Married to Alzheimer’s
by Women's Brain Health Initiative:
Spouses of those with dementia face drastically altered marriages.When Dr. David Kirkpatrick and his wife, Clair, were told by a neurologist that she had Alzheimer’s disease, she insisted that they watch a film together. It was Away from Her, a 2006 independent drama starring Julie Christie and Gordon Pinsent, which recounts the journey of a husband and wife weathering the onslaught of Alzheimer’s disease.
The film includes a heartbreaking storyline in which Christie’s character develops a relationship with a fellow resident at a care facility as her disease progresses, further testing the love of their respective spouses.
Dr. Kirkpatrick recalls how he and Clair laughed and cried as they watched the fictional narrative unfold. Neither of them knew whether the film would presage their experience, even though they both understood the dreadful implications of the diagnosis. He was trained as a geriatric psychiatrist. She was a successful clinical psychologist.
But professional credentials were no balm for the reality of first-hand experience.“I wasn’t really ready for it,” said Dr. Kirkpatrick in a telephone interview with Mind Over Matter® from his West Vancouver home. “When it happened, it was an earthquake.”
He kept a journal to document his experiences, which he eventually turned into a book entitled Neither Married Nor Single: When Your Partner Has Alzheimer’s or Other Dementia. In it, he combines his personal accounts and psychiatric insights in order to delve into a lightly-explored topic: the effect of dementia on couples.
Dr. Kirkpatrick’s book tackles the challenging questions about caregiving, grief, loss, love, and sex for those whose partners have dementia, and provides effective strategies for living and loving in an Alzheimer’s marriage.
“It’s meant to comfort and to teach, to tell people facing this experience that they’re not alone, and also that it’s normal to be conflicted,” said Dr. Kirkpatrick.
As mental health professionals, he and his wife readily sought counselling to help them cope with the diagnosis and the disease’s progression. As Clair’s condition worsened, and she became less aware, she would sometimes sit in the next room watching television while Dr. Kirkpatrick spoke to the counsellor.
As often happens when a spouse develops dementia, he gradually evolved from partner into caregiver, and started to make decisions for both of them.
Dr. Joel Sadavoy, Medical Director at Toronto’s Reitman Centre for Alzheimer's Support and Training, told Mind Over Matter® that couples facing these challenges often experience what is referred to as “disenfranchised grief.”
“The nature of the relationship dramatically changes,” explained Dr. Sadavoy. “Embedded in that is grieving for a relationship that is still alive, but no longer what it was. Nobody is dead, but it is an experience of intense loss. Something has died.”
Dr. Kirkpatrick ultimately experienced one of the most traumatizing aspects of Alzheimer’s disease when his wife started to no longer recognize him. She had grown wary around him, with her recognition of her husband coming and going. One day she called the police, telling them that he was an intruder in their home. It was a tipping point. He checked Clair into a hospital and then into a long-term care facility, where she spent the final six years of her life.
While he visited her regularly, he tried to take care of himself as well: exercising, spending time with his children, and joining support groups where he could seek comfort from others going through similar experiences.
At the outset of his visits, he would introduce himself to Clair and sometimes she would recognize him, sometimes not. He would try to remind himself that it was the disease that was erasing him from her memory, not anything that he had done or failed to do.
“She doesn’t know who I am, but I still know who she is and on a good day I know who I am myself and that makes me a better partner. I’d say to be honest I had more difficulty at the end as she recognized me less and less.”
Similar to the plot of Away from Her, Dr. Kirkpatrick recalled how Clair bonded with another resident in the care facility. On one particular visit, he walked into the common room only to find Clair holding hands with a male companion as they watched television. He chuckled at the memory.“It was kind of sweet. He reassured me, ‘we’re just holding hands.’ I said, ‘that’s all right.’ We all need somebody, even in the darkest, latest stages of our deterioration. Often, but not always, we’ll still need somebody for comfort. To bond with, to hold hands with.”
Dr. Kirkpatrick noted that the relationship never progressed beyond the handholding stage, but there have been other prominent cases that have raised sensitive issues about the ways in which Alzheimer’s disease can reshape marriages.
The husband of retired U.S. Supreme Court Justice Sandra Day O’Connor, for instance, fell in love with another resident in a care facility. Justice O’Connor supported his relationship, noting that it brought him happiness after the disease had made him suicidal.
After American model, restaurateur, and lifestyle guru B. Smith developed early onset Alzheimer’s and lost her memories, her husband Dan Gasby publicly announced that he had struck up a new romance. He and his girlfriend shared caregiving duties for his wife and described it as a loving and supporting relationship, even as they faced blistering attacks in the media.
Scottish media recently reported that an Aberdeen man named Bill Duncan, who was diagnosed with Alzheimer’s disease in 2011, forgot that he had been married to his wife, Anne. But he fell in love with her again (believing that she was a new girlfriend), proposed for a second time, and got remarried in their backyard.“It was absolutely magical,” Anne told STV news. “I felt like I really was getting married again.”
Dr. Sadavoy of the Reitman Centre noted that it is less common for those with Alzheimer’s disease to begin a new relationship. More often they will withdraw and become less communicative.
In some instances, there is a phenomenon known as “shadowing,” in which the individual with dementia latches on to his or her spouse, not wanting to be separated.
Caregivers dealing with shadowing often report a feeling of claustrophobia, where they are constantly with their loved ones and are never allowed to do anything alone. Even taking a shower without interruption can be a challenge for a caregiver.
Dr. Sadavoy said that each relationship is different and requires a unique approach. “Some people just recognize that the disease has taken their partner away from them and have to accept that this has happened. There’s a grieving process that needs to go on. It’s a very complex thing.”
He offers four key pieces of advice for caregivers:
Learn as much as you can about the specific kind of dementia that your partner has developed;
Search for resources that will lead you to the kind of help that you will need;
Seek training for ways that you can develop the skills required to care for a person with dementia; and
Get emotional support for yourself.
The Reitman Centre offers special training programs for caregivers, but Dr. Sadavoy worries that, in general, there are not nearly enough resources and tools available to the public.Dr. Kirkpatrick struggled to deal with the challenges of the disease and is self-critical in his book.
“Perhaps if I had been a little less grief-stricken, in less emotional shock over losing Clair one teaspoonful at a time, I might have done some more mental or cognitive homework back then, maybe a little more reading about what she was likely experiencing.”
He said that doctors and health care professionals tend to focus on the individual diagnosed, but could use more training in how to support the caregiver. His advice to couples who suspect dementia is to seek out a definitive diagnosis, as painful as it might be. He says to beware of the “punishing, altruistic trap that caregiving can become.” Certainly support your partner, but also be proactive in finding professional care and support groups. He urges caregivers to “take care of [themselves] physically, emotionally, and socially.” And, while the support of family and friends is crucial, do not hesitate to seek professional help.
Dr. Kirkpatrick wrote Neither Married Nor Single over the last three years of Clair’s life and it was published nearly two years after she passed away in January 2017.“I found it comforting and almost healing. My fingers are my therapist.”Through his book, he hopes that other couples facing the devastation of an Alzheimer’s diagnosis can learn from his experiences and be reminded that they are not alone.For more information about the Reitman Centre’s programs to assist caregivers, please visit: www.dementiacarers.ca.
Source: MIND OVER MATTER V9