By Yvonne Sam
There have been numerous discussions about Alzheimer’s disease, including the toll it takes on the victim(s) and caregivers; and the ravaging effects, in addition to the emotional havoc, it wreaks on those, who are seemingly forced to look on, helplessly.
The disease is non-discriminatory and regardless of your name or fame, or how deep your pockets, it slowly, but methodically, ravages minds. There is no cure.
However, even in the face of all this discussion, one overlooked aspect is how to navigate romance, especially the sexual aspect of it, when one spouse has Alzheimer’s. It is a rarely-deliberated, or discussed, aspect of the world of dementia — the inner machinations of marriages in the shadow of a disease that affects 1 in 8 Canadians, aged 65 and older.
As of June 2018, there were over half a million Canadians living with dementia, plus about 25,000 new cases diagnosed every year. By 2031, that number is expected to rise to 937,000, an increase of 66 percent. alzheimer.ca/en/Home/Get-involved/Advocacy/Latest-info-stats
The progression of Alzheimer’s disease causes the patient to no longer recognize, or remember, his/her partner and may seek closeness and physical intimacy with a new partner.
Open discussion about how couples, affected by the disease, choose to maneuver relationships, outside the marriage, has remained taboo, even among the community of people, who study, treat and advocate for Alzheimer’s patients.
Marriage, in itself, is a complex contract, with each union being as individual as the humans, who inhabit it. When dementia enters the equation, marriages automatically change for both the patient and the caregiver, who must witness the change and decline of a loved one, transforming right before their very eyes.
People adapt to this change in different ways. There are some people, who will feel very comfortable about the person, they are caring for, becoming fond of someone else, or the converse. Basically it is just about survival. There is no road map. Even in the face of chronic illness, sex remains a basic human need.
Not surprisingly, concurrent studies by the American Alzheimer’s Association and National Institute for Health have revealed the frightening impact of this disease on Black Americans. African-Americans are twice as likely to develop Alzheimer’s as whites, and represent only 3 to 5 percent of those enrolled in clinical trials to find a cure.
U.S Supreme Court Justice, Sandra Day O’Connor, who had retired from the high court a year prior, made news in 2007, when her adult son gave an interview that detailed his father, John’s, move to a care facility for Alzheimer’s and his subsequent romantic attachment to another woman.
He also explained that his mother was happy with the arrangement and would visit with her husband, while he sat, holding hands in a porch swing, with his “girlfriend”. www.forbes.com/sites/nextavenue/2019/03/19/sandra-day-oconnor-and-alzheimers-a-personal-story/#732ed6f86091.
In 2018, Justice O’Connor announced her own reckoning with the disease that had afflicted her husband, John J. O’Connor III, a partner in a prestigious law firm in Washington. www.nytimes.com/2018/10/23/us/politics/dementia-sandra-day-supreme-court.html.
The situation highlighted a scenario that is all too familiar within the Alzheimer’s community. It is quite common that the Alzheimer patient, residing in a care facility, might forget that they are married and develop a romantic relationship with someone else. Also not unheard of, are spouses who divorce as Alzheimer’s encroaches, and even ex-spouses, who move back in to become caretakers.
Not surprisingly, concurrent studies by the American Alzheimer’s Association and National Institute for Health have revealed the frightening impact of this disease on Black Americans.
African-Americans are twice as likely to develop Alzheimer’s as whites; represent only 3 to 5 percent of those enrolled in clinical trials to find a cure; and women — especially African-American women — are the fastest growing group developing the disease. www.alz.org/media/documents/alzheimers-facts-and-figures-2019-r.pdf
When Dan Gasby, the husband of former American model, restaurateur and lifestyle guru, B. Smith — who has Alzheimer’s — went public with his relationship with a new woman, who happens to be white, it sparked fallout worthy of a tabloid tell-all: outrage, name-calling and an uncomfortable appearance on “The View.”
Gasby’s admission ignited a virulent, often nasty, and unreasoning backlash within the Black community. theglowup.theroot.com/on-b-smith-husband-dan-gasby-and-the-backlash-over-mo-1832524911.we
Avoid it as we may, we will, eventually, need to confront and answer the question raised by the romance of John O’Connor and Dan Gasby: What are the boundaries of commitment and love, when one partner can no longer remember the other or understand their shared history?
The real reveal was not about Dan Gasby’s new romance, or the fact that his new, white partner spends time at the home he lives in with his wife.
According to Laura Gitlin, Dean of the College of Nursing at Drexel University, in Pennsylvania, and author of, Better Living With Dementia: Implications for Individuals, Families, Communities and Society: “I don’t think we’re even ready to have the discussion this suggests.”
The solution, according to experts, might be to begin conversations about plans and preferences for the future, as soon as possible, after receiving a diagnosis of dementia. Additionally, if the family is comfortable, those discussions can include future relationship boundaries — think of it as a living will for a marriage.
“People have different boundaries,” says Gitlin, “and part of being in any relationship is talking about that and being open about that, while you still can. In the shifting landscape of dementia, struggling to find an answer that fits your family can be challenging. If the family is able to address these issues, then the key is to move forward without judgment.”
When considering the ways, in which relationships might change, according to the author, the most important clue comes from the past. “Understanding what the previous relationship was like, is important here. What did the couple practice before, what are their religious beliefs, what is their moral compass? All of these things are going to affect people’s choices, both in wellness and under these circumstances. So there is not going to be one-size-fits-all and what’s right and what’s wrong. A point that should not be forgotten is that any planning or decision-making should foremost take into account both the needs of the patient and caregiver, particularly since an Alzheimer’s decline can last anywhere from four to twenty or more years.”
It is sincerely hoped that from henceforth, any discussion of care for the caregiver would include and give prime importance to the need for intimate relationship. Sexual relationships are an issue that families want to talk about, but, regrettably, they are not given any type of support.
Alzheimer’s is one of the most cruel disease of our times, and one that kills those afflicted twice: once as they become unmoored from memory, family and the lives they have lived; and again, when they die from this fatal, irreversible disease.
Yvonne Sam, a retired Head Nurse and Secondary School Teacher, is Vice-president of the Guyana Cultural Association of Montreal. A regular columnist for over two decades with the Montreal Community Contact, her insightful and incursive articles on topics ranging from politics, human rights and immigration, to education and parenting have also appeared in the Huffington Post, Montreal Gazette, XPressbogg and Guyanese OnLine. She is also the recipient of the Governor General of Canada Caring Canadian Citizen Award.