Slipping through my fingers

About a year ago my mom stopped driving. At 82 this seemed pretty reasonable – she’s never been a great driver to begin with, but we all knew that this “loss” along with her recent retirement would be quite the blow. What I didn’t realize was how much her ability to drive was actually masking her decline into dementia. Her car was a fortress of sorts – if she found herself lost, she could just drive and drive until something felt familiar. If she became confused, she could simply sit in her car and listen to the radio until the confusion passed … now with this armor stripped away, she lay bare – vulnerable for the world to discover her secret.

Uber was impossible for her to manage. She would berate the drivers for showing up “late” or on the wrong side of the street. Then her ability to even use the app slipped away. She would call from her home and request rides – and this worked well for her, but once she was out she couldn’t navigate a way home. This is when the tracking began … endlessly checking my phone to see at any given time where she was … then miraculously “showing up” to pick her up – as if it were a total coincidence. I would check my phone constantly – significantly more than my daughter’s teenage years – always worried about her whereabouts, wondering when I would receive her call.

My mom was the Senior Peer Counselor at the Wise and Healthy Center for Healthy Aging for over 20 years. She was immersed in the world of aging – dealing with seniors who were alone, bereft, filled with regret and often very resentful. She knew all the signs, all the necessary precautions, and the myriad tools at one’s disposal to provide support, planning and guidance. This was her “mettier,” as it were, her expertise … My mom absolutely knew what was happening to her, she could have availed herself to an entire organization who would want nothing more than to support her. Yet with all her knowledge, she hid it and denied it … walking a tightrope woven with strings of denial, intransigence and fear.

Nine months later my mom is living at a facility with a caregiver 12 hours a day – 7 days a week. She is confused most of the time – this once brilliant woman now reduced to relying upon a digital clock which tells her the day of the week, the date and the time as her tether to reality. The caregivers came aboard after she began “looking for someone who looks nice” as a mode of transportation – just walking up to strangers and asking for a ride. She resents her caregivers, is humiliated by the very idea of them and has become hostile towards them.

My monitoring of her whereabouts has been replaced by almost nightly phonecalls either from my mom or her caregiver asking me to call because my mom “wants to go home.” This is what is often called “sundowning” and my mom becomes highly agitated, paranoid and upset. Wanting to “go home,” even though she is in her apartment. The desire to “go home” I have read, has less to do with location and is more about a desire to return to “normal” or feeling safe and whole. There is little anyone can say or do during these episodes as she is completely irrational and often conspiratorial … accusing me of “being in on the game” or “dumping her” or whatever words she can find as a vessel for her fear and angst. DARE … “DON’T REASON ARGUE or EXPLAIN” I remind myself with each confrontation. I try and distract her, change the subject … do anything to get her out of this loop. It is so terribly sad yet also incredibly draining and frustrating.

The cruelest cut of all (I know now to say “thus far”) is a new development. It makes sense … it makes sense that my mom would reach into her long-term memory for her strongest memory for context. In my case, those memories are those of a 15-year-old filled with rage and rebellion. A time where my own self-destruction was a form of self-preservation, a time I don’t enjoy revisiting. Yet, this is the “Janie” my mom has chosen to remember. She now throws barbs my way in almost every conversation … being able to trust me, my judgment and references past history as if it were yesterday. It took years for my mom and I to repair our relationship and now dementia has stolen that as well. It is so painful to see her watch me warily from the corner of her eye as I move around her apartment. So utterly crushing to her say “Janie, I don’t think most parents would have ever been able to forgive you for what you did as a child.”

Yes, my rational brain says “this is the disease – you can’t take it personally.” But I can’t help but wonder if this is the kind of thing, akin to a person who drinks and then the truth pours out. Is the disease simply releasing her from self-censorship? It must be in there somewhere … Then I pull myself together, push away those thoughts and try and focus on all the good in my own life – how fortunate I am, what a gift my husband and kids are … until the phone rings again.