Recently, I used this quote recently without a story to go with it. It definitely can stand on its own with no context, but I felt this story suits its meaning quite nicely.
Yesterday’s blog attempted to unravel the wisdom of the caregiver’s quote, “The worse it gets, the easier it gets.” However, for many caregivers, this quote does not apply. In fact, it’s full of schit. Many caregivers never get relief. Their journey never gets easier.
Recently, one of my Mother’s best friends, Alice, passed away. Alice was diagnosed with Alzheimer’s about 5 years ago. Last Thanksgiving, she survived a stroke; however, this stroke, unfortunately, plummeted her dementia symptoms into aggression and violence.
Sam, Alice’s husband, cared for Alice in their home in Portsmouth, New Hampshire, until her behavior became too dangerous for them both. Their grown children live on the West Coast with families of their own. Being so far removed from their parents, and their parent’s situation, none of them would, or could, fully grasp the severity of their Mother’s disease, nor their father’s stress and exhaustion in caring for her– something we caregivers can relate to and know all too well.
When Alice’s care went beyond Sam’s capabilities, he began looking for a good care facility to move his beloved wife into. However, over the course of 6 months, Alice was in and out of 3 different care facilities because her behavior was so aggressive. She was physically hitting other residents, sometimes throwing anything she could get her hands on. She would yell obscenities and accusations would fly inappropriately. She recognized no one and didn’t allow anyone to touch her. Her care became impossible. By the third discharge, Alice’s physicians said her dementia was in its final stages. Sam called hospice and brought Alice home where she passed away peacefully 13 days later.
Caring for Alice never got easier for Sam. Alice began showing signs of dementia about 15 months prior to her diagnosis, and like many of us in his position, Alice didn’t just show up at the doctor’s office one day and suddenly get a diagnosis of Alzheimer’s. Rather, it took months of noticing subtle and odd changes in Alice’s behaviors for a diagnosis to finally occur.
Her progression was fairly quick, and it was difficult for Sam to keep up. The final six months were the worst part of his journey in caring for his wife. His closest friends were afraid for his life both physically and emotionally. They said he aged 15 years in the five years he cared for her. It was a miracle Sam even survived such a difficult, painful ordeal.
According to Sam, his heart was broken into a thousand pieces every single day for the years he cared for his wife. Words cannot begin to describe his anguish and sorrow.
My hope and prayer for Sam (and any caregiver whose loved one has passed away) is that maybe now he can begin the process of healing and getting some rest knowing that he gave his loved one the best possible care when it was needed the most.
What Is True For Me
The experiences with my Mother have never included symptoms of suspicion, hostility, violence, or any of the many aggressive behaviors dementia can dish out, at least not yet. I am acutely aware of how lucky I am that Mom’s dementia symptoms have not gone down that road.
There are many cases like Sam and Alice’s, where violence and aggression are the unfortunate avenue dementia can take; therefore the caregiver’s phrase, “The worse it gets, the easier it gets,” in this case, does not apply and is, as I said earlier, full of schit.
For now, the only thing I can offer is to say that if your loved one is living at home with you and their behavior is or has become combative and dangerous, please do not handle this on your own. Please get help for your personal safety, and the safety of your family and pets.
Call your local Alzheimer’s Association. They will offer ideas and options to help you.