Today I read something very poignant from Bob DeMarco and Alzheimer's Reading Room .... ”When Someone living with Dementia believes something to be true, it is in the Alzheimer’s world." This strikes me as one of the most difficult but important things to do, live in the moment with the person you love who lives in the Alzheimer’s world.
I found this especially true with my mom. As some may know, but many may not, I was the full time caregiver for my mom, a wonderful, spirited, loving and dynamic woman who lived with me for 13 years, until she died at home, our home, in her sleep, at 93 years young. For many years my mom lived with me because well, she couldn't really do it by herself after my dad died. She was 80 years old, had lived as part of a family, as a daughter, then wife and mother her whole life. And now, after my father’s death, she was faced with something she never experienced, being alone. And she did not want to....live alone.... So, through the benefit of love, luck and advanced planning, mom came to live with me in NYC – and enjoyed her life very much.
But as she passed from her 80s into her 90s, what was once forgetfulness and the desire to have me help her with daily activities became Dementia, Sundowning and the need for daily 24/7 care. And the necessity to accept HER reality, as opposed to attempting to bring her into MY reality, the one I thought was the true reality. With the help of wonderful medical professionals and my own background in using the arts as a tool for therapy, I learned that what day or time it was did not matter. What mattered was the comfort my mother felt in HER world.
While always under superb medical care, while being in regular contact with all her doctors, and having made the decision well before hand that my mother wanted to be home, not in an institutionalized setting, I and my brother became her world.
In what we knew were her final days, mom began to talk, and talk, and talk ... for 48 hours straight, never wanting to rest, lay down, sleep. So I stayed up with her and listened. And when she called me by her eldest sisters’s name, Johanna, rather than argue and tell her, “It’s me mom … Maryellen”. I answered to Johanna. That was HER truth in HER world. And then, the most amazing thing happened. My mom said to me, ”Johanna, there are people in the room. You need to make coffee. Mama will be very upset there is no coffee on”. Now, it was 2:30am … she and I had been up for over 48 hours straight. She was in her bedroom, the lights were dim, but not out. But she wanted coffee to be brewed for the people she saw in the room. She settled down once she smelled the coffee. I got her settled in bed, smoothed the sheets, fluffed her pillow and she seemed to fall asleep. Her breathing became calm and regular. Her face peaceful. I sat with her a while and when it was clear that she was sleeping and was calm, I withdrew from her bedroom.
My mother died that night. In her sleep, in a bed and room that was hers and in a reality that was HERS. Had two people come to help her on her journey? I don’t know. But at least, for my mother, she was pleased because they had coffee.
I found this especially true with my mom. As some may know, but many may not, I was the full time caregiver for my mom, a wonderful, spirited, loving and dynamic woman who lived with me for 13 years, until she died at home, our home, in her sleep, at 93 years young. For many years my mom lived with me because well, she couldn't really do it by herself after my dad died. She was 80 years old, had lived as part of a family, as a daughter, then wife and mother her whole life. And now, after my father’s death, she was faced with something she never experienced, being alone. And she did not want to....live alone.... So, through the benefit of love, luck and advanced planning, mom came to live with me in NYC – and enjoyed her life very much.
But as she passed from her 80s into her 90s, what was once forgetfulness and the desire to have me help her with daily activities became Dementia, Sundowning and the need for daily 24/7 care. And the necessity to accept HER reality, as opposed to attempting to bring her into MY reality, the one I thought was the true reality. With the help of wonderful medical professionals and my own background in using the arts as a tool for therapy, I learned that what day or time it was did not matter. What mattered was the comfort my mother felt in HER world.
While always under superb medical care, while being in regular contact with all her doctors, and having made the decision well before hand that my mother wanted to be home, not in an institutionalized setting, I and my brother became her world.
In what we knew were her final days, mom began to talk, and talk, and talk ... for 48 hours straight, never wanting to rest, lay down, sleep. So I stayed up with her and listened. And when she called me by her eldest sisters’s name, Johanna, rather than argue and tell her, “It’s me mom … Maryellen”. I answered to Johanna. That was HER truth in HER world. And then, the most amazing thing happened. My mom said to me, ”Johanna, there are people in the room. You need to make coffee. Mama will be very upset there is no coffee on”. Now, it was 2:30am … she and I had been up for over 48 hours straight. She was in her bedroom, the lights were dim, but not out. But she wanted coffee to be brewed for the people she saw in the room. She settled down once she smelled the coffee. I got her settled in bed, smoothed the sheets, fluffed her pillow and she seemed to fall asleep. Her breathing became calm and regular. Her face peaceful. I sat with her a while and when it was clear that she was sleeping and was calm, I withdrew from her bedroom.
My mother died that night. In her sleep, in a bed and room that was hers and in a reality that was HERS. Had two people come to help her on her journey? I don’t know. But at least, for my mother, she was pleased because they had coffee.
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