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.
5 thoughts on “Walking In My Shoes”
Yes, the diagnosis that changes all our lives. 5 years ago I folded up my little business, moved 200 miles away from my daughters, grandchildren and friends of 30 years, back to western WA, to care for my parents. Mom was showing signs of dementia, (vascular, it turned out) and in a matter of 4 years was in a nursing home. Dad and I visit at least 3 days a week. Her caregivers there are doing the best they can, but in a very crucial way their hands are tied, and my mother is now at more risk of falling than if she were at home. WA law states that patients must be able to easily remove physical restraints, such as wheelchair seatbelts. Mom’s dementia has made her incapable of walking, but she still tries to. So, out of the wheelchair, and onto the floor! At 83 years, this can cause serious injury. She has not broken a bone yet, but has dislocated he shoulder twice, and it is beyond repair. Bruises, and cuts needing stitches are common. I am trying to navigate the system to find someone who might help get this to the WA lawmakers attention, but no success so far. Dad (89) is now also showing very strong symptoms of dementia, but with my help, still lives alone. I know it’s just a matter of time until I will no longer be able to care for him, and the stress is much more overwhelming than I expected. I agree about the lack of help from Primary Drs. The little baseline test is nowhere near sufficient, and we are just told to go home and see how it goes.
Judy, thank you for sharing. Please consider coming to our Town Hall events this year to learn about the Washington State Plan to Address Alzheimer’s draft and share your input. Subscribe to our enews at alzwa.org to be sure you get information as soon as the events are scheduled.
Judy, my heart goes out to you. Thank you for sharing your story along with mine. It means a lot to me. Together we can lend our voices to others who have lost a loved one to dementia and join the conversation on how our healthcare system can be changed to better serve dementia patients and their caregivers. I hope you continue to follow the blog and share your input. I wish you and your parents all the best. Take care.
Reblogged this on Baby Boomers and More and commented:
When a family member is diagnosed with Alzheimer’s, life as they know it ceases to exist. It’s unfortunate that when they need help and understanding the most, such niceties are oftentimes unattainable.