The Network of Complicity

…and other signs we missed

They say the intelligent and the educated fare better in dementia, perhaps progressing more slowly or lingering longer in the early stages. I believe my father had early onset, knew it and successfully hid it from all of us for decades.

It’s not that my sisters and I didn’t know something was up. But we mistook what we saw for something else. To some degree we did this willingly, but certainly out of ignorance. That Dad appeared functional, if quirky, validated our choice for denial. He managed, well into the middles stages of Alzheimer’s, with the assistance of what I call his “network of complicity”.

After he lost the ability to set an alarm clock, my father enlisted personnel in his apartment building to provide him wake-up calls. Eventually he couldn’t find the phone anymore and instead they knocked, to make sure Dad was awake to prepare for crucial events – a dentist appointment, lunch with a daughter, or in time to hand deliver his income tax filings to the main post office in downtown Baltimore before midnight on tax day.

My father didn’t want to let the building maintenance people in his apartment because he believed they were stealing his wallet. So when his toilet broke, he began using the one at the micro market on the ground floor of the apartment building across the street from his. Those restrooms were only for patrons, but the clerk long ago stopped making my father buy something in order to get the men’s room key.

Dad had the presence of mind to stop cooking when he found out, I think. He quit preparing his food and eventually even simple sandwich stacks. So there were frequent, even daily, trips to the fresh grocers’ nearby to buy the same things over and over – sliced turkey on rye, breakfast cereal and rice milk (whether he was low or not), and as much Perrier as he could carry since many days he arrived on foot, having misplaced his wallet and driver’s license yet again. The staff at both stores new him and his “usuals”. They also called EMS services several times for him when Dad would faint due to dehydration or low blood sugar. And he could always get EMS to agree not to call us.

Even the clerks and officers at his bank were part of his network. They withdrew cash from his account on request in spite of the fact that he could not produce an ATM care, photo ID, check made to cash or even his own bank account number. Of course, he had banked there for years and they had witnessed the changes dementia was causing over a long relationship. His identity was never in question. But they were part of the cover-up, not possible without the complicit.

After Dad fell, the hospital acquiesced to his insistence that no family members be contacted following his admission. He said we were busy and he didn’t want to take us from our work and families to come to his aid. The truth was that he didn’t want us to know. He believed that our knowing would destroy his power, his control, and his independence.

On the third day since any of the staff had seen or heard from Dad the manager of his apartment building called my older sister to let her know this. Only with this ultimate act did my sisters and I understand just how involved she and her staff had become in helping my father’s world keep spinning, and his charade along with it.

Dad was filled with strong doses of pride and shame and adamant that he did not need our help. This series of alliances enabled him to feel independent for a long time. I don’t fault them for it. We too were a part of that network – complicit in a different way – in our denial.  He casually dropped these stories for us with an air of temporary fixedness. But they weren’t temporary fixes.

There were other signs we missed. Deciding what is normal and not normal is so tricky when it comes to aging.

A high school friend of mine, one who knew my father well in adulthood, once referred to my father as eccentric. At last, I had a way to frame Dad’s obsessions, compulsions and embarrassing, annoying and frustrating behaviors. It gave me an explanation – a way to relax into the new reality that was changing so slowly, so nearly imperceptibly. But it also gave me an excuse.

The twelve pairs of identical tennis shoes seemed OCD. He explained he had a hard time finding a tennis shoe he really liked and when he found this particular model, he wanted to make sure he had enough in case they discontinued it or went out of business.

He binge-watched the OJ Simpson trial before binge-watching was a thing. He routinely stayed up all night to pack for a 3-day weekend at a school reunion or a relative’s wedding, only to arrive with deep purple circles beneath his eyes.

This eccentricity was the hallmark of Dad’s fronto-temporal decline. To self-monitor, to control impulses, to use sound judgement – these cognitive skills had been impaired and it created changes in his thinking, personality and behavior. The fronto-temporal lobe is where executive function takes place. In addition to the functions above, this part of the brain also enables us to analyze information, weigh options, make decisions, execute plans based on those decisions, analyze results and rinse, repeat.

He used inappropriate language, for either the company or setting or both. He made lewd comments, told off color jokes, wore a Mohawk metal head costume to a non-costume party. He once spent $600 on one dollar tickets to Poland’s state lottery as a birthday present for someone he was dating.  He was losing his grounding in reality. He could not make good decisions or keep himself in check. It looked like mid-life crisis for a while. That’s what we thought.

Dad had always been an eloquent raconteur, a master of timing in humor and a beneficiary of The King’s English. He also had a uniquely high empathy quotient (interestingly also the domain of the front-temporal lobe). Even though his dementia might cause him to miss parts of our meaning, he was always interested and connected in conversation and was careful to get clarification and understand. He was nimble-footed in his expansive vocabulary, well-worn even in the far corners, for a long time.

My father drove remarkably well too, for an impossibly long period of time, considering. He dressed really nattily. He could summon his “on” self really well when out in the public eye. So it was easy to buy into the eccentric narrative and pass off all the surprising, annoying, embarrassing and, we often thought, manipulative behavior as just that – nothing more. It was just “crazy” Dad.

If only we had known differently. If only we’d understood what was really going on in his brain. I know I would have sought out his company more. I would have found more patience for his quirks. I might have moved closer to home. We might have been able to seek diagnosis and get prescriptions for drugs to ease his symptoms for a while (these drugs work best the earlier they are administered). We might have been able to engage him in healthy conversation about his preferences for activities, relationships and care throughout dementia’s phases. We might have been able to help protect his quality of life and general well-being for many year prior to his fall, which broke his knee and wrist, and finally our epic run at denial and ignorance.

If only we’d known more about dementia, we would have been stronger with Dad when it was clear we were witnessing more than eccentricity or the senility he claimed was running over top of him. When I speak on behalf of the Alzheimer’s Association about the 10 Warning Signs, I encourage the audience to face, not fear, the signs they notice.

Don’t confuse a diagnosis with a curse. Dementia is the curse. But the diagnosis is a gift. Early detection is your best option for a number of reasons. I wish we’d understood this.

If you want to learn more about the 10 Warning Signs click here to view register for one of our webinar sessions on this topic.

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