Things to Remember When They Forget
My mom hides her purse behind her pillow at night. Inside her bag is a roll of pencils, a set of steel pliers, a wallet full of change, four hair curlers, safety gloves, a deck of playing cards and three rubber bands. Why is her bag in that specific spot and as heavy as a box of rocks? A child of the Great Depression, I suspect it’s because she was raised to keep your valuables close, and to throw nothing away. But if you were to ask my mom, she could not tell you why she is carrying the contents of a plumber’s toolbox in her pocketbook. She probably wouldn’t even recognize it as her own. My mom suffers from dementia. She?s all mixed up and she knows it.
Since my father passed away over four years ago, I’ve watched my mother slip deeper and deeper into a shadowy fog of memory loss. The most difficult part is watching her observe the changes in herself. “I just don’t know what’s happening to me. I used to be so on top of things,” she will often lament. Beyond historical events, her cache of recent memories is fleeting. The furniture in our home where she has lived for 35 years is unrecognizable to her. The day of the week, the month, even the year: all are beyond her powers of retention. Facts and details flit away like butterflies.
What is most remarkable – aside from the fact that modern medicine cannot find a cure – is my mom’s resilience in the face of this cruel disease. She tries to laugh. Sometimes she is silly. And even when she doesn’t know where we’re headed, she willingly climbs into the car and comes along for the ride. Rarely does she get upset.
Her situation is certainly not unique. According to the Center for Disease Control, the numbers surrounding dementia are staggering. Worldwide, there are now an estimated 24 million people living with some form of dementia. Sooner or later, we all will deal with parents and loved ones whose health and memories are failing them. As my siblings and I learn to care for my mom, here are some of the lessons I have found to be important.
Get the paperwork in order…
My mom used to keep meticulous records. But as her forgetfulness grows, her efficiency diminishes. In order to establish personal management over finances, our family consulted an advisor and reviewed my mom’s budget, assets, insurance policy and pension benefits. Consider establishing Power of Attorney as well as Medical PoA. If you need to register a joint checking account in order to pay bills, begin the process now. Consolidate any outstanding debt or credit card balances into one payment plan. Carve out a living will and trust if they are not already in place. Keep an active list of all the medications and physician records in the case of an emergency. This often takes time on the ground with the bank, over the phone with agents or in meetings with accountants and lawyers. Summon up as much patience as possible and take the process in steps. Baby steps. You will be pleased with yourself later should your parent get to a stage where you need to be in more control of matters.
Accept them where they are…
Growing up, my mother took great pride in her family’s appearance, including her own. Now I need to remind her on a daily basis to bathe or change her clothes. Although deep down you may want the younger version of your mom or dad back, try to accept your loved one and their current limitations. Concentrate on the now. I draw gratitude from the simple. I am happy that my mom is trying. She is welcoming and warm. She smiles. She is happy to spend time with her grandchildren. My mom still recognizes my voice on the phone. I no longer probe for answers, as it simply flusters her when she cannot recall the details. Instead, I am content that she trusts me to handle her personal matters. She wants to hold my hand during her doctors’ visits.
Mourning the loss of what she used to do – cooking a meal, knitting a sweater, volunteering, calling me on my birthday – only takes away from the small blessings that we still enjoy together.
Put yourself in her shoes (or slippers)…
My mom tires early in the day now and talks incessantly about when we’ll next eat. She repeats herself over and over again, almost to comfort herself with the one or two tales she has not forgotten. She is fixated on making cups of tea and washing her sheets. In this flurry of manic activity, I look at her and see the woman who cleaned and cooked for five growing children; the mom who drove me from mall to mall in the hunt for the perfect prom dress. The sewer; the diaper changer; the listener; the peacemaker. She took in a cousin and raised her as a sister. She buried a husband and cared for her own invalid mother who lived in our house for over a decade. After 74 years, I might be confused and absent of information too. I try to imagine how she feels at this stage of her life, during the moments when I begin to grow impatient with the endless questions and her pace and her wonder.
We have my mother on medication in the form of a memory patch, which she wears daily. I’ve contacted neurologists who have screened my mom. Most confess to having no certain answers. We could take some more of my mom’s blood, try another pill, or register her for hyperbaric oxygen chamber treatments. We will attempt some of these if time and the need warrants. For now, I’ll just watch and learn from the master. She will tell me everything.
Everything she remembers, that is.