A Family Caregiver’s Only Alternative With Alzheimer’s Disease

Ray Burow avatar

by Ray Burow |

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Do you ever awaken in the wee hours of the morning and wish everything was back to normal? Do you covet the old days, before Alzheimer’s disease and caregiving?

I suppose it’s natural. Who wouldn’t undo what’s been done? Who wouldn’t reverse the diagnosis that changed your loved one’s life, along with yours, forever? It sounds dire, and in a sense, it is, but there’s no going back, only forward.

The only alternative

Moving forward is better than the alternative. A shell of the person you once knew is better than no shell at all.

I remember struggling with my mother’s new normal. She was and wasn’t the same person. Even with Alzheimer’s disease, she remained a lovely mother and grandmother, which I recognize as a blessing. But at the same time, she was different. I mourned the subtractions, the leveling of depth. Love remained, but the depth of our conversations diminished, and the intimacy with which she could pour into our lives waned.

Looking back, I suppose my emotions were rooted in selfishness. Of course, I wanted her to be well for her sake, but I also just wanted her. I wanted my mom, the old one who was there for me no matter what. The long talks and the advice she provided were invaluable to me, and I wanted that. She looked the same and still had her sweet motherly instincts, but our capacity to fully engage with each other lost ground.

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Sometimes things seemed normal and right, and in those moments, I was lured into feeling like nothing had changed. But those minutes and seconds always ended abruptly, leaving me sad.

I was constantly on a roller coaster of learning to embrace change while also mourning our loss. Here I was, a grown woman, and I just wanted my mom — the whole package, and all that came with it. I wanted the grandmother who could still drive and make cookies, was faithfully honest with me, and provided a perspective on life that I couldn’t receive from anyone else.

When only a shell remains

Thankfully, I married well, and my husband, who’d lost his dad before my mom’s diagnosis, gave me a precious nugget of truth that helped. He reminded me that though my mother was a shell of the person she once was, she was still here for us to love, and he’d give anything if he still had just a shell of his father to love in person.

I’m not sure if it was then that I began to embrace the new normal, but I did begin the process at some point. The pain accompanying loss didn’t totally dissipate, but embracing the good days and praying through the bad ones was helpful. Actually, we prayed through the good and bad days.

With Alzheimer’s disease, even good days are challenging. But looking ahead positively is better than the alternative, which will eventually arrive.

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Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.

Comments

Pamela McKenzie avatar

Pamela McKenzie

My beloved husband of 52 years and I are just beginning to travel this uncharted and unknown path. It is early days, and mostly memory loss is affecting him. Living each day is giving me a glimpse of the future, but I remain committed to joyful days whenever possible, and helping hands when I need them. I am also sure that I need to take care of myself so that I can be his bulwark, for as long and as much as I can, His meds may be keeping him progressing at a slower pace down the Alz path; and all the research is buoying my hope.
Blessings to each and every one of us learning things we hoped would never be...
Pam

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Carole Gawronski avatar

Carole Gawronski

While I'm glad the author found a way to deal with her pain, I disagree with her conclusion that every day with the shell of her mother is better than the alternative of her passing. My mother has been moving through Alzheimer's for over 14 years. We lost the person she was a long time ago. Getting this disease was the thing my mother feared most. I'm absolutely sure if given the choice she would choose to end this life. And I, loving my mother, would also rejoice if this blessing was given. The confusion and emotional pain she suffers on mostly a daily basis is not the life she or I want her to have. I'll take the alternative the author would not select.

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kathy lockhart avatar

kathy lockhart

I felt the same way caring for both parents ending up with Alzheimer’s and Lewy body dementia. I miss them everyday

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Ray Burow avatar

Ray Burow

Kathy,

I am very sorry for your loss. I understand what you mean by "I miss them every day." I feel the same

Thank you for commenting. Please drop by again. I am sure there's a lot we can learn from your experience.

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