Dementia: Moving Beyond Diagnosis toward Living with the Disease

Caregiver, patient expert
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For most anyone who has been diagnosed with dementia, or has loved someone with a type of dementia, the formal diagnosis was a moment frozen in time. A moment where the thought of possibly having a brain destroying disease became a confirmed reality. That pivotal moment is life changing, however people can move beyond that moment in time and learn to live with dementia.

For our family, that moment arrived after my dad came out of a surgery that was supposed to repair damage caused by a World War II brain injury. We had seen Dad wheeled into surgery. He’d propped himself up on one elbow and given us a signal that all would be well. That hand sign was accompanied by his signature smile.

When Dad awoke after surgery, he was paranoid. He was frightened. He was forever changed. Something went wrong in surgery and Dad came out of the procedure with severe dementia. A movie of that span of time can run in my brain with the slightest encouragement. I don’t dwell on this movie, but it’s there and always will be.

Dementia, whether Alzheimer’s, vascular, Lewy body or a variant like my dad’s, will always progressively worsen. People receiving the news are aware that the diagnosed person’s mind will gradually be destroyed even though the body could live for years. The diagnosed person may think, why bother? My life is over except for anger, frustration and fear. There will be no joy.

That’s a normal reaction, part of the grieving process. Time to experience and move beyond these feelings should be allowed. But over time the reality that there is no choice but to accept the diagnosis and move forward will settle in.

When this happens, we can hope that people understand that living with dementia, while no one’s first choice, can still accomplish things. They can still have a life with meaning and moments of joy. Caregivers, too, will experience gratifying moments as they help their loved one through this difficult time of life.

Many people with dementia choose, in their earlier stages, to become advocates who go out to teach others about the disease. Many caregivers do so, as well. In going public with the disease, they make an enormous contribution to society that they would have been unable to make before their diagnosis. These courageous individuals are  gradually helping to erase the stigma that accompanies not only dementia but other diseases that affect the brain.

Many people living with dementia aren’t inclined to be so public, but they can continue with hobbies previously enjoyed. They often can garden and do chores around the house. They can enjoy friends and continue to love and be loved by their families.

Slowly, they will find themselves unable to accomplish as much as they once did. They will begin to need assistance with more and more activities that they once took for granted. There will be an ever increasing need for validation by their caregivers. However, there can still be moments of understanding. Moments of enjoying music or movies together. Of enjoying family gatherings. Of enjoying the accomplishments of loved ones.

Even with dementia, people go on living. They may live differently. Indeed, eventually they’ll have no choice but to live differently. While dementia dramatically changes your life, all the diagnosis does is confirm what you already knew. You are the same person after the diagnosis as before. Now is the time to plan how to live not despite, but with dementia.

Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at _ www.mindingourelders.comand www.mindingoureldersblogs.com.  On Twitter, f_ollow Carol @mindingourelder and on Facebook: Minding Our Elders

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