Faces Change, Hearts Don't: Alzheimer's is Stealing My Mom
I hear so many people say that they are devastated because they have lost their loved one to Alzheimer’s disease even though their loved one is still living. “Alzheimer’s disease has stolen my mom.” “My mother doesn’t know who I am” “She isn’t the same person.” My response is, “She is the same person she was 10 years ago, 40 years ago.” She is an elderly, forgetful, younger version of the person you call mom.
If your mother with Alzheimer’s disease believes that she is 25 years old (although she is 70), she is 25. If you try to reason with her or orient her to time, you will only confuse her further, agitate her and frustrate yourself. She can’t come back to your reality so you must live in hers. She may not recognize you as her daughter but that is because if she is 25, then you are 4 years old (even if you are 49) so she doesn’t recognize the grown woman who has been taking care of her because her Karen is only 42” tall with a messy head of curls. Lucky for you, you inherited your good looks from your mom’s side of the family so don’t be surprised if she calls you Carol (your aunt’s name) or even “Momma”.
One of the most upsetting things for an adult child caring for a parent with Alzheimer’s disease is that as the disease progresses, their parent doesn’t recognize them. . Don’t worry, raising a child like you wasn’t so traumatic that your mother blocked out her memory of you. The past 45 years are gone along with the degeneration of her brain, damage (because of the atrophy, plaque, tau, cell death) to the hippocampus – the sea horse shaped part of the brain that once was responsible for her short term memory of what she had for breakfast this morning, who she voted for in the last presidential election or eating the candy bar that she found in your desk yesterday. The atrophy and damage will continue to spread throughout the brain, affecting not only recent memory but many other cognitive and eventually physical functions.
A person’s identity or sense of true self is based on roles, religious and political affiliations, values, abilities, traditions, beliefs and relationships. With the onset of Alzheimer’s disease, your mother’s role will change, her abilities will change but she can still laugh and cry- she has a heart full of emotions and a soul that still needs to be nurtured. Her name is still Sandy she still likes to eat Grape Nuts for breakfast, she still loves dogs, she is still a republican, she is still terrible at playing checkers, she is still the crafty person that crocheted that beautiful afghan that is on the back of the sofa and the person that made the flower girl dress you wore for your Aunt Carol’s wedding, “Beautiful Savior” is still her favorite hymn. The values and beliefs, the personality traits that define what is in your heart are constant; they remain regardless of memory and time.
Because your values and personality traits are realized during the formative years -from birth to the age of 21, there is a good chance that you have learned or have modeled yourself after your parent(s). You will share many of the same values, beliefs and want to uphold many of the same traditions. This is how you can maintain your relationship with your mother. Bake something together from a recipe that your Nana gave to your mom that she gave to you; reminisce about your favorite pet, the family vacations, Christmas, the house you lived in.
To give a person living with Alzheimer’s disease or any illness for that matter, the best quality of life, we must not only take care of their basic needs, we need to nurture their soul by encouraging and providing opportunity to exercise their faith, engage in hobbies and activities that have fulfilled them and brought them joy; honor them by carrying on traditions and custom; remind them of their accomplishments, talents and how much they have loved and how much they are loved.
There is no way to slow prevent or cure Alzheimer’s disease. There aren’t any time machines to take you back to the age of four or magic potion to make us look 45 years younger. All we can do is honor who they have always been by loving who they are now.