“Christy, I think your Mom is having memory problems. Have you noticed?” my Aunt asks me. A lot of people have been asking me this one lately. No, I tell them. It’s anxiety. She is just so worried about my Dad. She worries all the time and is afraid to leave him for very long, so she cancels things she used to do. She has been cancelling book club, volunteering, various and sundry social engagements. But the question nags at me. Is it anxiety or is something else going on?
My Mom tells me, “I’m afraid I am more like my mother than my father!” She refers to her mother who died the day before her 80th birthday, who probably had some form of dementia for years. She would walk around her home with a burning cigarette with a 5-inch ash at the end, with my grandfather following behind with an ashtray trying to keep the house from burning down. Her father lived nearly another 20 years and died at age 99. His memory was as clear as a bell, although he did tell me the decades seemed to blur together. My Mom worries a lot about my Dad, but she worries a lot about that, too. She worries about her memory. Should I worry, too?
I’m a school psychologist with a background in counseling and various other things. I’ve worked with adults and children. I’ve worked with people with mental illness. I know anxiety when I see it, I tell myself. This is anxiety. But my conscience gnaws at me. Is this denial on my part? Sometimes we are most dangerous when we think we know things.
I visit my parents and stop to check that my Dad’s pillbox is full for the week. I’ve been checking this recently because my Mom tells me Dad messes it up after she fills it. He is on a lot of medication. I look and sure enough, pills have been moved and everything is a jumble.
“Who changed everything?” I ask them both. I sound like the 3rd grade teacher my mother was for 25 years, interrogating the 9 year olds about the messy room or missing markers. This bugs the crap out of my Dad, who huffs. “She keeps messing with it,” he tattles. She is ratted out again and looks aghast and indignant. Seriously – is this what it has come to? I pull back from my frustration about having two more “children” to care for. Eventually, I fix the pills and tape a sticky note to the front, “Do not move, remove or add any pills until you call Christy first”. Yeah – that’ll work.
Literally the next week I am in the same predicament. Exasperation sets in and I fix the pills again. This is crazy – do I need to come here three times a day to give my Dad pills? Can I hire someone to come in to administer meds? Is that even a thing? I am certain it is a thing, but what is the cost? I can see blowing through all their savings in a short amount of time hiring a bevy of caregivers to come in and out. Perhaps their insurance will cover this cost. I commit to investigating their policy. It’s another to-do on my growing list of to-dos.
I am not particularly proud of myself in how I handled all of this. I must give credit to my son, and especially my daughter, who was always patient, kind and gentle with my Mom and Dad. She was especially gentle with my Mom, with whom she had a beautifully close relationship. She was always able to answer the same question dozens of times as if it were the first time she was asked. It was grace and kindness personified to witness. She often taught me how to behave.
One of the most difficult issues I faced while caring for my parents was becoming aware of how much I did not know about how to care for them. It is very disorienting to become aware of that mystical space of “What I know I DON’T KNOW”. I know what I know. I am educated, am an avid reader and researcher, a lifelong learner. I’m sort of a geek that way. Ask me about special education law, ask me about wrangling or trying to coach 15 five-year old girls on an AYSO soccer team, ask me about my favorite films of Bill Murray or Christopher Guest, or ask me about the homeless crisis. I have a lot of random knowledge. I know what I know. I also know what I do NOT know. I don’t know anything about high finance. I don’t know anything about cricket, other than it uses a really big bat. But now I am more aware that there are things I don’t know I don’t know. That is a mysterious realm I came to know all too well.
I think I had an idea that my parents would never really change and that they would always be the lively, fun, witty parents from my childhood. My father had a stroke around age 60 before I was married and had children. He lost his sharp wit and some of his confidence after that. He also lost his job earlier than expected. This diminished him in ways many older people must face – typically men from this Silent Generation. But he persevered and moved with my Mom from Ohio to California to live in an active senior area to golf and travel and have fun. They did have fun, too. My Dad had always been an avid golfer, and after her retirement from teaching after 20 plus years, my Mom became an avid golfer as well. Always a popular and energetic woman, my Mom was a member of a number of groups in the community. They were active in their church. She volunteered for community organizations. And they both doted on grandchildren. My brother’s two sons were grown and living in Michigan, but I had one young child when the moved out, my son, and quickly had my daughter after they relocated. My husband and I also relocated from Southern California to Northern California to be closer to them. Not long after, my sister had two girls and they lived about 2 hours away – which is nothing in California commute time. So they were very involved. Very active. Very happy. And then they aged – slowly at first and then quickly at the end. To see them as I have described them here was quite painful for me.
While rates of Dementia’s including Alzheimer’s disease in people over the age of 65 have dropped from 11.6% in 2000 to 8.8% in 2012, the devastation is still startling. To witness one’s parents in decline is heartbreaking. It is also a hallmark of the Sandwich Generation.
Have you experienced a rapid decline in functioning of a parent or loved one? I’d love to hear from you. Let’s keep the conversation going.