My husband’s 10-year journey with dementia has been over for several years, but nearly every week I discover another friend or colleague who has embarked on the long goodbye. I can’t pretend to give anyone advice, but here are a few things I learned from my husband’s battle with dementia:
- Develop an attitude of thankfulness. Start every day by listing at least 3 things for which you are thankful.
- Be present in the moment. I realized how often during a conversation I was mentally distracted. Appreciate every coherent exchange. Savor this present moment.
- Stop focusing on yourself. My husband was anguished over his increasing loss of capacity, but I was selfishly focused on my own feelings. I wanted my spouse back, my life back, my standard of living back, etc. I realized to my horror that most of my grief was focused on how my husband’s dementia impacted me rather than how it affected him.
- Look for “collateral goodness” (1). My children were 14 and 17 when my husband’s dementia was diagnosed. By the time my husband died, they were mature adults at 24 and 27. I am sorry that their young lives were defined the progressive deterioration of their father’s mind, but it has made them more resilient than their peers. My once mentally-fragile daughter toughed out the isolation of COVID-19 at her faraway college, and helped others gain perspective. When my son went off to military training, he felt sorry for the young men crying in their bunks at night. Unlike them, basic training was not the hardest thing he had ever had to deal with.
- Reconnect with your religious faith or find it. If you think God has uniquely singled you out for suffering, then you haven’t watched the news or read any history. You find out that God is real when your own strength fails.
- Remember that you are teaching your children how to handle life’s difficulties, even if they are already grown. When my mother was in her 70’s, she was the perfect example of a loving, devoted and completely uncomplaining caregiver. I was in my 40’s when she taught me how to behave in the face of such a trial. When my turn came, I wanted my children to learn from me that we don’t quit just because life gets hard.
- Keep your sense of humor. My husband saw “Finding Dory” for the first time on three different occasions, and enjoyed it anew each time. For several years, I lived inside the movies, “Finding Dory” and “Fifty First Dates.” Laugh when you can.
- Don’t take personally anything that a demented person says. Your loved one, like Elvis, has already left the building.
- Get an annual physical yourself. You are not going to be able to go to the gym, take vacations or have “me” time. Get over it. However, at least get an annual checkup. I developed both pernicious anemia and Hashimoto’s thyroiditis, both of which are easy to diagnose and easy to fix had I just gotten bloodwork. My coping ability would have been a lot better if I hadn’t been so breathless and tired. Do what you can to take care of yourself.
- Most importantly – TAKE CONTROL OF YOUR THOUGHTS. This is a lifelong battle for me and even though I don’t always succeed, it’s a battle that must be fought. Our thoughts control our feelings – not the other way around. If a thought begins with, “I just don’t think that can [fill in the blank],” then STOP yourself right there because if you don’t think you can do something, you won’t be able to. Yes, I am still tempted to look at the decades ahead and worry about “enduring” them rather than enjoying them. Then I remind myself, all battles are first won or lost in the mind. You cannot control what happens to you, only how you react to it. Your loved one is losing control of their mind so you had better improve the control of your own.
Remember that the day will come in which your loved one with dementia will no longer be haunted by the past or worried about the future. They will live only in the present and if they are comfortable in the present, that is all that matters. If they are unhappy at some point, they won’t remember it. We are the ones who carry the burdens of past sorrows and future fears. In that respect, the demented are to be envied. I discovered that the real battlefield of dementia was in my own mind.
Books that helped me: