State Sen. Jo Comerford, D-Northampton, invited me to testify Oct. 12 on legislation she filed to allow spouses to be paid caregivers for the elderly and disabled in the Medicaid program. In Massachusetts, you can hire any friend or relative to be your personal care attendant except your spouse — who knows you best.
I wrote the first version of this “spouse as caregiver” bill in 2013, and have lobbied for its passage ever since. The Senate passed the bill twice, but it died in the House. Under a Medicaid state law that I wrote 15 years ago, elders and individuals with disabilities have the right to be cared for in the “least restrictive setting appropriate to their needs.” Yet a worker shortage has caused waiting lists for care at home.
A 2012 study published in the Gerontologist found “there were no financial disadvantages, and some advantages, to Medicaid in terms of lower average expenditures and fewer nursing home admissions when using spouses, parents, and other relatives as paid providers.”
In my testimony I submitted the story of Joyce Galloway, whom I met eight years ago. She was 73 years old, and grew up on Staten Island, where she met her future husband, William “Dicey” Galloway, who was performing in a singing group called the Harptones. Their song, “Life Is But A Dream,” was on the charts.
“I moved to Quincy in 1967,” she told me. “Dicey and I were married in New Bedford. He’s a Korean War veteran. He had epilepsy and asthma. He could care for himself but I had to be on the alert for his seizures, which were absolutely terrible. Dicey worked at the time as a bagger at Shaw’s supermarket.
“In November of 2010, Dicey developed multiple myeloma and he was put on chemo. I had to take Dicey to the VA hospital in Jamaica Plain. By 2012, at the age of 78, Dicey developed kidney failure, and started dialysis three times a week. He’s 81 now. He’s had two episodes of extreme seizures.
“It was around this time in July of 2012 that I first heard of the VA program called Comprehensive Assistance for Family Caregivers, which allowed me to be paid to care for Dicey. We waited for about 15 months to get into the program. Dicey’s personality changed all because of his kidney failure. The hospital took him off dialysis, and sent him to a nursing home to die. But in February 2013, he came home, and this is when he really needed my caregiving help.
“In October of 2013 we got into the VA program. I helped Dicey get dressed. I bathed the areas he couldn’t reach. I helped him with the 32 pills a day he had to take. I cooked all the meals. I did all the shopping, made all the appointments. He was dealing with asthma, severe anemia, COPD, gout, glaucoma, pulmonary embolism, and osteoarthritis. On some days, Dicey needed a wheelchair. He was approved for 17.5 hours per week of care.
“The most intense thing I did was being alert and watching him, because he fell a lot. He had a seizure that lasted 13 days. They had to intubate him in the hospital. He went to rehab and came home. He had to learn to walk all over again.
“I was paid $20 an hour. Taxes were taken out of it. It’s around $12,423 net per year. Allowing a spouse to be the caregiver makes much more sense than having a stranger do it. I was doing elder care in people’s homes for a few years. A lot of my clients were very nice but there were many who resented a stranger coming in.
“Dicey wouldn’t like it — having a stranger come in. He just didn’t like the idea of outside people coming in. I don’t have the slightest idea of what we would do if I couldn’t be his caregiver. This program is really a godsend for us both.”
The VA allows spousal caregivers, and 26 other states also allow spouses to be paid caregivers. For people like Joyce Galloway, life has not been a dream. She took care of her spouse in sickness and in health, mostly in sickness. If Dicey had gone into a nursing facility, his Medicaid bill would have cost taxpayers nine times more per year than Joyce’s caregiving.
Call the General Court switchboard at 617-722-2000 and urge your lawmakers to support the “spouse as caregiver” bills, S.67 and H.216.
Al Norman of Greenfield worked in the elderly home care field on Beacon Hill for more than three decades.