A Light in the Dark

I’ve been weighed down for at least twenty months by the stresses in my life: taking care of my husband; writing and teaching and doing my professional job; feeling that I never have a moment to rest; no time for myself.  When the annual fall Northeast Milton Seminar came up, and a couple of close friends were going, I thought maybe I should try.  I needed “respite care” for my husband and a respite for me. 

In order to attend, I arranged for one of our aides to move in for the weekend. I even hired an extra nighttime aide so she could get some sleep. Then Friday morning, September 6th, I got in my car, and off I went. A five and a half or six hour drive—alone. And it was just what I needed.  

But during the trip, just north of Hartford on 91, the traffic suddnely stopped and was backed up as far as the eye could see. The southbound lane had been cleared and firetrucks streamed by with sirens blaring as they headed north, then came ambulances. Slowly I crawled passed one of the worst multi-car accidents I’d ever seen. I don’t know how many cars were smashed, but there were at least two that were totaled. A baby car seat was hanging out the back window of one and I just started crying. It was horrible and I couldn’t stop thinking of that child, or what happened to the mom, or any of the other people involved. So many ambulances! I prayed, please God, at least may that baby and mother be okay.

I was so shaken, but had to pull it together and drive safely. It made me think of how each time I leave our apartment, my husband always says, “be safe.”

Then I thought, what if I have an accident too? What if I’m killed? Who would know? I had bought grave plots for myself and Tony late last winter, but where were those documents?  Please God, I prayed again, let me live so I can get home and find them and tell my son where they are!

So, I finally get to Dartmouth in time for the meeting. It was good to be with these people, especially to attend a pleasant communal dinner Friday night. Everyone was feeling friendly and I was glad I came.  The next day there were papers to review by two young women, one in the morning, one in the afternoon. Our group of about twenty sat around the long table and discussed them (though I noticed the guys tended to give mini-lectures of their own, and I had to fight a bit to get my two cents in). Still, I thought, it’s a great group.

When it was all over, late afternoon, I walked across the street to window-shop—something I never have time to do anymore. And there was a little store called Simon Pearce with the most beautiful lamp in the window! Pale bluish-green sprinkled with gold in irregular patterns, like flowers or constellations. It gleamed; it reflected the light in ways that made it seem like a living thing. I fell in love, but thought, “no way I can afford this, especially when I’m paying thousands and thousands a month for my husband’s care.” I coveted that lamp but ultimately, stayed away from it until the next day before I left, going back to the store for about twenty minutes just to soak it up, fill my heart with it and then drove home.

Well, of course, I just couldn’t get that lamp out of my mind. I’m obsessive about my husband’s care and diet, about work, and . . . about beauty.  Several days passed, and I thought, “What the hell, I spend all this money on his care and there’s nothing to show for it. Maybe I should splurge, bring some more beauty and light into our apartment which is increasingly filled with medical equipment and supplies.”

So I called the store— they just sold that lamp the day before! I went to the internet, only to find the lamp out of stock, indefinitely. Then I found a Simon Pearce in Greenwich, Connecticut, about thirty-five miles away, called, and a woman named Sandy went to work.  In seven hours, an employee named Kristy called me from Vermont.  They have three of these lamps, “celestial crystaline, in jade.”  Don’t you just love the name?  Heavenly, crystal, jade, the color of happiness and good fortune. All the things I needed, I thought. She sent me three pictures, I pick out the one I like best, paid the small fortune, and she promised to ship it to me right away.  I’m ecstatic, if just for a brief moment, having found solace knowing that my lamp was coming!

Two days later, the concierge calls from downstairs. “You have a large heavy package.” Great! It’s the lamp! Even more beautiful than I imagined. I carefully took it out and put it on the big carved oriental rosewood table of my father’s.  The whole thing looks gorgeous. But as I try to put the shade on, I notice there’s something wrong with the light socket—it’s loose and the whole thing wobbles.  I call the Vermont store. “Oh you just need to tighten it.” Okay, but how? Well, there’s a little screw. No screwdriver I have will fit, so I run down to the hardware store, get a smaller one and the guy tells me it’s really easy, just thread the socket on the metal post that comes up out of the lamp. Well, it doesn’t work. In fact, it’s falling over even worse. I’m getting frantic. My daily life feels like a rollercoaster.

I call the Vermont store again, ask for Kristy, but am told there are three Kristy’s! How can there by three Kristy’s in one little store? I’m told to haul this big lamp to the Greenwich store; they will send it to the special lamp repair guy in Vermont, and probably six weeks later I’ll have my lamp.  God willing.

And all l wanted was a little light in the dark.

Peter Costanzo
When Aides Are Part of Your Life, Part One: The Challenges

How many of us think that at some point in time we are going to need care or be a caregiver?  I think it’s something we ignore, or try not to think about, like death, though I’ve always been prone to such anxiety, or as one friend says, “catastrophizing.” Still, I’d never thought about the challenges that come with having aides in your home for hours at a time.

