Marshall passed away 8 months ago today. His passage still disturbs me. Witnessing such a strong, active man decline over more than 15 years and then in the end to become so very frail, dependent on total care for every basic need, retching from drug withdrawal, and unable to communicate, was death by a thousand cuts. At this time, there is no cure or improvement along the long and arduous path of Alzheimer’s disease.
Typically, when someone passes, we mourn for at least a year after their passing. We feel their absence every day, and especially each first holiday without them.
When a loved one suffers with dementia, the passing—and therefore—the mourning, lasts throughout the long decline. We mourn every day and every holiday with them. They are with us physically but not intellectually or emotionally. Our connection with them is one-sided. When death comes it often is not as painful as the journey was. The 24/7, week after week, year after year, always on a decline, is excruciating. Anyone who’s cared for a loved one with dementia, particularly, if it is for a decade or more, understands this.
I recently went on a pilgrimage. Before leaving, I asked friends and family members if they would like me to pray for anything in particular. Many of my family caregiver friends asked me to pray that their loved one went to the Lord. For those who haven’t cared for someone with extensive dementia, this may sound cold, when in fact, it’s very compassionate. Although there are loving moments until one’s death, most of what we witness is painful for us, and likely, our loved one as well. Their lives are nothing like the one they spent their lifetime building. Even if we don’t want to lose their physical presence we know they’re often anxious, frustrated, or angry. Their lives can be filled with imaginary fears.
Only God knows why our loved ones, and we, must go through such a journey. In the meantime, may we hold each other up with support, love, and compassion, even if we do not understand or have lived the experience our self.
The Alzheimer’s Spouse is available from Amazon.com and ACTA Publications.com. Navigating Alzheimer’s is also available from Amazon and ACTA.
(Photo by Lori Ulman)