How the Cartys took advantage of the full-service package offered by a family-practice-based memory clinic, which supported them from diagnosis to grieving through the entire dementia experience.
For decades, Mike Carty worked as an accountant for international firm PricewaterhouseCoopers.
When he retired, in his sixties, he continued to sit on community advisory boards and committees in his Kitchener, Ont., area. He handled his family’s finances as he always had. He was active, engaged, healthy. It was Pat, his wife of 54 years, who noticed his forgetfulness.
At first, it was little things, like missing appointments and stumbling on the names of familiar people. “The things people joke about,” says Pat. “You know. Senior moments and all that.”
That was six years ago. Luckily, Pat was able to convince Mike to discuss his worsening symptoms with his family doctor. Mike and Pat are both patients at the Centre for Family Medicine in Kitchener run by Dr. Linda Lee. (The centre has three locations in Kitchener and one in Wellesley, Ont.)
Not a regular family clinic
Lee is developing a model of a family-practice-based memory clinic that will allow patients to access the care they need without a referral to a specialist.
Mike’s doctor, Joseph Lee (Linda’s husband, who also works at the clinic), ordered blood work to rule out low vitamin B12 and diminished thyroid functioning (both of which can cause dementia-like symptoms) and an MRI, which shows if there was a stroke, which could account for cognition problems. Cognitive testing (pen-and-paper questions, puzzles and challenges to evaluate reasoning, recall, and brain functioning) followed.
It took nearly a year and four visits, but in 2009 the diagnosis came: Lewy Body Dementia.
“Our association with the memory clinic didn’t end with the diagnosis,” says Pat. “That was really just the beginning of our long and wonderful relationship.”
Services at the family-practice-based memory clinic
For six years, Mike and Pat went to the memory clinic four times a year; they were long visits, each lasting a few hours. Mike repeated those cognitive tests (to create a base line of his abilities and monitor changes), and later, as he was prescribed medication to manage his symptoms, he saw a pharmacist to review their impact.
What sets this approach apart from other family practices that don’t offer a dedicated memory clinic is that services were not only for the patient.
“Mike would see the doctor. I would go off in another room with a social worker and she would go through a list of questions,” remembers Pat. “How was I coping? What was going on at home? How was I feeling? How had the disease affected the relationship? It was both of us who were supported, not just Mike.”
Even the couple’s adult children attended meetings. “The clinic recognized that dementia is a family dynamic,” says Pat.
Mike would see the doctor. I would go off in another room with a social worker and she would go through a list of questions. How was I coping? What was going on at home? How was I feeling?
Besides personal coping strategies, visits also included education on how to live with Mike’s symptoms. Hallucinations and nightmares are especially common with Lewy Body. It’s important not to argue with a patient in the midst of a hallucination or to raise your voice in an effort to wake them from a nightmare.
“But everyone in the family has different ways of dealing with him,” says Pat. “It can tear families apart when everyone is trying a different method and trying to fix things. You have to come to the realization that he can’t be fixed. So it’s a letting go of those expectations.”
As often happens with dementia, the family’s ability to cope with Mike’s needs lessened over time. Pat was his primary caregiver and determined to keep him at home as long as possible. Eventually she needed PSW help at home (to bathe Mike and to give herself a break), so clinic staff coordinated with the local Community Care Access Centre.
When it was time to consider long-term care, the clinic collected information for Pat, arranged for site visits, and ultimately secured a space in a facility a short drive from the couple’s home. “I couldn’t have gotten through it all without the clinic,” says Pat.
For Pat and other caregivers, it sometimes takes an outsider to recognize the strain. “I thought I was doing quite well, but the clinic said, ‘You’re worried about Mike, and we’re worried about you,’” she remembers. “We came to the decision to have him admitted [to a long-term care facility], which was the hardest thing I did in my life. To take him there and actually leave him there…he knew what was going on, but not fully.”
Still, that decision allowed her to “go back to being the wife, not the caregiver, and I’m so grateful for that.”
Mike died six months after the move. Pat has sold the house they shared and bought a more manageable condominium. She is still grieving and adjusting to life without the caregiver role, and the memory clinic will help with that transition. She’s already had her first appointment alone, and she can continue to see the social worker for as long as she needs.
To read more, go to The Centre for Family Medicine Centre’s website, here.
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