But our lives changed on February 4, 2018, when at the end of the Super Bowl my husband Tony, with Parkinsonism, had an “event” that landed him in the hospital. At first I thought he was just excited by the game, but that wasn’t it. The doctors couldn’t figure it out and finally decided it was likely a mini-stroke (which leaves no visible mark in the brain). After lying flat on his back for a few days, he was sent to rehab to regain the ability to walk, which he lost while hospitalized. When discharged from the facility more than three weeks later, he still wasn’t back to normal and we needed a home health care aide so I could continue working at my job.

At first it was for four hours because he could be on his own until I got home. And I could occasionally leave for a couple of hours on the weekends, but couldn’t be away too long. But then came more “events.” As his neurological disease has progressed over 20 months, his needs (and thus mine) have continually increased. Now that he can’t walk, he needs someone to care for him 24 hours. We don’t have aides during all that time, so I have to make up the difference myself, which is an increasingly difficult and dangerous task. I daily worry that one, or both of us, will become seriously injured whenever I try to move him.  And then where would we be? I’m terrified of becoming disabled myself as a result.

So many difficult adjustments come with needing aides in your life. My parents needed help as they got older, but there was nothing available back then, except what the nearest family member could provide. We have resources they didn’t, thank God, but I can’t say it’s easy.

            First: It is hard for the person who needs care to accept what he can’t do--and it’s also hard for me, as I’m also always a “care-giver.” Sometimes I push him, telling him to do something that he simply can’t. Maybe I’m in denial, reluctant to accept a difficult reality.  “Move your feet!,” or “Stand up straight,” I urge. I want to shout, “just do it!”  I’m trying to make him move since and I don’t always like myself during these moments.  My fits of annoyance are followed by sadness and I feel like my heart is breaking. Tony has his own flashes of denial.  He will say while sitting in his wheelchair, “Well, I will make my own breakfast,” or “I can walk to the bathroom.”  I get so tired of trying to make him face a reality that he chooses to forget, as if in his mind he’s still his old self. What should I say? Sometimes, I just don’t know how to calm the situation, rather than escalate it. Whatever I do feels wrong.

            Second: Finding good aides is hard.  Most people use a licensed agency that vets them. Some are good, some not so much. Some leave after only one day; maybe they don’t like the job or find it too demanding, especially with all the heavy lifting. Some take initiative, others need prodding. Perhaps it’s because home health aides don’t get paid a lot, between what the agency and the government takes. In fact, I honestly don’t know how they survive financially. On one of our trips to the emergency room, one of the nursing assistants there told me, “find someone to work on the side and pay privately. They’ll make more and give better care.”  But the downside is you can’t deduct those expenses on your income taxes.

Third: It’s so expensive, especially as we need more and more hours of the day covered. And it’s clear our needs will only increase. How will we be able to afford it? On the other hand, compared to our poorly paid aides, we are quite comfortable.  Still, I can’t deduct our expenses since the IRS has stringent requirements and a high threshold for the percentage of your income that you must exceed.  So, quickly our money goes, month by month and I wonder how long we can go on this way.

            Fourth: The most difficult thing, however, is lack of privacy or solitude for my husband. He can’t even be alone for too long in the bathroom! I, on the other hand, can always leave for a few hours to work or a short break, whereas he’s confined. When he sits at the dining room table in his wheel chair (locked so he won’t slide back), he gets annoyed the moment he’s through. “I want to be freed,” he says.  Our apartment increasingly feels like a prison to him no matter how lovely the views of the Hudson river. Over the fifteen years we’ve lived here, I’ve tried to create an oasis out of our apartment, filling it with color, a crystal chandelier and hanging crystals in the window to catch and spread the light. But between being unable to go anywhere and never being alone, he feels trapped.

It is hard for anyone to get used to having another person in your living space who’s always with you but my husband has always been a very private person and an introvert. There have been many times in our long marriage where he’d say, half-joking, “I want to be alone,” to which he’d go into his room to read or watch TV. In the early days of our life with aides, when he could still use a walker, he hated when they followed him around.  Wouldn’t you know, the one time he insisted on going into the bedroom himself, he fell, suffered a serious head trauma, and ended up in the hospital. He never has regained his ability to walk, though he keeps up the (delusional) hope that if he works hard enough he’ll walk again.

            Month by month, as he loses his abilities, he loses his privacy. And we lose privacy as a couple. I love the few (and diminishing) hours when we’re finally alone, sitting quietly and reading (though those are getting rarer, as it’s harder for him to read), a taste of a life we’ve largely lost, one I realize now I didn’t truly appreciate at the time.

            So, how I balance his need for independence with the need for him to be safe? Yes, dignity is the thing, but how do you keep the person being cared for from feeling like a child and infantilized, when over time they may become more like the infant who can’t walk, toilet or feed themselves, or even in some cases, talk? It breaks my heart, daily, but it also makes me pray that I won’t ever have to go through this myself. Nothing about this life is simple.

Peter Costanzo