By Anita Harvey
When a trusted neurologist told me, “Your mother has dementia, most likely Alzheimer’s,” I knew there was no escape from the cold reality that my life had changed forever. My future was set and an unavoidable path unfurled before me. The only choice I had was to accept the cruel diagnosis, gather my strength, and slip on the shoes that so many are forced to walk in.
As I adopted the role of advocate and caregiver, what shocked and surprised me most wasn’t the complexity and horror of Mother’s disease, but how little help and guidance I received from the professionals we turned to for help: doctors, nurses, hospitals, and care facilities. In fact, it seemed that instead of helping us, the system in which we placed our trust was actually designed to work against us. I came to realize that those who are responsible for the bulk of the hands-on care of dementia patients (nurses, aides, social workers, and companions) were often underpaid, under-trained, overworked, and unappreciated. The more help we needed, the less we received.
I knew something was terribly wrong with my mother, well before I received the diagnosis. When the first troubling signs appeared, I alerted her primary care doctor. However, no matter how hard I tried, I could not get my mother’s own doctor to recognize and treat her illness. In my desperation, I sought help from a neurologist to get the diagnosis I desperately needed. My mother’s doctor seemed more interested in Medicare reimbursement than helping my memory-impaired mother. I knew how important it was to have a doctor that understood dementia, so I searched for a primary care doctor outside the established system, one who was competent and accessible. Our first experience with the healthcare system made me realize that doctors must place more emphasis on diagnosis and education for dementia patients and their families. Though there are no known treatments or cures, much can be done to safeguard the health and well-being of a dementia patient if a diagnosis is given early enough.
After three hospitalizations and one stay in a long-term care facility, I realized that no accommodation would be made for her disease. The only support we received for her Alzheimer’s was to be told, “If your mother becomes unmanageable because of her dementia, we will have to use chemical restraints.” If the doctors were willing to acknowledge a patient’s dementia, the individual’s needs could be assessed, and something as simple as a note on a white board or other visual or auditory cue could be utilized to support them. If there is inadequate staffing, families should be encouraged to stay in order to help their loved ones. Chemical restraints can further prevent a dementia patient from participating in their care and increase the risk of falling; in my opinion, they should be the last resort, not the first. Ignoring a patient’s dementia, no matter how caused, should not be an option for any healthcare provider. Understaffing, under funding, and lack of education are not excuses that we should be forced to accept.
The Alzheimer’s Association may be making great strides in research, increasing awareness, and providing valuable counseling, but doctors, nurses, hospitals, and care facilities need to be working just as hard. Until there is a cure, Alzheimer’s disease will, in some way, touch us all. One day you may find yourself walking in my shoes.
Anita was born in western Washington and has lived in the area her entire life. She is married to an incredibly supportive husband, Lyle. She is a production manager at a local, family owned, company and has been with the same company for over 26 years. She and her husband love and enjoy the beautiful outdoors of the the Pacific Northwest. Follow our blog for more of Anita’s story next week.
Are you a caregiver? Join us at the Snohomish County Caregiver Conferences this fall to gain the education and support you need.