Where one story ends, another begins. It’s three and a half years since Bill died. In that time I’ve spent hours, days, weeks and months processing our journey together through our 49 years, and our 15-year journey with Alzheimer’s. This memoir is part of that processing.
While I spent a good part of our last year together being angry about what was happening to him and to us, I do not believe anyone who did things I couldn’t understand or that infuriated me then intended to cause harm. However, I’ve emerged from the experiences Bill and I had during that year with the belief there is a profound lack of understanding of how patients with dementia are treated affects both the patients and their families.
That Alzheimer’s itself is not understood is a given. If it was understood, there would either be an effective treatment for it or management of it by health-care professionals that would always be in the interest of making the patient as comfortable as possible and helping primary caregivers if a patient is kept at home as much as possible to provide care that keeps the patient comfortable and engaged with life for as long as possible. But that isn’t the case.
While many of the front-line staff in all three hospitals who dealt with Bill did treat him with the kind of compassion and respect anyone with a terminal illness deserves to be treated with, far too often his care and treatments were not based on compassionate care. Far too often they were based on fear, and/or a profound lack of understanding of how what the professionals were doing was affecting the patient and his family. Often coming from the top down. And on hospital policies designed to expedite care and create rapid turnover, as if the patient had an acute illness or injury that could be cured by temporary interventions such as a pill, surgery, or a cast and the patient could be counted on to do whatever else was necessary to keep themselves alive and active without intervention.
Through our years of living with Alzheimer’s, Bill and I had several different kinds of support. The health-care professionals we dealt with to varying degrees; the support group I attended for over 10 years; the Alzheimer Society of BC, the two organizations Bill volunteered with for as long as he could, The VIHA support workers who came to our home, the Adult Care program he attended for almost two years; strangers in our community (and in Hawaii) who helped us out when Bill got into trouble, and the caregivers I hired privately in the months Bill was back home before he got pneumonia. And always friends and family.
I will always be grateful for the warmth and kindnesses both Bill and I received from individuals who did their best to understand what was, and is, an unfathomable disease and provide the best care and support they could given the tools they had and the constraints they may have been under.
But our health-care system when it comes to how patients with dementia and their families are dealt with, and the supports provided to those who are front-line workers with dementia patients, needs to change.
Acute-care settings are not set up for long-term care and yet dementia patients with no acute illness are routinely kept in acute-care hospitals because there is nowhere else for them to be. The Tertiary Care ward we experienced was also not set up to deal with the variety of patients and types and levels of dementia they are forced to deal with. In general, I believe cluster housing of dementia patients in confined settings is a recipe for disaster.
Health-care workers from the top down who deal with dementia patients need to be properly trained to assess situations and provide whatever care is needed for a wide variety of scenarios. And that includes extensive training in de-escalation strategies and continuous workshops to learn and to practice (perhaps with sessions that include role-playing as one learning method) current best practices in dementia care.
On wards where dementia patients are housed, there needs to be adequate numbers of staff to deal properly with people who may no longer be able to express their needs, with the heavy majority being fully trained, full-time, or permanent part-time employees.
Care needs to be changed from time-and-task oriented to patient-centered, which means whatever time and means are required to properly care for someone has to be the prime directive, not expediency.
For families who choose to keep a dementia patient at home, there needs to be adequate and easily accessed supports of varying kinds.
No doctor should ever be able to perform procedures on a patient that require the patient’s—or a primary caregiver’s consent if the patient is incompetent to give their consent—without that consent.
And lastly, or firstly, no doctor should ever be able to certify a patient who has a primary caregiver who has a legal Representation Agreement for that patient without extensive consultation with the primary caregiver, and in-person assessment of the patient at the time the doctor believes the patient should be certified.
I want to see lasting, positive changes in our system regarding the housing and care of dementia patients made. So, I have joined a committee that is working toward making our community a place where dementia patients and their caregivers can live life to the fullest for as long as possible. It won’t be a short-term project, and I may not live long enough to see all of the things I want to see changed, changed. But I plan on doing my best to help make changes happen.