Time spent with mom has been alternately difficult and smile-inducing the past few weeks. She falls deeper into a mind that forgets days and dates and confuses the people that have consumed her life. Her world-in-the-now grows smaller as her world from the past paints the larger portion of her landscape.
I repeat (several times) to mom the day of the week that I’m there to visit and the month of my birthday. And of my brother’s birthday. Mom believes that she missed both, that she failed to celebrate either one at the appropriate time. “No mom,” I’ll say. “You didn’t miss them. We went out to eat for my birthday and we sent a card to your son for his.” After she fails to remember either occasion, she shrugs and mutters, “I don’t know…” Those have been her favorite three words of late.
Two minutes later, mom will ask again, “When is your birthday?”
I continue to be both this woman’s daughter and her sister, Jeanne. This past Saturday, mom asked if my husband and I had bought the family home in Milwaukee. (While she forgets what happened yesterday, she remembers the name of the street where she grew up.) “No mom, that was your sister, Jeanne, and her husband.” Mom wanted to know if Jeanne was alive and I said, “No mom, she died a long time ago.” I thought about this later and wondered if I had confused her further. Mom thinks I’m her sister, but I just told her she died years ago.
At least two friends have told me to not argue these points with mom, to let her have her own reality. It’s less confusing that way.
I did a better job a week earlier of letting mom believe I was, in fact, her sister. She asked me what I did all week and I answered the usual: I went to work, went to the gym and made myself supper. “The gym?” was mom’s question, which quickly led into, “Do you remember when we were at the gym, sitting on the floor, with our feet together…and I let one go?” She was smirking. I quickly replied, “You farted? How stinky!” There was a seldom-heard belly laugh from the 95 year old. Her sister/daughter joined in.
Those with dementia are still people and they still have stories and they still have character and they’re all individuals and they’re all unique. And they just need to be interacted with on a human level. ~Carey Mulligan~
The stories told, regardless of who I am on any given day, are becoming memories. I close my eyes and try to store them in a section of my own brain: The recounting of ice cream shared with siblings on the front porch, of an uncle that returned to his homeland of Germany, and the countless times that her mother made meals for a family of 15. Mom repeatedly tells me that her own mother “was a saint.” I often wish I had known my grandmother as I bet she was a strong and strict, but loving, woman. I cannot fathom the amount of time and energy she expended in taking care of her large family.
Back to my role as daughter/sister…I wonder why my brother is always her son, why that never wavers like it does with me. Mom never mistakes her son for anyone else. Never. My smart-aleck self screams, “It’s because he’s a sinner!”
My brother has been in a long-term, non-marital relationship that goes against the grain of a strict Catholic mother. Every time I visit with mom, she asks, “Did he get married?” I respond “no,” but say they are engaged (I made that up for attempted appeasement purposes). Mom always replies with, “It doesn’t matter, it’s a sin.” Yes, mom. I agree for the sake of agreeing. It’s as useless to set her mind to rest over the matter as it is to resist The Borg or a double-dark chocolate chip cookie. I don’t know if it’s the dementia or mom’s persistent will, but she can be like a lion clamped down on a piece of raw meat. She doesn’t let go.
Mom’s confusion will drive her to make anxiety-filled phone calls to me in between visits.
“You need to come right away!”
“Mom, it’s 7:30 at night. What’s wrong?”
“My checkbook…it’s a mess. The checks came out and now I can’t get them back in.” Mom tells me this with a trembling voice. To her, this is a tragedy.
I have no idea why she was in her checkbook as she doesn’t have the vision or steady hand to write checks. I could guess that it relates to her constant question of how much money she has and will she have enough to stay there. My answer is always, “Don’t worry mom, you have enough money and you don’t have to go anywhere.” It never calms her mind. She’ll ask again next week about the money situation. I did not rush to mom’s aid that night. A calm voice and a promise that I would fix her checkbook on that Saturday brought some ease, although mom ended the call with her favored, “I don’t know…” I suspect that she forgot about the entire phone call by the next day, instead focusing on how much she detests the food that is served at assisted living. She calls it “crap.” Evidently, that’s a word that she has not forgotten.
This may sound awful, but I have learned to lie to mom. For her own well-being. Just as she worries about the balance of her checkbook, she has no clue what goods and services cost these days. I lie to her about how much her perms cost, how much she pays toward room and board, and items I pick up for her at the store. If mom believes that I overpaid for anything, she becomes agitated. “Fourteen dollars for a hair cut? That’s too much!” That was actually the truth. Fourteen dollars. I didn’t tell her that I usually pay around $30 for my own hair cuts, which I consider to be fair. Mom would probably faint. In reality, I try to share as much of the truth as possible, as long as the truth doesn’t confuse or irritate. Some days, it’s a fine line that we dance around, kicking our heels up between the past, the present, and an opaque cloud of what’s in between.
Most days, mom remembers her husband, but she doesn’t talk about him as much as she talks about her childhood, parents and siblings. When we visit dad’s grave, she tends to be silent. On Saturday, mom asked if her name was still on the tombstone and if the flag would be all right through the summer. She does not remember when her husband died, unless I tell her. I imagine the last three years have felt like an eternity.
It is what it is, the present. There isn’t anything I or anyone else can do about mom’s situation. I can’t revive her sight or hearing or wave a magic wand for a clear mind. What I can give mom is the interaction of a sister/daughter, a day out for a meal and ice cream, or a listening ear when mom calls to insist she’s supposed to “be somewhere.” I used to pray for those things – a moment of clarity for mom or the ability to see flowers with color. That has changed recently, as I pray her prayers to be answered. Mom asked one of her repetitive questions on Saturday, which led to an interesting end.
“What kind of church do you go to?”
“It’s non-denominational, mom.”
“It’s not a Catholic church, mom.”
“Do you pray at your church?”
“Yes, mom, I do.”
Then I turned into the questioner…
“What do you pray about, mom?”
“I pray that I go to heaven.”
“I don’t think that’s in question, mom.”
“You think so? What if they run out of room?”
I smiled. “That’s not going to happen, mom.”
“Are you sure?”
“Yes, I’m sure.”
With a sigh and a shrug, mom simply replied, “I don’t know…”