Learning to live: Loving and grieving through a mother’s journey with Alzheimer’s disease

·4 min read

It has been said that grief is love. If so, I have been loving and grieving for a long time — eight years of love, grief and loss. My mother died on Jan. 2 after a long battle with Alzheimer’s disease. She was diagnosed in the fall of 2014 but there had been signs for a few years prior. Signs that were easy to ignore but looking back, were obvious.

It was a long journey of loss. A grieving process that was complicated, lonely and very personal. I watched her slowly fade away. I would sit across from her ... she wasn’t someone I knew, she wasn’t the mother I knew. The sparkle began to fade from her eyes, the joy from her existence. I was slowly losing her day by day. The memories, the love, the what ifs. The caring, the concern, the impatience, the guilt. The loss. Oh, the loss! I lost her over and over. Her existence becoming smaller and smaller. The loss of her independence when she needed in-home care, a small room in personal care and then a semi-private room in a nursing home. The loss of mobility after she broke her hip and was never able to learn to walk again. The loss of all short and long-term memory. The loss of her no longer seeming to know me. That is what I clung to the most, the moments when I thought she knew me and the moments I think I pretended she knew me. She stopped calling me by my name, she stopped talking about her grandchildren, and she stopped saying “I love you...”

Alzheimer’s couldn’t take away everything. We definitely had happy moments. I try to only remember those moments. Our talks, our walks, taking her small treats, looking at photos, reading to her, holding her hand, cuddling with her, laughing with her — memories I will never forget and hold close to my heart. All of my life my mother was my biggest cheerleader and loved me unconditionally. I was her only child. I became her advocate and loved her unconditionally. My goal was to make her smile, feel loved and not alone. Hospice certainly helped with that as well. Everyone who knew her loved her, even on her darkest days. I became the “parent” and that role reversal was difficult at times while trying to preserve her dignity. I had to make certain decisions that she didn’t like but she would eventually forget she was angry with some of those hard decisions.

COVID took a lot away from us. Visiting came to an abrupt halt. I was not allowed to visit her in the nursing home for months; I was very angry during those months. I knew Facetime would be confusing for her, but eventually I did. By that time she was no longer verbally responding but I could occasionally get her to smile and I think she recognized me.

By the time I could visit her outdoors with Plexiglas between us, she had to have staff with her to hold the phone while I spoke to her on speaker and I don’t think she recognized me then. When I could visit in person as a compassionate caregiver our visits were quiet and intimate, spending time alone and trying to cherish every moment. I would take her mocha drinks, which she loved, and a bracelet she always wore that said “you are not alone.” I needed her to know that even though I couldn’t always be there, I was with her in spirit. A mother/daughter bond can never be broken, despite everything.

Toward the end of her life mom was bed-ridden and had a lot of medical issues happen all at once. The last two weeks were painful for her and so difficult to watch but the hospice team spent a lot of time with her trying to make her as comfortable as possible. I said goodbye to her for the final time a few hours before she passed.

My heart hurts. It has hurt over and over for years and I don’t think it will ever stop hurting. She is gone. My mother. The first person who knew me and the only person I knew all my life — gone. I miss her, I love her. She will never be completely gone as long as I hold her memory in my heart. She has moved on and is hopefully in a place where she is free, free from the ravages of that horrible disease, free to walk, free of pain, free. Grief is love.

Kimberly McGinnis is the director of resident services at The Village at Penn State. This column is coordinated by www.ltlwys.org whose mission is to create educational and conversational opportunities for meaningful intergenerational exchanges on loss, grief, growth and transformation.