My paternal grandmother died in 1960 of what doctors then called “senility and hardening of the arteries.” Doctors could be more specific when my mother died of a mixed syndrome, Alzheimer’s and vascular dementia, in 2003. My Nana lived with us, so my brother, Drex, basked in her love from the very beginning. I was about four years old when Nana died. The only visual memory I have is her picture in my parents’ wedding album, but I have sweet emotional memories: combing Nana’s hair and having her wash me up and change my clothes without telling my parents that I’d wet my pants.
Even though Mother lived 800 miles away, before the age of Skype, Ryan knew his grandma’s voice; she sang and read to him and they shared those favorite activities when we got together several times each year. She was diagnosed before my daughter was born.
As Mother and Nana’s brains deteriorated, their relationships with their grandchildren did, too. Drex remembers that Nana changed toward him. Once he woke up to find her standing over his bed, grimacing with fingers flexed like claws. He called her name and she “came to,” wondering why she was in his room. Drex says that Nana never hurt him, physically, but I’m sure the confusion, wondering why Nana didn’t like him anymore, and the terror of that awakening hurt more than he is willing to say. I remember crying bitterly for what seemed like years after Nana died; I didn’t understand why she was gone. Drex never talked to me about Nana.
My mother became obsessive about feeding everyone and asking if they were okay. It drove my husband nuts, but one day, I found my eight year-old son, hiding in the basement, crying and saying, “Mommy, she just won’t leave me alone.” Ryan cried for such a long time after visiting Mother in the nursing home; I stopped taking him to see her. He remembered the real Grandma; she didn’t remember him anyway. My daughter never knew a “real” Grandma. Being the little woman she’s always been, not only did Lauren not grieve, she gave orders. “Grandma, why are you doing that? Didn’t I tell you…?” I pulled her aside and said, “Sweetie, you can’t talk to your grandmother like that. You have to be more patient. Grandma’s brain is broken.” True to form, Little Miz Ma’am said, “Mommy, I’m just a little girl. I can’t deal with these broken-brain grandmas.”
I stopped taking Lauren to the nursing home when a group of dementia residents surrounded us. They patted Lauren’s cheeks, asking over and over, “How old are you? What grade are you in?” I picked her up and comforted her as we walked behind the nurse who rolled Mother into her room. I told Lauren that the seniors weren’t trying to hurt her; they just remembered that they loved grandchildren, anybody’s grandchildren. My seven year-old little lady said, “But how can they remember the love when they’re ghosts. I don’t mean ghosts like Casper, Mommy. They’re ghosts to themselves.”
Whether they grieve, whether they’re afraid, you have to help your kids prepare for the devastation dementia can bring into their lives. The moment you notice the senior changing, get a dementia evaluation from a team of professionals who know what they’re doing: geriatricians, Alzheimer’s centers, geriatric psychiatrists, or neurologists. Be sure the team has direct access to social service professionals, caregiver support programs, and elderlaw attorneys who can help you put together a comprehensive care plan. Once you know what you’re dealing with, talk to the kids about what’s happening and what they can expect. Maria Schriver (whose father, Sargeant Schriver had Alzheimer’s) and Sandra Spiedel also wrote a helpful book, What’s Happening to Grandpa? Also, share with them some of the videos, books and other resources the Alzheimer’s Association has for kids. http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp .
Next Week: Resources are fine, but YOU are the first line of defense in preparing your kids for dementia.