By: Jennifer LoBianco
I’m not sure aging with dignity is possible. In theory it’s a nice thing to say and I’d love it if I could do it when I’m older and grayer, but having watched my mother decline over the last three years from dementia, I would argue the opposite.
She went from a seventy-five year old active, independent woman, still driving herself everywhere, recently retired at seventy from a job she loved for several decades, cooking, cleaning, doing all of the things a doting mom did plus having a job, kids, husband, grandkids, to being completely dependent on others, especially my father, her full time caregiver.
Watching her decline and lose all sense of self is heartbreaking and something no one should ever have to experience or see firsthand. She cannot walk, eat, dress, or conduct personal hygiene without help. This happened almost overnight. She lost fifty pounds in her first year with dementia because it threw her into a downward spiral and she was so stressed about eating she could no longer even swallow. She had a feeding tube inserted surgically, while under anesthesia, into her abdomen, and three hours later when no one was watching she tore it out. She had no recollection of doing this and her doctor said in his forty years of practice he never saw someone able to do this nonetheless someone in no pain from doing so.
After this episode, which was early on in her diagnosis as we figured out the right care plan, she also acted uncharacteristically in other ways. We recorded her getting up and down to use the bathroom fifty-five times in one night due to the anxiety of starting to have to wear a diaper.
There are many other stories like this in just a few short years. We did eventually find the “right” doctors and medicines to allow her to have a lot less anxiety, she began to eat better, gain weight and function a little more. She is still and always will be completely reliant on others, her cognitive decline will only continue, we know this. But, she still knows who her family is and our names. She still smiles and hugs.
My father is exhausted but remains as loyal to her as he was when they first started dating at the age of thirteen.
When I do think all dignity is lost and I feel the worst for my mom, and she’s at her most vulnerable, she often gets teary eyed and says, “I hate that you have to see me like this and I wish I didn’t need you to do this for me.” It’s at these moments that I know she’s still there deep down inside.
I finally convinced my dad to get some extra help, even though my mom has a strong aversion to any outsiders in the home. I have had many different caregiver experiences and luckily now I work for a company that provides such services. Caregivers are saints, angels, I do not know how someone can do this job voluntarily.
They change diapers, do the feedings, clean everything in the path of someone who doesn’t realize the mess they made. And caregivers who aren’t relatives do this and I’m in awe of their choice.
I have witnessed my mother telling her caregivers to leave her house, that she doesn’t like them, she calls them strangers, she won’t read with them, she won’t do puzzles with them, she won’t take walks with them, she doesn’t like them. Sometimes she acts the same way towards me, it hurts, but they keep going back because they want to. I don’t know how they do it. I have a commitment, I didn’t realize they consider it the same.
They are there to help people age with dignity as much as they can. These caregivers are also there to help my dad, the main caregiver, so he can be a husband, not just my mom’s on-call nurse. They explained it to me once this way and it totally made sense, thinking about my mom’s needs firstly I wasn’t thinking that a caregiver could care for another caregiver.
Recently my mother was choking on a piece of food, which she often does unfortunately, but never did in front of a caregiver. Me and my family know how to deal with this since my mom can usually relax and it will subside, but the caregiver and my mother were home alone. The caregiver couldn’t get the food dislodged so she called 911. The food did come up before the ambulance arrived at the same time my dad did. The EMTs checked on her and left when all was clear. My dad was so thankful for the caregiver’s immediate response not knowing what could have happened if my mom wasn’t able to recover on her own.
Needless to say my family really likes these caregivers and deep down inside I know my mom really likes these “strangers” too.
Jennifer LoBianco is the Chief Marketing Officer of Best Life Brands, a platform of complementary businesses that serve people along the continuum of care. She is the daughter of a parent with dementia.
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