I'm the daughter of Dorothy, who was diagnosed at age 60 with early-onset Alzheimer's.
I am turning 59 next week, only one year away from the age my mother was diagnosed with Alzheimer's disease. She's been gone now for nearly three years but fortunately for me, her memory is vivid in my heart and mind.
I was 40 when we thought Mom was depressed over the death of her husband. However, after ruling out physical disease or major depression, the terrifying diagnosis of Alzheimer's was given to us.
She lived 17 years with the disease. Her body was healthy, but her mind kept declining. Each and every time Mom lost some of her abilities, I grieved over those little losses that kept her and I close. Looking back, I spent so many of those years in grief over this disease taking her away little by little.
I have two brothers and two sisters, all who helped in the caregiving. It touched us all to our core; however this story is about my own personal experience.
Mom lived in her own home with my brother for several years until one day, she decided to try and leave the home, undress herself and walk aimlessly. With the help of Rush Presbyterian Alzheimer's Disease Center, Dr. B. Gierl and his staff, we all decided it was time that Mom needed nursing home care.
After several attempts at finding the right one, we found one where the staff was consistent: two aides that worked on the unit for over 17 years, as well as a few very caring nurses. I do believe that our attentiveness to our mother with frequent visits and many talks to the staff helped assure the best possible care under the terrible circumstances.
My visits to her consisted of bringing her favorite foods, holding her hand, telling her everything about my life, the birth of two of my grandsons who she got to see, but don't know if she knew. I recall the smile on her face when I brought them for her to see. I would put them in her lap, and although she couldn't express in words, she definitely expressed by the stroke of her hands on their faces and the smile on her face. She would just nod her head in approval.
We made our visits to her meaningful, not only for her, but for us. I didn't realize until after her death how much I still needed her, even though I was taking care of her.
She lost her ability to speak, focus, walk or relate in our terms, but she never lost her ability to smile when she saw a visitor. I remain firm that there was a piece inside of her that knew each and every one of us, however she mixed information and couldn't verbalize her feelings.
The nursing home unit had 40 beds, and I recall only seeing a handful of visitors. Most people put them behind locked doors, thinking they were not human anymore. I have no regrets from beginning to her death as I know I still treated her with respect and dignity, never correcting her and getting angry. I did leave the nursing home with tears though on many occasions.
The week before her death, I felt restless as she broke her arm and her energy began fading. I'd call the nursing home daily to check on her. They didn't report that she was failing, however, I knew in my heart that her death was approaching. I think the pain of her broken arm and finally the lack of will to go on is what began her very easy decline into her final days.
I called one day to speak to the head nurse and the physician was on duty. I asked how my mother was and he said "she's failing". I said, "You mean she's dying," and he said yes. I called my sisters and brothers and then hospice. Hospice said they'd meet me at 3 p.m.
I arrived and immediately went to my mom's room where her eyes were closed and she was restless. I knew she was in her dying phase. Hospice confirmed that; all I could do was sob. I wanted to take her home to my place to die, yet the lovely nurse from hospice asked me why that was so important. She informed me it would be difficult on my mother to transport her, that she was in this nursing home for six years, and we could all stay there for the evening; they'd give us a private room.
We brought a CD player and some of her favorite tunes. We ordered pizza and sat holding her hand telling her our stories as well as thanks for all her love throughout the years and prayed with the hospice nurse. It was 7 a.m. on September 30 when our favorite nurse came on duty. She opened the bible and began reading one of my mother's favorite passages; then mom took her final breath.
I will never forget her, her life, her illness or her last day. I still cry over her loss, over her disease, but I know now she is at peace. Everyday I feel her in my heart, in my own actions, in what she taught me. She is gone but not that far away.