You will need to travel light, and learn how to be flexible, to find new routes to familiar places, to throw away all of the old maps, all of the old guides. You are on a trip that will demand all of your patience, your stamina, your love....
By Tom and Karen Brenner Alzheimer's Reading Room
Someone you love has just been diagnosed with Alzheimer’s.
You may feel that this is the end of life as you know it. You are probably awash in the ocean of negativity that is out there when people speak of Alzheimer’s. There is the look of pain, of sympathy, the “there but for the grace of God” attitude that well meaning friends and family feel they must convey to people living with Alzheimer’s.
You will be told over and over and you will read over and over again about the walking dead, the long good bye, the loneliness, the exhaustion, the fear, the dread, the…
STOP! There are always choices in life.
You still have a life and you can still make choices. You can choose to be a victim, or you can choose to be victorious. Of course, there is no cure for Alzheimer’s, but there is a path, a way for you through the magical mystery tour that is Alzheimer’s world.
Having Alzheimer’s does not have to mean that your life is over; it does mean your life will be different.
We make our plans for our life: when we get to be this age, we will do this, when we have accomplished this, then we will be able to do that. Life has a funny way of changing and re-purposing our grand designs, our hopes and dreams. Alzheimer’s is not a condition that anyone wants to face or deal with, but you have been dealt these cards and now you must find a way to live with Alzheimer’s and to continue to live your life to the very best of your ability.
The magical mystery tour of Alzheimer’s is all new territory, and it is different for each person. You will have to decide how you are going to take this journey, but you should know that you are never alone, no matter how wild the ride, how frightening the road.
It is important to reach out to friends and loved ones and invite them to take this trip with you.
You will have to be the one who reaches out; when friends and family hear the word Alzheimer’s, they often don’t know how to react, they don’t know what to say or what to do.
People sometimes react to the news of Alzheimer’s the same way they deal with death; they become mute, they feel awkward, they want to flee, they sometimes act as though it is catching!
You will be the one who has to assure friends and family that the Alzheimer’s journey is not about death, it is about life. You will have to tell people you trust and love that this is not the time to say good-bye, this is the time to say hello. Invite people to show up, to visit, to talk, to play cards, to eat a meal, to go for a walk.
This is not about the end; this is about a beginning. It will be up to you to engage your friends and family, to tell them what you need and when you need it.
Your ego, your pride and even parts of your privacy will have to be thrown under the bus before you can begin this tour. This is understandably hard for many people. We are all trained in this culture to be fiercely independent, to be strong and capable. Many of us believe that asking for help is a sign of weakness; we don’t want to burden anyone.
Sometimes, when you ask another person for help, or when you tell another person how you are truly feeling, you give them a great gift; you give them the opportunity to be compassionate, to come to the aid of another human being. In our increasingly isolated and busy lives, many people don’t often have the opportunity to practice that most human quality, coming to the aid of another.
When we ask for help, we also give someone else the chance to be in a state of grace, the grace of giving of one’s time, or energy, or compassion.
You will need to travel light, and learn how to be flexible, to find new routes to familiar places, to throw away all of the old maps, all of the old guides. You are on a trip that will demand all of your patience, your stamina, your love. There will be tremendous sadness and frustration and weariness on this tour, but there will also be amazing magic and wondrous mysteries and yes, even joy.
There will be tremendous sadness and frustration and weariness on this tour, but there will also be amazing magic and wondrous mysteries and yes, even joy.
Tom and Karen Brenner are researchers, consultants, trainers and writers dedicated to working for culture change in the field of aging. Tom is a gerontologist and has specialized in creating and researching dementia specific training programs. Karen Brenner is a Montessori educator and has specialized in working with children who are deaf or communication disordered. They have been published in magazines and journals both in the US and internationally. Learn more about Tom and Karen at Brenner Pathways.