In June 2009, I saw that my husband, Howard, already a few years into his battle with Parkinson’s disease, had slipped off one plateau and was falling to another. I couldn’t always be sure: For the most part, his drops in functioning were nearly unnoticeable. But now Howard, 73, could no longer drive his van or walk without a walker.
Every step in his decline made it harder for me to take care of him. Yet the slow downhill journey had lulled me into accepting the status quo, so I put off getting help at home. Although our long-term care insurance covered home health aides — that’s part of what makes long-term care insurance so vital — I was somehow reluctant to take full advantage of it. I thought I could manage alone.
Of course, to me Howard Van Hyning wasn’t just a patient afflicted with the debilitating disease we had come to know as PD. For decades he was the New York City Opera’s principal percussionist. I met him in 1982 by leaning over the orchestra pit at the New York State Theater and nearly falling into his lap as he smiled up at me, his blue eyes twinkling. Tall, broad-shouldered, bald and dressed in a tuxedo, he was an impressive figure and, as I would soon learn, quite the man about town. Yet inside he was still the Florida boy whose music teacher had seen in him the kind of talent that would lead to a major career.
Now, even though that spirit remained, the steady advance of Parkinson’s disease meant he needed an increasing amount of care, and by November 2009 I could no longer go solo. After a fairly painless vetting by our long-term care insurer, I enlisted the help of a home health aide: Sesay, a cheerful young Ghanaian who tended to Howard’s bathing, dressing and meals for four hours a day, four days a week. This was well below the eight-hour/seven-day schedule for which we were covered, and which I stubbornly resisted. Eventually I realized that I needed more help, but still I held back: In June 2012, I requested a half-day Saturday aide.
On his first Saturday, the aide arrived in the midst of a crisis. I couldn’t rouse Howard. The aide and I tried unsuccessfully to get my husband into the car so I could drive him to the emergency room. I then ran next door and asked our neighbor Jerry to help. Jerry, who is 6 feet 5 inches, managed to fold 6-foot-2 Howard into the front passenger seat.
I raced to the hospital in five minutes, and by the time we arrived Howard was coming around. In the ER, he talked and laughed. The doctor explained that a sudden drop in blood pressure, common to Parkinson’s patients, had caused the problem. None of our regular doctors had mentioned this.
The ER doctor also noted that Howard had a foot infection. As a precaution, he admitted him for intravenous antibiotics. What was supposed to be an overnight stay in the hospital morphed into a four-month nightmare of nursing home and assisted living facilities. These places had an enforced bedtime of 8 p.m. — an absurd hour for a musician whose typical workday had started with an 8 p.m. downbeat.
To understand how toxic these environments proved to be for my husband, you need to know a little more about Howard. A man of passion and imagination, he was not only a world-class musician but also a collector of vintage percussion instruments, which he rented to orchestras around the globe.
One night after Madame Butterfly he came home carrying a burlap bag. He opened it to reveal a set of 13 chromatically tuned gongs that Puccini had commisioned for the opening of “Turandot.” Through schmoozing, pleading and deft timing, Howard had bought the gongs from an Italian stage manager, who in turn had scored them from La Scala in Milan. What a treasure! Luciano Pavarotti thought so, too. Their exquisite sound so moved him that he signed one of the gongs after Howard accompanied him during an encore at Carnegie Hall.
Now Howard was in soulless facilities where his medication wasn’t given on time, if at all. Deprived of intellectual stimulation, he seemed to be fading away. When I visited him at the assisted living place one evening, I found Howard tied to a chair with silk scarves. Neither the aides nor the executive director would explain it. Howard just looked at me and said, “Do you think I could come home?”
Though terrified that I would no longer be able to take care of him, I immediately agreed. My next move was to arrange — finally — for full-time home care. Our agency made that easy. By adding only $20 to the $150 a day paid by the insurer, I was able to line up 24/7 care. A breakthrough!
Next I had to figure out how to occupy Howard during the day. You’d think that as a clinical psychologist and journalist with 25 years’ experience, I’d have a clue. I didn’t. Perhaps my background worked against me — I was used to institutions with extensive staffs and programs. All I had now was myself, a home health aide and an amorphous community.
In seeking more help, I turned to two women from my church. Both frequented a nearby senior center for its $3 lunch, but they enthused over the center’s other activities as well: parties, dances, sing-alongs, aerobic exercise, swimming, yoga, discussion groups, trips to local historical attractions and computer classes. For a $10 membership fee, Howard was in. Through further networking, I found a weekly PD exercise class, a men’s current events group and a monthly PD support group. Howard was having a ball.
It saddens me that I didn’t do all of this sooner. Howard’s life at home, diminished as it was by Parkinson’s, would have been so much richer if I had discovered the senior center earlier. I still can’t fathom why I struggled alone for five years without getting the home care to which we were entitled. Martyrdom does not become me.
The simple explanation is that our lives had never intersected with the senior center and other organizations that helped Howard at the end. No social worker, insurer, doctor or agency ever pointed me in the right direction. If I had it to do over, I would accept help and start networking from the outset. Even though I eventually found a support network, I regret that I didn’t do it sooner.
But then I remember a certain Friday afternoon at Howard’s old percussion instrument rental business. Although he had sold it to a drummer named Matt, the business was located just two blocks from the senior center, and Howard and his aide went there every day. I happened to be there too on this particular afternoon. I watched Howard and Matt repair a 40-inch Ludwig base drum and tend to a wobbly vibraphone, and the beauty of these simple acts brought tears to my eyes.
Fifteen hours later, Howard was gone. He and I had just finished breakfast. The aide was ready to bathe him. Suddenly, Howard collapsed and died in my arms of cardiac arrest, less than a month after coming home.
Next Avenue Editors Also Recommend:
- A Caregiver’s Guide to Parkinson’s
- 10 Steps to Get Started as a Caregiver
- The ABCs of Long-Term Care Insurance
- 5 Ways to Make Caregiving Tasks Easier
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