It's so true. I've read how people would say that when a person has dementia, they are gone mentally. That they're not aware of who you are, etc... In the 23 years of helping dad with dementia mom, bedridden for over 13 years and completely vegetative state about half those bedridden years (guestimate) - my family would tell me and dad that mom was no longer there. We refused to believe them.
I know, because when dad and I are arguing, and when he would hit me in the head while I was changing her pamper, I could see her trying to twitch. Just as when we were growing up, mom protected us girls from our dad's anger. I swear several times this happened, I sensed she was trying to move to protect me.
Close to the end, when she was dying, my dad and I were arguing again. This time, dad is now bedridden but still expected me to jump at his every demand. Older sis said that when we were arguing, mom had tears falling down her closed eyes. When sis told me this, I felt bad. Later, when dad was sleeping and no one was in the room, I leaned down and whispered to mom. I told her that she can go now. She doesn't need to hang around to protect me from dad. That dad is bedridden now. He cannot hurt me anymore. It's okay to go. .. And mom finally let go - a few days later.
So, as I read this story, I remember all the Rare times that my real mom's personality peeked through. There were only 2 times that I ever recall seeing her alert eyes - not the dull staring off into space eyes. Mom was there for a few brief seconds.
So, no matter what anyone tells you, always remember that your parent or spouse is still in there. They're just lost inside their brain and don't know how to come out of that darkness they're in.
Thank you for the article,as I also Know in my heart my husband knew me and always lioved me. As sad as it was to watch him change,he would always be looking at me and he would hold my hand and kiss them. Crazy as it might sound but at times I can still feel his kisses and to me that is a good thing.
Thank you for sharing your story. It makes me stop to think about the times I've experienced my Mom coming out of the fog and makes me remember to cherish those times. May God Bless you for living through this all these years.
Michele, what a beautiful story... I can so relate to this. Sending you lots of love and hoping you can hold tight to those precious moments now and always. ~Ann
A wonderful article. This reminds me so much of my time with my mother, which I write about in my book "Inside the Dementia Epidemic: A Daughter's Memoir." It look me several years to figure out that Mom was still "in there" despite the dementia, to see past the stereotypes of people with dementia as being "gone" and "shadows of their former selves." Just like Michele's Mom, my mother was able to share love and simple pleasures in the moment, like holding my hand. She may not have remembered my name, but she knew I was important to her and that she loved me. Thank you, Michele.
Thank you for your beautiful article! It spoke deeply to me as I am having this same experience with my 57-year-old husband. He can rarely speak in sentences but yesterday when he stated "How come I love you" I knew he was trying to tell me of his love. Love will never leave us...when he can know longer remember, I will be there to remember for both of us. Your mom is blessed as are you!
It helps to know that advance Alzheimer's patients can still have lucid moments. It helps ease the pain for loved ones to know that they are still somewhat there. A beautiful tribute to this site.
As a former 15 year dementia caregiver for my husband, this brought back so many memories and filled my eyes with tears. Michele speaks from her heart...the love will never die. Susan Kiser Scarff
Thank you so much for opening up to us - it is always so special to read first hand stories from real life caregivers. Most of all - thank you for helping caregivers like me realize that the loved ones we are caring for care for us as much as we care for them.
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Living Proof That Alzheimer’s Can’t Steal Love
I know, because when dad and I are arguing, and when he would hit me in the head while I was changing her pamper, I could see her trying to twitch. Just as when we were growing up, mom protected us girls from our dad's anger. I swear several times this happened, I sensed she was trying to move to protect me.
Close to the end, when she was dying, my dad and I were arguing again. This time, dad is now bedridden but still expected me to jump at his every demand. Older sis said that when we were arguing, mom had tears falling down her closed eyes. When sis told me this, I felt bad. Later, when dad was sleeping and no one was in the room, I leaned down and whispered to mom. I told her that she can go now. She doesn't need to hang around to protect me from dad. That dad is bedridden now. He cannot hurt me anymore. It's okay to go. .. And mom finally let go - a few days later.
So, as I read this story, I remember all the Rare times that my real mom's personality peeked through. There were only 2 times that I ever recall seeing her alert eyes - not the dull staring off into space eyes. Mom was there for a few brief seconds.
So, no matter what anyone tells you, always remember that your parent or spouse is still in there. They're just lost inside their brain and don't know how to come out of that darkness they're in.
love, Celeste