Meet Helen...

Helen at the age of 19

My 101 year old Grandmother Helen is the other half of this advocates journey. She was the eighth child in a family of 12 brothers and sisters.  Her parents, a groomsman and maid, emigrated from Poland and settled in a small farming and coal mining community in Pennsylvania.


Adalbert and Agnes around 1905
Note: They are holding hands

When someone lives long enough to see 5 generations (Helen was a great-great Grandmother), details of the early years almost become folklore. Every family has stories about young love, search for a better life, war, tragedy, survival, joy and unconditional acceptance. Family history are threads carried through the generations that weave into our lives and give us more than just DNA inheritance.

Details of the later years center around safety, quality of life, nutrition and physical activity. She walked without any assistance, was continent, and had conversations that displayed her sense of humor, stubbornness and feelings of confusion and loss. Thanks to my mother’s quality of care, she only took vitamin supplements, no medication. I raised two children, but being a caregiver for someone with progressing dementia is completely different. They don't learn or understand boundaries. As I have virtually no medical training, and only limited exposure to her behavior from family gatherings, it was extremely frustrating to constantly be fighting a battle I was never going to win. My mother never shared the details of what was required as a caregiver and wasn’t well enough to answer questions or give instruction. I was overwhelmed with what I didn't know and worried about doing it 'right.' I finally went online to do some research. I literally stumbled upon a very concise presentation by Teepa Snow called Caregiving Gems on a site called Home Instead Senior Care of Sonoma County. It was like a light bulb turning on with choirs of angels singing! It was my epiphany moment. It is directed toward caregivers and was exactly what I needed to understand her world. As I talk with others that have parents and loved ones diagnosed with this disease, our stories are the same and almost text book predictable. Someday I’ll be able to have roaring belly laughs about some of the things we went through. I have profound remorse for the way I handled some things, but I didn’t know…

 Here are a few gems:

Grt Grandma Agnes in her garden

>Once we took Helen out to dinner for my mother-in-laws birthday. She just kept asking (very loudly) where the ‘body’ was. She often thought we were going to a funeral but never knew who died.

>During her annual physical, she was asked if she knew who the president was. She confidently remarked: “Roosevelt”

>She would often sit in a rocking chair in her room and talk to a picture of her mother on the dresser. She would tell her how much she missed her. Sometimes she would ask me if she was still alive. It took me a while to figure out what to say. I couldn’t imagine going through the grieving process over and over. She grieved for all of her brothers and sisters too. Considering that she didn’t know who I was and only occasionally recognized my mother by name, her world was a very lonely place.

>Helen would occasionally conspire to go back to the farm. She would say she was just curious about what it looked like now and if anyone she knew was still there. Then she would name off a bunch of people I had never heard of before. She would ask about what types of jobs there were available. With all the “good looking houses,” she was sure there were plenty of jobs she might be able to get to raise money to go back home. You couldn’t talk her out of it either.

I’m sharing these personal stories so that others might identify with something similar. I firmly believe in taking care of your own. Caregiving has definitely been the hardest thing I ever had to do. You aren’t appreciated because there isn’t the capacity for recognition. You sacrifice financially with the pressure of knowing there are limits to what you can provide. You can become bitter or you can take a step back and know you are doing the right thing, and this is only temporary. Life, even long ones, are temporary.

Gray hair is a crown of splendor; it is attained by a righteous life.  -Proverbs 16:31

Helen Majeski Oct 12, 1913 - Apr 2, 2015