By Randi Jensen
I had no idea when I married my husband 33 years ago that he had a secret that even he was not aware of. He never spoke of or gave any hint that he had endured life-changing physical injuries while fighting one of the most unpopular wars this country has ever fought.
We’d been married 20 years when the sequelae of his traumatic brain injury from his service in Vietnam first made itself evident. I had no idea what this meant for us in the long run – for the rest of our lives together. Because ignorance is bliss, we lived in continuing complacency and ever-growing compensatory coping behaviors.
I know it sounds so very naïve, but it came upon me one day that things had gotten to a point where I could not blame his loss of hearing and confusion on just lack of restful sleep. Something had shifted in a definite and frightening way.
One night when the rationalizations became indefensible, I called the Helpline number for the Alzheimer’s Association (1.800.272.3900.) A young man answered, and while patiently listening to me uncontrollably sob for 30 minutes, he just quietly whispered to me.. “Breathe… it’s going to be okay… just breathe.”
I dove into the information the Alzheimer’s Association Helpline sent me, studying and learning everything I could to help myself help the love of my life. I learned what to say and not to say, what to do and what might not work.
I began to realize if I didn’t take care of myself, I would not live to help him. Helping him became the goal. But how could I even begin? All I could think about was loss, loss, loss. All I could focus on was the pain of never having the future my husband and I dreamed of.
Shortly after this horrendous realization, I took a flight home to Seattle from Boston. I sat next to a gentleman whose wife had Alzheimer’s for the last 12 years of their lives together. We shared a conversation (which I realize is no longer an expectation sitting next to another on a long airline trip.) This man shared with me his entire caregiving journey with is precious wife as her disease took her slowly away from him and their children. He mournfully revealed that he now tries to live the future they had envisioned for their senior years.
As I listened, I began to understand how much every day matters. With obvious pain and longing in his voice, he leaned towards me and said, “savor and cherish every moment with your husband that you can. Try not to pay much mind to the difficulty or the irritation. The one thing you must remember is you are living it from the outside, but he is living it from the inside. So every sweet and tender moment you share together, hold on to it. It’s those memories you’ll keep close to your heart. It’s those remembrances you can hold on to, when he will no longer be able to. And that will keep you going – through all the grief and pain. That will remind you that you must take good care of yourself in order to prolong those moments for both of your sake.”
And that is what I hold on to… that advice I am so grateful for…
The Alzheimer’s Association 24/7 Helpline (1.800.272.3900) is available around the clock, 365 days a year. Through this free service, specialists and master’s-level clinicians offer confidential support and information to people living with the disease, caregivers, families and the public. To learn more go to alz.org/help-support/resources/helpline