Gay man honored at elder caregivers event

Lawrence Johnson thought the 30 years he spent teaching English to students at Needham High School was hard work. But he learned otherwise when his partner of 37 years, Alexandre Rheume, began to suffer the ravages of Parkinson's disease, including dementia. In 2001, Johnson retired from his job so that he could provide his partner with the around-the-clock care he required. "Being a caregiver is by far the hardest thing I've ever done in my life," Johnson told a crowd of elder service providers, family caregivers and lawmakers at the State House Nov. 15. "And there is no preparation. It's all on-the-job experience."

Johnson, who lives in Sharon, made his remarks as he received a Governor's Citation from Secretary of Elder Affairs Mike Festa in recognition of his efforts as a family caregiver. Johnson was among 17 caregivers honored at the ceremony. In an unfortunate testament to the all-consuming nature of caring for an aging or seriously ill loved one at home, many of the caregivers were unable to attend the ceremony to accept their awards in person. Lt. Gov. Tim Murray joined the ceremony to proclaim November Family Caregivers Month in Massachusetts.

Johnson, who also received a citation commending his work from the state House of Representatives, publicly thanked HESSCO Elder Services, the local agency that assisted him in caring for Rheume at home. He specifically singled out HESSCO Family Caregiver Specialist Sheryl Leary, "for helping me get through. There were days when I didn't think I couldn't get through," said Johnson. "So thank you."

But Johnson is now facing another hurdle as he seeks to ensure that Rheume is properly cared for. In June, Rheume was placed in Highgate Manor, a Dedham nursing home, following what Johnson described as a bad accident at their home. But because he is not recognized as a spouse by MassHealth, the agency is seizing all of the couple's jointly held assets to pay for Rheume's care. "Any financial things that have both of our names in, they declare that all his," said Rheume. "So I'm being wiped out. The only thing I have is the house left, and they want to take everything else that has two names on it." About seven years ago, said Johnson, he and Rheume saw a lawyer and set up a trust that now prevents the house from being taken.

Johnson, 63, and Rheume, 85, are not married. By the time the option became available in 2004, Johnson told Bay Windows after the ceremony, Rheume's mental deterioration prevented it. "He just didn't want to do something like that," added Johnson.

It wouldn't have mattered anyway. MassHealth is a federally funded program and under the federal Defense of Marriage Act, the health plan does not recognize same-sex relationships for eligibility purposes. That means that the couple's joint assets - things like bank accounts, CDs, stocks, mutual funds, even the couple's home - are considered fair game to pay for Rheume's care. By contrast, the heterosexual spouse of a nursing home resident can automatically keep more than $100,000 in joint assets as well as their home. Additionally, depending on need and the cost of home maintenance, an at-home spouse is also allowed to keep a portion of the nursing home resident's monthly income.

"In all honesty I would give back every single certificate if Alexandre and I could get approval from MassHealth," Johnson said in his remarks to the crowd, prompting a round of applause. "That refusal to acknowledge 37 years together boggles my imagination. And just on a monetary basis, the thousands of dollars I have saved the state by being Alexandre's primary caregiver, being there until I couldn't take care of him any longer." He has found some measure of comfort, however, in the treatment he and Rheume have received by the staff at Highgate Manor. "I appreciate the care that they're giving him and also their understanding of our situation, the respect and love that they give to Alexandre and to me," said Johnson. "And I just want to say thank you."

Johnson later told Bay Windows that caring for Rheume full time "wasn't too bad in the beginning." But as his partner grew weaker and his dementia worsened, caring for Rheume "became more and more consuming." Rheume had bouts of "sundowning" or the periods of agitation and confusion - sometimes extreme - in late afternoon and early evening that are common among people suffering from memory diseases.

"Nights were very bad," said Johnson. "So I wasn't getting any sleep. By the time he went into the nursing home I was pretty much stretched [to my limit]."

Johnson also said he is currently going through the MassHealth appeals process in an effort to get more fair treatment for himself and Rheume. He said he has retained a lawyer and anticipates getting a hearing date for his case soon.

Festa, a former state legislator who was active in the legislative fight for marriage equality, lauded Johnson for raising the issue in his remarks. "We think we've made progress and in some respects obviously we have in acknowledging important and caring relationships. But that struggle does continue," he told the crowd. "Certainly, federally it does. And whatever I as a secretary can do to support the good things that you have done yourself personally and those who share your challenge is something I consider very high priority. So thank you for calling attention to it in a personal way."

Though it may be of no consequence to Johnson, other marriage equality advocates besides Festa have recognized the needs of married gay seniors who may find themselves in Johnson's shoes. Openly gay state Rep. Liz Malia, for instance, has filed the MassHealth Equality Bill, which would use state funds to pay the total MassHealth costs for same-sex couples in the absence of federal recognition of their relationships.