At first, my brothers and I didn’t realize what was going on. Our Mom, a former restaurant reviewer and talented, adventuresome cook, no longer cared about cooking or what she ate. She complained about feeling low, saying she couldn’t find joy in life. She started falling, resulting in trips to the emergency room for stitches. Then, she side-swiped another car and didn’t realize she’d done it, and it started to sink in for us.
Mom has dementia, though seven or eight years in, we still don’t know what kind. Not Alzheimer’s. Maybe frontotemporal dementia, maybe not.
Yesterday, the New York Times front page was dominated by a story on frontotemporal dementia A Rare Form of Dementia Tests a Vow of ‘for Better, for Worse’ that is #1 on the most emailed list today.
Frontotemporal dementia, also called frontotemporal degeneration or Pick’s disease, refers to a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior and language. Some forms of the disease also cause movement disorders.
… Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right answer. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis or psychiatric illnesses like depression, bipolar disorder, post-traumatic stress or anxiety. Many relatives of patients say doctors dismiss their reports of personality change. But it is real.
Mom has a lot of the personality changes mentioned in the article, and differences too. Her balance issues are outside the norm for frontotemporal dementia, but difficulties forming word and reading and other symptoms are typical.
Thankfully, Mom is very sweet and loving and still knows who we all are. I count us lucky that she hasn’t become angry and combative as some people with dementia do.
No one wants to age this way, and we really don’t want to see our parents go through it.
I thought Mom would one day actually write the cookbook that we and her friends have been begging her to publish, and that she would teach my girls how to make some of her favorite dishes. I thought we would take my daughters on a girls’ trip to California to visit her oodles of family there and would get to travel to far off destinations together. I thought Mom would get to share her life stories with her grandchildren.
I thought I would have more time with her, the real her.
Mom is a shadow of the mom I remember, but I still have some of her. I can see how much she loves me when she smiles at me, and I think she knows how much I love her. She likes looking at photo albums and reminiscing together and hearing about what’s going on in the family, and I like catching her up on the latest and finding ways to tell her how great a Mom she’s been.
This weekend, I opened an old trunk among my mother’s things and found my grandfather’s desk diaries going back decades, to the 1930s. Grandpa wrote notes about his day-to-day life every day, including everything from courting my grandmother, to my Mom’s birth, all the war years, with newspaper clippings, Mom getting married and my brothers’ and my births. On my birthday, on July 27th, there’s a note in Grandpa’s beautiful handwriting with my full name and this: “Cable rec’d: Ian and Jimmy announce baby sister. Six pounds twelve ounces. Everyone fine.”
I cannot wait to show these to her this week.
For those of you are going through similar things with your mom or dad, a grandparent, aunt, uncle or friend, my heart goes out to you and I’m sending love, hugs and understanding.