I Moved Home To Take Care Of My Parents With Dementia And It's a Thankless Job

At 60 years old, I live in their basement, acting as caregiver, household manager and (according to them) family inconvenience. Good thing I like dark humor.
Publish date:
July 22, 2015
healthy, mental health, alzheimer's disease, elder care, caretakers, dementia

At 56 years of age, I returned home to care for my parents. Both of them have dementia. I​ lived in ​their ​unfinished basement with spiders and centipedes. That was four years ago.

Now, I have ​less money and fewer prospects.​ My siblings are not interested. My father hates my mother. My mother hates my father. Life is a dark comedy.

When I look back at photos of my father taken just one year ago, I see him staring blankly. Looking off into the distance. Disengaged.

Previously, he was a starched gentleman wearing England’s finest bespoke attire. A dapper and courteous physician, psychiatrist and pilot.

Suddenly, or so it seemed, my father stopped caring about his garb. His perfectly polished Oxford Brogues were scuffed. He could not fold his French linen cuffs. Inserting his silver cufflinks was more puzzling than a killer Sudoku. He stopped wearing shirts with more than 6 buttons, resorting to stained white undershirts.

Despite leaving obvious clues, a trail of breadcrumbs to his brain, no one noticed. Except me. I lived with them. My siblings dropped by the house every few months for a visit lasting an hour. More if it was rush hour. Less if there was a sale in the mall.

Thus, no one thought that my father’s increasingly bizarre behavior was more than an eccentricity. Sitting on the porch in his Fruit of the Loom white boxer shorts. Relieving himself by a Maple tree whilst visiting the family's grave site. Conversations filled with non sequiturs. Sentences which changed tense. Lost credit cards. Erratic mood swings. Missed appointments. One of his patients complained about his repetitive and random questions.

All the while, the family made excuses for him.

“He is tired.”

“His patients are so draining.”

We waved off the bowel incontinence. The bed wetting. His change of diet from strictly meat and potatoes to chocolate cheerios and ice cream.

Until he was admitted to the hospital. They diagnosed the strokes, the damaged white brain matter. So, there it was, on his hospital record. This was unacceptable for Dad and most of the family. After all, if we had maintained the facade of normalcy for 5 or 6 decades, why change?

However, my mother embraced the diagnosis. Finally! Time for revenge. A chance to pay back all the abuses of their marriage. She told everyone. But, no matter how many times she told Dad that he had dementia... he forgot. So, it was a bit of a let-down.

Their nasty, mutual pecking has not gone into remission. In fact, it has escalated. They know each other’s triggers so well. The diagnosis brought new insults for my mother’s arsenal. But, my father does not react to her slights. He does not seem to remember.

Unless he does. Then, when my mother is out of the house, he sits by me and confides. “You know; your mother says I have dementia. I do not accept that diagnosis. These young doctors are not trained they way we were. They don’t know what they are doing.”

My father's instructional TEDTalk is accompanied with hand signals, head shaking, and spittle. And a firm, unshakable belief in his mental facilities. Despite any intrusions from reality.

Dementia runs in the family. My father has an official diagnosis of Alzheimer’s. My mother is an interesting cocktail of narcissism and mixed dementia.

This combination provides her with the attention span of a toddler and the empathy of an earthworm. She refuses to seek help because she believes the problem is stress. The source of stress? My father.

Together, they are a heady mixture. At 60 years old, I live in their basement, acting as caregiver, household manager and (according to them) family inconvenience.

When I go out, even to the corner, I tell my parents: where, with whom, and for how long. And I take my phone. My parents are very concerned about me.

One block from home is an upscale grocery store filled with all the middle class people you would ever want to see. Most of them over 80 using canes and walkers. But, my parents are concerned that there is evil out there. They don’t know the source or when The Apocalypse is coming. But, they are pretty sure they can hear the sound of horses' hooves.

Therefore, everything, even a stroll to the corner is fraught with anxiety. “I'm going out now,” I call out when I leave.

“I'm back,” when I return.

Then, I am peppered with questions.

What took so long? What did you buy? Where did you buy it?

Sometimes, I run into a friend at the grocery store. We might stop and chat over the radishes. This will require a phone call to update my parents on my location. "I am at the corner. I will be home in 2 or 3 minutes.”

This is odd. And kind of confusing. For over 50 years, this independent couple hardly knew my name. But, now they check on my every move. Not just outside of the home. They go through my mail and papers on my desk. This is done in a very obvious way. Not subtly.

If I come home with a bag and leave it unattended, my mother will open it and look inside. A new bra wrapped in tissue. No matter. Pull it out and examine it. Look at the size. Look at the cost. And don't forget to remark on both.

Their level of anxiety is such that my parents are concerned if I am not in the house all day and all night. And my whereabouts within the house are known. This does not mean that the front door stays locked. It does not.

The reason for this is that neither of them can determine how the front door latch works. They will lock and unlock the front door several times before deciding it is safe to leave. Then, off they go, down the front steps. Leaving the door ajar.

They both do this. They blame each other.

You might assume that this level of high alert would mean that we know who has a key to the house. But we do not. Keys are given out freely. Most peculiarly, extra house keys are hung on hooks throughout the house. Anyone coming in the house can see them. Grocery deliveries, letter carriers, repairmen. You would think that this would scare the two people who are most concerned about security. But it does not.

A few weeks ago, I suggested to my father that we change the locks, if only to ensure a reduced likelihood of an unwanted visitor. He looked at me with all of his shrunken, stooped and scrawny might. He said, "They had better look out, or they will have to deal with me.” An interesting point of view, since he loses his balance walking across a carpet.

My mother finds the slope on the sidewalk to be a hazard requiring Cirque du Soleil dexterity.

So they dwell in the space between oblivious and panic. Between a tenement and the moon. Through the door, beyond the mirror and into the land of the Mad Hatter. And here I am, through it all, often listening to their discussions on how I stack up in comparison with the other family members.

Without fail, I come up short.