Today was one of those days where any strength and conviction I thought I had went right out the window.  My daughter and I spent a few blissful days in Chicago for Thanksgiving, and I knew returning to reality would be no picnic. However, I wasn’t at all prepared for this humdinger of a homecoming.

Desperation Personified

To be honest, I’m not sure what tomorrow holds. Have you ever felt like you didn’t want to go to sleep for the sole reason that you didn’t want to have to wake up? That’s where I am right now. At one point today, I stepped outside to take a phone call and found myself walking aimlessly, tears streaming down my face. Somehow the freezing cold air was comforting; I could have kept right on going, walking for hours. Getting lost for the next several years sounded like a pretty attractive option.

I’ll be on the phone first thing tomorrow morning trying to formulate some sort of plan – again. The meds are not working, and today I felt a level of desperation that I haven’t experienced in awhile. Complete and utter helplessness and hopelessness. As I sat and tried to console my inconsolable mother, I felt like a mouse in a complex, convoluted, never ending maze. No matter which way I turned in my mind, I hit a dead end.

Memory Loss: Just the Tip of the Iceberg

If I don’t do another worthwhile thing, I’m determined that educating the world about Alzheimer’s and dementia will be my life’s mission. The perception that these horrific diseases are primarily about memory loss has got to be replaced by an understanding of the absolute torture they force upon their victims. Alzheimer’s is not forgetfulness or senility, and it is most certainly not a normal part of aging. This debilitating disease is cruel beyond words, and watching my mother suffer as it ravages her mind and body is brutal. I’ve never felt so helpless.

“Help me”

Today, as I listened to her tormented screams and watched as she hit and pinched herself, I was completely powerless. It continued for hours on end until she was absolutely exhausted. So worn out that she was barely able to sit up, yet she couldn’t settle down. I don’t even know how it’s physically possible to be quite honest. And then, during a moment of clarity, she uttered two of the most heartbreaking words I’ve ever heard. “Help me.”

I can hold her hand, stroke her head, and tell her over and over again that I love her, but it’s not enough. If I’m lucky, I can provide a moment of comfort here or there, but her suffering continues. The look of anguish on her face is enough to make anyone cry an ocean of tears. This disease is wretched and unfair. What is its purpose? Why must it exist?

First Step: Understanding

I suppose I’ll likely spend the rest of my days searching for answers to the questions that weigh on my mind. But in the meantime, I can only hope that sharing our experience will help others to understand the havoc this disease wreaks on its innocent victims. Simply put, not finding a cure is just not an option. No one should have to suffer this way…no one.


  1. Elaine Mansfield

    Your message is heartbreaking. It was a relief when my mom went from a fear so overpowering that she bit and screamed at her caretakers to a settled peaceful place where she knew nothing or nobody and slept in a fetal position. But in those last years, along with her fear, my mother the person was gone. I hold you and your mom in my heart.

    • Adeliane

      My mom was a very strong woman, hard woinrkg individual and dedicated grandma with her grandchildren. At first it was hard to see my mom mental health deteriorate and slowly fade away. I’m a daughter of 5 siblings and my frustration has been that all other siblings have opted to leave me all the weight on taking care of my mom. My mom has been in a Nursing home now for the last 5 years and just to keep on top of this facility to do their task has been a full time job for me; Mom has had great caregivers and some that really should find something else to do as caregiving is not their call. I visit my mom every day after work to check up on her on several occasions I have found my mom extremely wet w/urine. What should I do or can I do anything, other than to be upset at the caregiver that has my mom on that given day?Thank you by the way for your website, it’s extremely helpfull for me to read everyone elses comments. I will learn to face this challenge to be a good daugher and a caregiver for my mom.Martha

      • Ann Napoletan

        Martha, it sounds like you are a wonderful daughter and caregiver for your mother. You are right in that even when our loved ones are in a facility, we have our work cut out for us in staying on top of every single little thing. When we moved my mom to assisted living in 2008, I was under the crazy assumption that if you paid a lot of money, great care was a given. Boy, was I wrong. Had to learn that one the hard way.

        I really believe in the old adage, the squeaky wheel gets the grease. When we ran into issues, I organized a family group in hopes that together we would have a greater voice than each of us alone would have. To a degree, it was successful. Before it was said and done, we had district management in the building making staffing changes at all levels. Unfortunately, they didn’t do enough, and ultimately I had no choice but to move my mother elsewhere.

        The other thing is, do not be afraid to file a complaint with your health department and/or contact your local long term care ombudsman. A complaint I filed yielded four or more violations from the Ohio Dept of Health. It doesn’t necessarily fix everything, but it certainly gets issues documented. I also got the ombudsman involved and she conducted an investigation.

        It’s sad, but you just can’t let up on these places.

        May God Bless you and your mom. Stay strong and make sure you are finding some time for yourself.


  2. Ann

    So sad, Elaine. I understand exactly what you’re saying. Peace is the most we can pray for at this point, I think. Last night, we were bringing mom from the bathroom back to her chair, and she actually said, “I’m scared.” Thank you for your continued support and encouragement. It helps to know that others have been through this and have survived.

  3. Sofi

    The hardest part for my 85 year old fatehr was to allow his daughters to do personal’ personal care. After over a year as his primary caregiver, it is routine now. Not having children of my own, it is unique to me to be caring for another person. It is both rewarding and exasperating at times. The hardest part for me is his dementia. There are times he won’t trust me. He wants to go home and won’t believe that we are already at home. He rarely goes anywhere, but has very vivid dreams and sometimes it takes him awhile to make his way back to reality. It is also stressful because I am Deaf and he does not know sign language. It is very difficult to speech read when someone is saying something off-the-wall’ or way out in left field. I have taken off running around the block a few times to keep from crying or losing patience with him. It is all worth it though. I love him and thank the Lord every day that he is still with us. Now if I can only help him understand why we won’t let him drive!

    • Ann Napoletan

      Oh Sofi! What a task. Communicating with someone suffering from dementia is difficult for anyone; I can’t imagine what a challenge you must face on a daily basis. May God Bless you. It’s so hard to have patience when you just can’t reason with them, isn’t it? “Exasperating” is an understatement.

      Be sure that you are taking some time out for yourself as much as possible. Taking care of YOU is an important factor in your ability to take care of your father.

      Sending prayers to you and your family.


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