Receiving a probable diagnosis of Alzheimer’s disease can bring even the strongest to their knees. It has the power to knock the world right off its axis and will leave in its wake newly named care receivers, care partners, caregivers, and entire families reeling and breathless.
Like so many across this country who receive the news they have Alzheimer’s, Mr. A and his family left his doctor’s office, after a full ten minutes, clutching nothing more than a prescription for Aricept; a few brochures and an appointment reminder to come back in three months for follow-up. They left numb, with no real understanding of what to do next, or how to begin to best prepare for the journey ahead.
Alzheimer’s Care Resource Center
The responsibility that accompanies delivering an Alzheimer’s diagnosis, should include an investment in the time necessary to share information on community based resources and organizations who best understand that the needs of the person with Alzheimer’s are different than the needs of a spouse, daughter, son, and grandchild. Alzheimer’s disease touches the whole family and leaves no one immune to its effects.
On the day they describe as the worst day of their lives; Mr. A and his family, having been referred to us by a friend, arrived in our office after learning he has Alzheimer’s. He looked strong, physically fit, and stood ramrod straight, as he visibly struggled to remain stoic in the presence of his family.
His wife and granddaughter walked in behind him; moving stiffly, their motions jerky and uncertain. Their eyes were brimming with tears, but bravely, not allowed to spill over, as they appeared determined to be strong for the man they both love.
We sat down and six pairs of eyes turned to me, looking like deer caught in the glare of oncoming headlights. They were scared and rightfully wanted to escape the onslaught of what they feared was just ahead. But most of their questions remained unspoken, as each was reluctant to ask them in the presence of the one they most wanted to protect.
As we so often do on the first day we meet with new families, our time wasn’t spent finding solutions to problems, or encouraging them to ask aloud the questions that were swirling in their minds. Instead, our time was focused on providing comfort, reassurance, and a calm, quiet place far different than the medicinal setting and hurried rush of his physician’s office.
We spent time getting to know one another and started to lay the foundation necessary to build a strong, trusting, and long-lasting relationship. One in which will serve to professionally guide and support this family through the long weeks, months and years ahead.
Our appointment ended with an understanding that learning to manage and cope was going to be a process, not an event. There is much to learn and many questions to be answered. Each family member agreed to use the time between now and our next appointment, to be kind and gentle with themselves and each other; and to recognize each will want time alone, and time together, to catch their breath before they come back to see us again.
And when the time comes again for us to work with this family, our first goal will be to help them find firm footing, on what has now become, unstable ground. We will begin by surrounding them with a team of gentle, caring professionals, who based on their own knowledge and expertise; will help guide, support and mitigate just how far their world remains tilted off its axis; and just how firmly their first few uncertain steps into their new future, will be.
Elayne Forgie has spent the last 26 years working directly with patients and families living with Alzheimer’s disease or dementia. She has been recognized by Sharecare and Dr. Oz as the #3 Online Influencer for Alzheimer’s, and as one of Maria Shriver’s Alzheimer’s Advocates & Architects of Change. She is the founder and CEO of the Alzheimer’s Care Resource Center, a 501(c)(3) not-for-profit organization dedicated to helping caregivers cope with the changes and challenges that accompany caring for someone with Alzheimer’s disease.