Alzheimer’s. The word sends chills down my spine. The word creates a bad taste in my mouth, that feeling of old coffee left on your tongue. This disease is painful to watch, as a loved one’s memories are taken away piece by piece, day by day.
My grandmother — a woman who helped raise me — along with my grandfather, walked us to and from school and made us snacks while we waited for my parents to get off work. She became a second mother to me. We sat and watched Wheel of Fortune and, during those long summer months while my parents were working, soap operas. Guiding Light was a favorite of ours. My sisters and I sat on the yellow swing and shared paletas (popsicles) with our grandparents.
My grandmother was diagnosed with Alzheimer’s in 2010 after we accepted that something was wrong. She had left the stove on more than once and had forgotten to take her medicine. It was our wake-up call to seek help.
Her primary physician sent her to have a cognitive assessment performed. Not long after, we realized we had to change how she lived and how we lived as well. My grandfather had passed away years prior, so any legalities were set. Financially, we could not afford to place her in a nursing home, so we had to brainstorm ideas of how to keep her safe. My mother and her siblings had meetings on what they should do. It helped create an outline of our next steps because this disease was not going to stop overnight.
We were at the mercy of Alzheimer’s. We had to learn that there good days and bad days. You just let them come and learn to make them better the next day. You learn tricks to make those tough moments just bumps in the road. I see it as a speed bump. It’s meant to caution you to slow down — not to stop, but to find ways to continue at a slower pace. Life will get turned upside down. There will be fights about dinner, brushing teeth, and when it is time for bed, but at the end of the day, you will know you did your best.
In 2011, I was attending classes online and had just had my youngest, so I was able to be there more during the day. We were fortunate to hire caregivers who ensured grandma would not walk out of the house and wander away. We did have to take preventative measures, such as taking the handles off the stove and putting away items that could harm hers or others.
We had to limit our family activities. I come from a rather large family that hosts monthly birthday parties, has fish fry gatherings, and occasionally watches movies together. With 20 to 30 people in my grandmother’s home, we had to learn the loud noise was not good for her. It agitated her; too many unfamiliar faces made her nervous. Even though she helped raise every single one of them.
Some days, she was anxious and aggressive. Other days, she would cry and wonder why her father had not come to pick her up. Did it break my heart to lie to my grandmother — my second mother — that if she took a nap, her father would be there when she awoke? Every time. But I did it, so she wouldn’t fall asleep in the living room chair and be afraid when she couldn’t recognize where she was. I had come into her room one morning to wake her up, and she had a suitcase. She was packing to go home. Those moments were hard.
My children were confused. They couldn’t understand why grandma was doing this because it was her house. I had to explain what was happening. Through the rising lump in my throat and tear-filled eyes, I explained what Alzheimer’s is. At the time, my oldest children were six and seven. They did not fully understand what was happening, but now they are older and understand what it means and why we participate every year in the Walk To End Alzheimer’s event to raise awareness.
With my own children, I have come to the horrifying revelation that one day that this debilitating disease could rob me of my memories, and that terrifies me. I take more pictures, and I let those moments of hugs and kisses last a little longer. I spend a little more time sharing advice and writing in journals — even just small sentences on days I feel should be remembered if I am unable to one day.
Coping with Alzheimer’s
My grandmother passed away in 2015. We are still coping with the loss. I don’t think it ever gets easier. I would love to run up the steps to her house, sit with her on that yellow swing, and share a paleta one last time.
I cope with her loss by informing others of my experiences with Alzheimer’s and how to stay strong when in doubt. There are a few things I recommend to make life a little easier; they worked for my family and me.
- First, make sure you have a strong support system. Make sure you and your family are all on the same page with legalities and the nature of healthcare.
- Ensure all your loved ones have a living will. Life is full of unexpected moments, and having that will help to alleviate any of those lingering questions.
- Learn everything you can about Alzheimer’s. Educate yourself and others about what it means.
- Create a binder that has your loved one’s medicines, a daily log of what he or she has eaten if possible, and what allergies he or she has as well as copies of the will and end-of-life wishes.
- Have a plan of action in case your loved one wanders away. Those who suffer from Alzheimer’s leave their homes with the intention of just going to the store or for a walk and get lost.
- Lastly — this is important — make sure to take care of yourself. Easier said than done. We all have busy lives. Having children and taking care of a loved one with Alzheimer’s was not easy. I did not take care of my grandmother alone — my sisters, mother, and her siblings all carried the weight of ensuring my grandmother was safe.
Understand you are not alone in this battle. Many want to close themselves off so that others do not see what is going on, but hiding away and trying to protect others will lead you nowhere. Resentment sets in, and feelings of loss will cause you to be in even more pain in the end.
Always remember you are doing the best you can and are helping your loved one. You are making a difference.