Where to turn if a loved one was just diagnosed with Alzheimer’s disease
A diagnosis can be overwhelming. Here are several key steps to take.
Every three seconds, someone around the world develops dementia, and in the time it takes to count 65 Mississippis, someone in the United States develops Alzheimer’s disease. As the BrightFocus Foundation notes, approximately 6.5 million adults 65 and older are currently living with Alzheimer’s in the U.S. Each year, 16 million Americans provide unpaid care for people with dementia.
If a person develops Alzheimer’s every 65 seconds, it stands to reason that, in the same amount of time, two or three others become caregivers.
But how does someone prepare for caregiving? The shock can be great, and there’s so much to learn. In the beginning, we don’t know what we don’t know.
Perhaps you or someone you love was recently diagnosed with dementia. Where do you start?
Mourning is natural
No one jumps for joy upon receiving bad news. As with other diseases, sadness sets in when you or a loved one is diagnosed with dementia. Grieving is natural.
When my mother was diagnosed with Alzheimer’s disease, our world was turned upside down. We didn’t know exactly what to expect, though we knew it wasn’t good. My mother initially denied the diagnosis, which is also natural but unhelpful.
Denial is a way to deal with sadness, but not with the diagnosis. It’s a miry clay that cements us in a place where things can only get worse. Symptoms are expected to increase and worsen as the disease progresses, but denial only hurries the process along.
With help from the people who loved her, my mother stopped denying her diagnosis. She entered a clinical trial, took her prescribed medication, did physical and mental exercises, and, by God’s grace, her Alzheimer’s progressed slowly rather than quickly.
There’s plenty of time to mourn and less time to hinder progression. It’s OK to be sad, but prioritize action.
Where to turn
If you and your family are facing an Alzheimer’s diagnosis, you might be in shock. Perhaps your mind is reeling and you feel like an emotional wreck. Where do you turn?
My family gathered strength from our faith in God. We found solace in Scripture. We wandered into unknown territory and learned to tread dark waters. One Bible verse that spoke to me was Isaiah 43:2 (NIV): “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.”
We are on the other side of Alzheimer’s and did not drown. It was difficult, but we’re still here, and our mother has crossed over the great waters into a better place where there’s no illness. Perhaps you can also find comfort in faith.
Beyond our faith in God and his promises, our family also positioned ourselves to receive help in a practical, physical sense. We drew on one another for support and followed through with good health practices. Our mother continued to fight the good fight, and we fought with her. We sought medical attention, helped her with medications, and ensured her attendance at her yearly neurological exam.
The exam helped us to face loss as it occurred. Each year, the neurologist compared my mother’s results with her previous ones. Surprisingly, this was encouraging because the doctor used a point system to define disease progression. It was encouraging to learn that my mother had lost only a few points between visits. The disease progressed slowly.
Seek legal assistance
Thanks to her early diagnosis, we were able to help our mother get her affairs in order while she was still of sound mind, ensuring her wishes would be fulfilled. Having a will and appointing a family member or friend as a trustee is essential. Involve an attorney who is well versed in elder law and set a power of attorney for the future. I was appointed trustee for my mother, and my sister was selected as her power of attorney. Though we had different roles, we worked together in our mother’s best interest.
There’s some debate about who first coined the phrase “knowledge is power.” Whoever it was, they were correct. But if you’re not careful, knowledge can also be a curse, and knowing all there is to know about dementia can be crippling. Still, a balance of knowledge gleaned from trusted organizations, facilities, and individuals is beneficial.
There are many resources that can provide helpful information for your journey with Alzheimer’s disease. In this column, I dispense experiential knowledge that may or may not match your experience. However, Alzheimer’s News Today also publishes science-based articles full of pertinent information, and it’s a great place to begin gathering knowledge about the disease.
National and local chapters of the Alzheimer’s Association are a premium resource. The National Institute on Aging is another.
You needn’t tread dark waters alone.
Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.