“Mommy had. A little baby. There he is. Fast asleep. He’s just. A little plaything. Why not. Wake him up?” Chris Frantz / David Byrne / Jerry Harrison / Tina Weymouth
Being a caregiver is a nonstop twenty-four hour, seven days a week task. It takes both a physical and mental burden.
My wife Sylvia is ill with dementia. There are stages of the illness and we are getting to the latter end. Sylvia is currently bedridden and can only walk with my assistance. Still, this is a relief compared to what I went through.
At first, Sylvia became forgetful. At that time we didn’t suspect dementia. When I was hospitalized, apparently her symptoms became apparent, but I wasn’t around to witness them. Next came the hiding stage. This was very frustrating because she would hide things and then forget where she hid them. Worst of all she would hide her pocketbook. This was extremely frustrating. As a remedy, I would put her cell phone in her pocketbook. Whenever she misplaced her pocketbook I would call the phone and hunt it down.
Without a doubt, the worst stage was when Sylvia would run away. I couldn’t understand the illness and took a personal affront. Whenever Sylvia ran away she would call me to pick her up. It got to the point where she couldn’t read street signs. I would drive all around town looking for her. Some of the merchants on the main street befriended Sylvia and would call me when they saw her. The police got involved. Initially, they were a problem, but when they came to know the situation they were very helpful.
It is an awful feeling waking up in the morning and knowing that your wife has run off to wander around. It was especially difficult when she ran off without taking her purse and cell phone. You think the worst, and wonder if something bad would happen to her. By the grace of God, we made it through these tumultuous times. In the end, it was so bad that Sylvia couldn’t even use her cell phone.
There was a point where Sylvia wanted to always stay home. This worked out well until her body started to deform. Because her back was getting crooked, Sylvia would not have good balance. She would constantly be walking around the apartment. She fell a good number of times. Fortune smiled upon me. Syliva got swollen feet and bed sores at the same time. To remedy the bed sores they gave her a hospital bed with a special air mattress. Conveniently this bed had rails on it so Sylvia couldn’t get up on her own. This solved the problem.
Now Sylvia is dependent on me for everything. I have to shower her, feed her, dress her and do all the cooking and chores. Somehow, someway I have to find a way to make a living as well. I have vigorously pursued a career in writing. Though I have had nominal success I am still far away from the goal of the art supporting me financially. Still, I really don’t have many options. I still look in the want ads for a great job. The problem is if I go to work I would have to pay somebody to watch Sylvia. So the pay has to be very good. I have a lot of skills, but my skills really don’t translate into the workforce.
I can’t get any government help from Sylvia as she doesn’t qualify for Medicaid. If she was on Medicaid she could get a full-time home health aide or even go into a nursing home. But to qualify for Medicaid you have to have less than three thousand dollars of assets. So basically you have to be destitute. So somebody coming from a foreign country with no many, can get care, but Sylvia who worked many years cannot.
Of course, the job of the caregiver is around the clock. I never know when I have to change a diaper and wash Sylvia. Also simply going out, like to church, is a precarious thing as Sylvia is incontinent.
All in all, it is a labor of love. I made vows when I got married and I intend to keep them, even if it costs me everything. As a writer I can appreciate the drama, it makes for a good story. If Sylvia never got sick I never would have had the courage to quit my job and pursue my dream of writing. I can only pray for the fairy tale ending. As for Sylvia, I have to feed her her oatmeal and blueberries now.
Please check out my poetry book “Polishing the Fragments”. It is my latest poetry book where I look into the world of my struggle with life and touch on both my mental illness and Sylvia’s dementia. https://www.amazon.com/Polishing-Fragments-John-Kaniecki/dp/1947381032/ref=asap_bc?ie=UTF8
Photos by fairfaxcounty,