November is National Family Caregiver Month
Six years ago, on my 55th birthday, my mother Doris stopped recognizing me.
It was the hardest day of my life.
Their group home was hosting a party for me and one of the residents played “Happy Birthday” on his harmonica. My mother, Doris Woodward, didn’t understand what was going on and threw her piece of cake on the floor. I held it together and tried to keep the mood light. But after the party was over, I went back to my car and sobbed.
When my mother was diagnosed with Alzheimer’s disease in 2006 at the age of 77, I was shocked. Except for a distant uncle, no one in our family had suffered from memory impairment. My great grandmother died at the age of 106 and my grandmother at the age of 98. I always thought it would be the same for my mother.
Fourteen years after her diagnosis, my mother is now non-verbal and I know more about memory impairment and all of its nuances than I ever thought possible. After my mother was diagnosed, I threw myself into the diverse roles of caregiver, researcher, and health advocate. I made it my business to learn as much as possible about Alzheimer’s disease.
Something important to know about my mother is that she never wanted to be a burden to her children. She made my sister and I promise that she would never move in with us. She didn’t want us to be full-time carers when her health got worse.
Although she offered this basic information, and we had a pre-order sheet that she had filled out, we had never talked about the specifics of memory impairment or where she would like to live if she needed a higher level of care than the assisted living facility she lived in in.
As the disease progressed, I made the decision to take her to a group home for people with memory disorders, where she would be looked after around the clock. It was a decision full of emotion and guilt. I wasn’t exactly sure if that was what she really wanted. But by then she had deteriorated to the point where she couldn’t make cognitive decisions. Since my sister had multiple sclerosis, it was up to me to make these decisions for my mother.
With Alzheimer’s every day is different. They just don’t know how it will turn out. Some people hallucinate or wander, others don’t. You can learn and prepare for every possible outcome, but there is no one-size-fits-all treatment plan. From an early age I trained myself not to foresee what would come next: I would accept any behavior that happened. I would wait to see what happens next instead of preparing for conditions she might not develop.
Not every day as a caregiver is fraught with worry and sadness: there are moments of joy, too, and they are important to be cherished. My mom and I play with Legos and treat ourselves to a piece of cake (her favorite). She is still experiencing happiness. But not everyone understands that.
Unfortunately, there is a stigma associated with Alzheimer’s disease and other memory disorders. It is not like cancer where friends and family bring food or do housework. My mother’s friends stopped by to see her first, but as the years went on, the visits stopped. They don’t know how to spend time with someone who is nonverbal when it really isn’t that difficult: read to her, share memories with her. She may not be able to communicate, but she knows you are there.
Each caregiver will tell you how alone they feel at times, despite the help available. It can be emotionally stressful, and coping with those feelings takes its toll. My husband Tim has been my complete and total care partner from the start. He took my mother to medical appointments and lunch. He was also the person I got my strength from. When he suddenly died four years ago, I thought to myself: “How should I do this?”
It was then that I learned the real power of support groups and a vast network of resources. Members of my church came together to share the duties my husband had previously done. You visit my mother when I’m at a speech. I have built close relationships with the aides who look after my mother every day, particularly Janet Wright, the best caregiver I have ever met, as well as the health care providers who treat her.
Then there are the caregivers I have connected to online who also take care of relatives with memory problems. One of my closest friends is a woman I met online who lives in a rural county outside of Saint Louis. We only have two things in common: our husbands are retired police officers, and their husband and my mother have Alzheimer’s disease.
She was one of the people I turned to when my mother broke her ribs and was hospitalized. My mom’s group home was restricting visitors due to the COVID-19 pandemic and I couldn’t be there to help her recover. The pandemic and the lockdown that followed has made it harder than ever to be a caregiver. I feel incredibly guilty for not being able to see my mom even though I know this is the sure thing. And nobody understands this feeling better than my co-supervisors.
The best advice I have for people caring for loved ones with memory problems is to keep the faith. Don’t be afraid to ask for help or assistance because no one can do it alone.
And while you mourn the loss of the life your loved one used to have, you appreciate the relationship you now have with them. My mother may no longer know who I am, but I know she loves me – and that’s enough.
Loretta Woodward Veney is an inspirational speaker and author of “Being My Mom’s Mom”.
This resource was created with the assistance of Biogen.