The VA allows spousal caregivers, and 26 other states also allow spouses to be paid caregivers.

By Al Norman

BOSTON — On Oct. 12, my Massachusetts State Senator invited me to testify on legislation she filed to allow spouses to be paid caregivers for the elderly and disabled in the Medicaid program.

fIn 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 Massachusetts 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, who I met eight years ago. She was 73 years old, and grew up in 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. She and Dicey, a Korean War veteran, were married in New Bedford. He had epilepsy and asthma. Joyce said Dicey could care for himself — but she had to be on the alert for his seizures, which she described as being “absolutely terrible.”  Dicey worked at the time as a bagger at Shaw’s supermarket.

In November of 2010, Dicey developed multiple myeloma and was put on chemo. Joyce said, “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,” said Joyce.

“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, Joyce said.

“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,” said Joyce.

Joyce said the most “intense” thing she 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, Joyce said.

“I was paid $20 an hour. Taxes were taken out of it. It’s around $12,423 net per year,” Joyce said.

“Allowing a spouse to be the caregiver makes much more sense than having a stranger do it. I was doing eldercare 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,” said Joyce.

“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,” Joyce said.

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.

To find out if your state allows spouses to be paid caregivers, call your state’s Medicaid office. If your state prohibits spouses as paid caregivers, call your State Rep & Senator and ask them to file a bill to change that.

Al Norman worked in the elderly home care field in Massachusetts for more than three decades, and his op-ed columns in the 50+ Life have run almost as long.