2: Join the Journey

2: Join the Journey

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Join the Journey

When we are no longer able to change a situation, we are challenged to change ourselves.

~Victor Frankl

I work in senior housing — a safe, friendly, comfortable community for seniors that provides them with an opportunity to live independently or with some assistance while still maintaining their sense of self-worth and independence. I have done this work for more than twenty years, and many times have heard family members say, “I don’t know how you people do it! I can’t deal with just one elderly parent, and here you all are having to work day in and day out with so many of them!”

Here’s my answer: We join the journey. We love them and care for them just the way they are now. They are brand new to us. Because we have no history with Aunt Mae or Grandpa Joe, we aren’t disappointed by their need to use incontinence products, or their inability to remember their address, or even their constant questions about what day it is.

We love and care for the people they have become. There’s no past history for us. No memories of how they built their own company from the ground up, or helped raise funds for the Sunday school wing of their church, or organized the neighborhood carpools. We love them today — incontinent, feisty, forgetful.

We join their journey, and we know lots of ways to help them help themselves when family members get frustrated. Almost everyone grows up seeing their parent or grandparent as strong and capable, but when that former math professor can no longer remember how to write a check, families can get embarrassed — not for themselves, but for the parent who used to be. It’s okay with us. It’s our job, and more importantly, it’s our calling to love and respect the person that math professor is today — not to try to steer him down a path he no longer sees or understands.

Once, one of our residents became agitated during an afternoon cloudburst. Daughter Carol was trying to reason with her mom, who was standing in the hallway, wearing her raincoat and looking for an umbrella so she could go outside. Miss Caroline, a normally gracious woman, but a woman with Alzheimer’s, had not been outside of our building unaccompanied in quite some time. She had never, as far as I knew, become upset because of rainy weather and we were all — her daughter, her assigned caregiver, and I — at a loss as to how to calm her and encourage her to stay indoors. Finally, after about ten minutes of trying to talk her out of going outside, someone asked her a question she could grasp and answer:

“Miss Caroline, why do you need to go out in this awful rain?” This mother of eight sons and one daughter gave a deep sigh and looked each of us in the face as she answered: “The children will be coming home from school. I don’t want them to get wet — I have to meet them at the bus stop.”

This was a Join the Journey moment. A light dawned for us all — including the grown daughter who was standing right there. We quickly assured her that a neighbor was picking up the children and that she would bring them home. Satisfied that her children were safe and dry, Miss Caroline returned to her apartment, took off her raincoat, and settled in her room for the rest of the afternoon.

Join the Journey. It’s hard. So very hard — especially for those who remember when their loved ones were titans of business, supervisors of factories, the go-to moms for bake sales and carpools.

But to live in their moment, to allow them to have the pleasure of the day without forcing a reality they no longer understand — now that is love at its finest.

It’s not easy. And not everyone is a Miss Caroline, willing to hear your words and absorb them and accept them. But many are.

Join the Journey. Let go of their past, and your own, and spend whatever time is left to your loved one on their terms. Don’t take their loss of memory personally. Those memories you shared from your childhood are still precious to them. They’re just locked away. They aren’t deliberately forgetting their keys… their glasses… their teeth. Those things just aren’t important to them the way they are to you and me.

Join the Journey. Love them for who they are in this moment. Be old enough, wise enough, and caring enough to set yourself aside. Take heart that the parent who raised you, the grandmother who baked you cookies, the father who taught you to fish is still in there and still needs your care, your love, your patience. Though you may be a stranger to them, they can still recognize kindness.

It’s not easy loving someone with Alzheimer’s or other forms of dementia. But it’s oh so important that you do, and it’s a lot easier when you love the new person they’ve become and join them on their journey.

~Ginny Dubose

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