For most every person living with Alzheimer’s or other forms of dementia, there’s a loved one – or multiple loved ones – on a journey of their own. For some it can be a somewhat smooth ride even with emotional pain involved: the patient may have decent financial resources, has people around to look out for their best interests and makes the transition from total independence to living with family, caretakers or in a residential facility with relative ease.
For others, it’s pothole-ridden trek in which the person living with dementia believes everyone is out to get them, there are few financial resources, caregivers suffer from burnout and the end leaves a family in fractured despair.
Alyson Kuhn of Monterey knows the journey because it’s one she and her siblings took, along with their fiercely independent “nice Jewish mother,” Caroline, who for decades was a guidance counselor at a prestigious Catholic high school in San Francisco. Kuhn says she first realized something was amiss when Caroline wanted to sign a new contract for her job, from which she had retired a year earlier. But there were other signs. Just about 10 days after her mother retired, she was in a minor car crash as a passenger; after the accident, she began compulsively biting her nails.
Kuhn and siblings put a team into place, including gerontologist Jane Mahakian, then with UC San Francisco’s elder care referral program and who now runs the consultancy Aging Matters, Inc., where she specializes in dementia, Alzheimer’s and elder care. Together, Kuhn and Mahakian wrote a new book, titled I Hear You: Talking and Listening to People with Alzheimer’s. The book offers real advice – “practical rather than academic” – based on Kuhn’s experience with her mother, and Mahakian’s experience in memory diseases. Each chapter includes vignettes, intended to help the reader consider how they might react given the same circumstances.
There are some theories of dementia care that state a family member should be 100-percent honest with their loved one, even over trivial matters. Kuhn prefers what they describe as a “therapeutic fib,” or kind lie. For example, if you suspect someone you love has a memory disease, seek a diagnosis but know you don’t have to share that exact diagnosis with the person.
“There’s an assumption from people without dementia that for the person who has dementia, their life is going to get smaller and smaller and that’s not the case,” Kuhn says. “We say, what is the point of telling something to someone who will be upset, and their knowledge won’t make a difference or makes them concerned you’re not telling them the truth?”