oven incident (which she didn’t even remember), he denied my request to refer her to a neurologist. Although an early diagnosis is beneficial, it’s often the doctor who fails to listen to frightened family members.

Miracle Medications?

Most patients who receive an Alzheimer’s diagnosis tend to be in the moderate or severe stages of the disease and are less likely to respond significantly to the medications approved by the U.S. Food and Drug Administration. These drugs may help maintain thinking, memory, and speaking skills, and help with certain behavioral problems. However, they don’t change the underlying disease process, are effective for some but not all people, and may help only for a limited time. There is no cure.

Alzheimer’s: A Devastating Diagnosis

Dealing with this devastating diagnosis takes an immeasurable toll. Caring for a loved one with Alzheimer’s disease can have high emotional, physical, and financial costs. The demands of day-to-day care, changing family roles and difficult decisions about placement weigh on your heart. On average, Alzheimer’s and dementia caregivers provide care one to four years more than caregivers caring for someone with an illness other than Alzheimer’s disease. They are also more likely to provide care for five years or longer.

Being a caregiver is hard. It can be even more challenging if you have cerebral palsy or any other disability. Honestly, not everyone is equipped for the job. It never seems to get any easier, especially with discord among family members. Plus, the stupid things people say make things worse. Surprisingly, my relationship with Mom got easier along our journey. And that is where the angst of Alzheimer’s turns into a thing of beauty. Unfortunately, we tragically lost Mom when a Florida nursing home killed her. After five days in an unresponsive state, she died on January 30, 2017 — just one day before her 88th birthday.

My mom helped people her entire life.  As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and, her memory — alive.

Alzheimer's Caregiving Experience: Angst, Loss, Love

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  • I read that Dementia begins when a person is in his or her twenties or thirties. It is just that the symptoms are so slight they go unnoticed till the person reaches his sixties. It is sad the physician did not do his job.

    • I have also read that a person has the disease years before symptoms start to show. In my Mom’s case, there were two physicians who didn’t do their job. Unfortunately, I’m sure that’s more common than not.

  • I use to be a caregiver for my Mom, who I lost to cancer in 2009. I often wonder what is worse, to lose the woman who raised me to a mental disease or to a deadly disease like cancer. There are no easy answers, caregiving is one of the toughest battles I faced in my life. I also understand having some family discord doesn’t make the road easy to travel either. I had to do my caregiving long distance, living and working in another state, my Mom being stubborn and not wanting to move in with me, still looking at me as the child. My sisters and I got through, I racked up a lot of frequent flyer miles getting home just to take Mom to chemo appointment. Moving her into assistant living was a nightmare-she fought so hard for her independence and to conquer her disease.

    In the end, I look at the small victories I made with my Mom. I know in my heart of hearts, she is happy, whole and healthy with a head full of hair. She raised us girls right and we now “mother” each other. I keep her memory alive and full in my heart and this I share with other caregivers-take care of you. Its hard, but you are no good to anyone if you are totally run down. Schedule your “me”time, share the responsibilities, try to get everyone on the same page. My sisters and I had weekly family meetings by phone and email. One or two persons couldn’t do it alone. Try and have some balance in your life. It will make things just a bit easier. Take care of you.

    • Dear Kelly,

      I am sorry you lost your mom to cancer. Thanks for the reminder that we caregivers have to take care of ourselves. I’ve started exercising again because it’s good for me and makes me feel better. I’m grateful that I am not doing everything alone. My family is currently on a rotation schedule (most live in other states); although that comes with challenges, it’s the best solution right now. Unfortunately, having to deal with family members who continue to cause problems makes everything harder than it has to be.

  • I am glad I read this today, it’s as if you took a page from our Alzheimer’s book. It’s amazing in a sense how many of us experience the same pattern, a sense something is off, seeking the help of a chain of medical professionals, which doesn’t provide what we need, maybe because they don’t understand or have the answers then finally diagnosis, which doesn’t change anything, and then so many hard decisions. The most difficult to me to continue caring at home, or placement. Neither is simple. After caring for mom at home for 7 years, we placed our Mom in a facility, something I thought we would never do or have to do. I smiled when I read “What has gotten easier is my relationship with Mom. And that is where the angst of Alzheimer’s turns into a thing of beauty.” from your article, I have 2 sisters and 2 brothers, until Alz becae part of our lives, my mom and I were usually at odds, since I became very involved in her life trying to help her and care for her we have become closer than I imagined possible. That is a “thing of beauty” that I am so grateful for and so proud of. Thanks for sharing your story, it’s helpful.

    • Dear Karen,

      Thank you for reading my story. It was a challenge for me to write because, as you know, there is so much more that could be said. There are so many hard decisions that become even harder when no one wants to make them. I know you never thought you’d place your mom in a home; remember that in doing so, you did the best thing for her. She’s now in a place where is safe and taken care of by trained professionals. We can only do so much. I’m glad my story helped and that you are closer to your mom. Feel free to add me as a friend on Facebook.

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  • Nicki – beautiful/succinct article. I know you will continue as I to be an advocate for those with and those caring for loved ones with Alzheimers.