Brenda Bouchard’s mother already had Alzheimer’s when her husband was also diagnosed with the disease. The Alzheimer’s Association has provided Brenda with a constant source of support and guidance.
“When you receive the diagnosis of Alzheimer’s disease, there’s fear and denial that go along with it.” Brenda Bouchard was no stranger to Alzheimer’s, her mother had had it, but it caught her unawares when her husband received the diagnosis. “It’s a difficult disease to accept. My husband had a difficult time accepting it, as did I.”
Some months later, Bouchard acknowledged that the care her husband required was more than she could provide on her own, and so reached out to the Alzheimer’s Association, who provided her with a care consultant.
The Association also educated Bouchard about the disease; they explained about how a patient’s behavior can change suddenly. “An Alzheimer’s patient doesn’t know which behaviors they’ll experience, how long it will last,” she says. “So having our care consultant consistently with us, she has helped us transition through many different behaviors with my husband. She knows him very well, she understands the disease very well.”
As a care-giver, she attended a few support groups, but had difficulty in identifying with others in the group. They seemed to be largely composed of children caring for parents, or people 20-30 years older than she, caring for their spouses. Bouchard and her husband were only in their 50’s when they received the diagnosis. Younger onset Alzheimer’s can appear in patients as young as 40.
The Association reached out to Bouchard when they decide to start a support group for younger onset caregivers, like her. Because the members of the group were geographically dispersed, they met via teleconference. “Remarkably it went very, very well.” Over the years they became quite close, “we are part of the fabric of each other’s lives, after this, because my other fifty-something peers are not dealing with this with their spouses.”
The Association doesn’t only look out for the well-being of the patient, its equally concerned with the well-being of the care-giver. “Being a care-giver is a very exhausting job,” says Bouchard with a sigh that can only hint at the struggles related to such work. “And many care-givers end up getting very sick from the stress of caring for their loved one.” The Association helped Bouchard acknowledge when her husband’s care requirements had escalated to the point where it was time was to place him in an assisted living community. “It’s not an easy decision to make; it’s not a decision I ever thought I would make. But as my health started to decline, they were clear with me that it was time to place him.”
And placing her husband in such a community has been a boon for them both. “I’ve probably given my husband a gift. He is so loved by the people who work in the community, so accepted by the other residents and their family members. And he’s comfortable there, he thinks it’s home and he feels safe.”
It’s a long road from diagnosis, through acceptance and around the curves of caring, and Bouchard stresses it’s not something anyone can or should try to attempt without help. “It’s really important to me to let people know that the Alzheimer’s Association is there and they can help you.”