My mom is dying of Alzheimer’s

She was diagnosed six years ago, at the age of 62. It started with having problems filling out her charting at the rehab center where she worked as an occupational therapist. Her boss asked my stepdad if something was wrong with her, and the diagnostic process began. I attended the appointment with the cognitive psychologist. He led her through a battery of tests, including one where he asked her to do things like, “Touch your right hand to your left elbow.” By this time, she was already unable to follow the command. I went numb as the nice psychologist reported that she had “probable Alzheimer’s,” and then suggested that we get busy with Power of Attorney, advanced directives, and so on.

She went quite downhill quickly after the diagnosis. Something happened with her balance, and she started falling at times (later, we found out that the falls were linked to low blood pressure, and they disappeared with licorice). She drew inward, and more frail. Then, she stabilized.

I was scared as hell. It is hard to describe the feeling of impending loss of a parent. Can anyone help me here? It was as if my security, my solid base was ripped out from beneath me, leaving a big, gaping hole of nothingness…the void. I spent time with her that spring, recording an oral history. She was forgetting some things, but could still remember a lot. She drove for a few more years, until she was refused a renewal due to her diagnosis.

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Here she is in the earlier days, with her ever adoring husband.

You will see that in every picture I post, my stepdad Charles is by her side. He has been an amazingly devoted caregiver, an angel in the form of a man. They married in 1994, and had 12 happy years together before my mom’s diagnosis. Day by day, he has survived and taken into stride each gradual loss.

It hurts me to know that my son will not remember his grandma. He loves her now, and isn’t even fazed by the fact that she often scolds him. It’s funny, but the only coherent things I have heard her say anytime lately are things like, “No, little guy, let’s not do that,” and, “Let’s be quiet little guy.”

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This was 2.5 years ago. My mom appreciating her grandson.

My mom and stepdad came to my house hours after the birth of my son. We had champagne and cake to celebrate. This was three years into my mom’s Alzheimer’s. She was glowing and exuberant about meeting her grandson, and she sat next to me on the bed, stroking his cheek while he breastfed. At one point, she turned to me and asked, “Who’s this little guy?”

Over those next few months, we did a lot of hiking with my mom and stepdad. We would put Gavin in the carrier, and take long walks through the hills outside of the city. Really good times. Superb memories. Eventually, my mom stopped being comfortable climbing steep hills. She started to lean over as if to crawl. Then, any kind of ground that was not completely smooth and level became too much, so hikes were out, but we still took nice walks around the neighborhood. The walks became shorter and shorter. As of this week, my mom can no longer walk.

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Hikes in the hills and trees

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We had fun.

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 In the last year, the disease has progressed to advances stages. She is completely dependent on diapers now, and her leg muscles have atrophied. She can still talk, but very rarely makes any sense at all, and her words are starting to slur at times. A couple of weeks ago, she came down with a stomach flu, and grew weaker. Though the stomach flu resolved itself, the weakness did not. Charles ordered a wheelchair this week, and they are now getting visits from home nurses, health aids, and a social worker.

My mom stopped eating solid foods a few days ago, and is not drinking a whole lot either. Charles insists that she is giving up, and I believe him. She has been talking for a long time about not wanting to live anymore. She is skin and bones. A week ago, she was walking, though somewhat off balance. Three days ago, she was sitting on the edge of her bed, trying with all of her might to stand up. Her legs eventually gave out, and her body slid from the bed to the floor. Today, she is not even sitting up, and spends the day drifting in and out of consciousness.

Her eyes are usually glazed over and dull, except for those moments when she visits this world, and gifts me with a smile and loving gaze. Her cheeks are sunken in and her jowls hang limply. Moods pass over her face like weather in the tropics. For a moment, she smiles. A moment later, she tears up with a look of devastation. Then she gets agitated and defensive (although that is coming less and less with a weakening of her strength). It is only a matter of time now.

I feel incredibly grateful that my family is in agreement not to prolong her life by artificial means (feeding machines, antibiotics, etc.). We are staring down the bullet hole of her death, and are supporting one another. I am hopeful and terrified about my mom dying. Hopeful, because it will mean an end to her suffering, and an end to the immense burden on my stepdad (though he consistently claims to undertake it joyfully). Terrified, because it means I will no longer see her smiling face, hear her voice, or see the light in her eyes. I know the grief will overwhelm me when the reality of her being physically gone hits me. I think I will miss her voice most of all.

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This is how I will remember my mom, laughing.

I think losing a parent is like any major rite of passage into the unknown. Before it happens, you cannot even imagine it. You don’t even let your mind go there out of fear. Over time though, you get more and more used to the idea. Like labor, it builds up, until you get closer and closer to the edge of that cliff. It is so painful, but not more than you can bear, and the progression feels natural, like there is no other way. It is all as it should be. Just surrender, and trust. I felt this way when my son was coming into the world. Now, I feel this way as my mom is exiting. Hopefully, I will feel a similar peace when it is my turn to cross to the other side, as well.

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14 thoughts on “My mom is dying of Alzheimer’s

  1. Thank you for sharing this. Even though I know this is incredibly painful, it just sounds like there are so many “right” things going on. Your family is blessed to have each other right now as you all work together. I am working on the courage to share my story as my mom passed earlier this year and it was a sub-optimal experience. I am sending positive thoughts of peace.

    • You are right. We are still so blessed in so many ways. I have seen a lot of families turn to anger instead of compassion in times of loss. I can understand why (anger can be easier to feel than grief), but it does feel so good that there is a lot of compassion happening in my family. Thank you for your peaceful thoughts. I am sorry to hear about your mom, and that your experience was challenging. I do hope that you share it soon, though!

      • Thank you for sharing. You are fortunate that your family are all united not to prolong your mom’s agony . My mom is 94 and at the same stage as your mom but my sister just cannot handle the thought of death and is angry at me.

      • Diane,
        Yes, I know it! In my work as a therapist and in life, I’ve seen this pattern happen a lot. People turn to anger in times of grief. I have done it myself at times. I think it is just an easier emotion for people to handle at times. When you’re angry, you don’t feel so powerless, right? My prayers go out to your family, that your sister can find the acceptance she needs, and you can join together in compassion to face this hardship.

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  3. I am crying now as I write this… and I am sending a bigass load of empathy and love to you right now. I know it has been a month since you’ve written it, but I am wishing and praying for your mother to be in as little pain as possible as she makes her journey toward the other side.

    “It is so painful, but not more than you can bear, and the progression feels natural, like there is no other way. It is all as it should be.” …Thank you for writing this. I am putting it my journal because I want to remember it. We all have to go through this as some point, and you make it seem less scary to me. The thought of losing my mother some day (she’s 70) scares the absolute bejesus out of me. Thank you for sharing your personal story. It helps. I feel like I’m with you. Sending you and your beautiful mom with a lovely smile lots of strength and love. ❤

    • Thank you so much Chantal for the online empathy. I feel it and appreciate it so much! My mom is still here, and has somewhat stabilized, but what a wake-up call her illness was. I used to feel like you about losing my mom, and have come to terms with it more now, but when faced with the reality in December, I felt completely crazy, like crawling out of my skin.
      And so the wheel turns. Thank you again for your kindness!

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  5. You are very strong, and through this experience you are learning much about the world, yourself and your family. Thank you for sharing this.

    When my Uncle passed last year, I spoke at his funeral, saying that while his physical body maybe be gone, he lives forever in myself, and everyone who met him through stories and his actions.

    I’m going to share this with my family, as it touched me quite a bit. My grandmother was diagnosed 4-5 years ago. My mother and father are taking care of her, and have been for said amount of time as well. But, they still get frustrated with her sometimes. I try to understand why, I mean, I get it, but it seems futile to me.

    • Thank you, Brycical. I am glad to hear that my words have touched you. It is true, I am learning so much. The biggest lessons are the hardest, aren’t they? I am sorry to hear about your grandmother. It is such a difficult disease, and I think that if I were caretaking my mom on a regular basis like my stepdad is, I would also get frustrated sometimes. His patience with her has taught me a great deal about the power of love. It is love defined, truly!

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