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Dementia: Tips for the Newly Diagnosed & Their Spouses

By Lara Belonogoff
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During a recent Alzheimer's convention I attended a seminar in which all panel members were part of a couple; one spouse in each pair had recently been diagnosed with Alzheimer’s. All ten older adults shared their stories—which were inspiring and honest—of how slight memory loss eventually was diagnosed as Alzheimer's. Below are some ABCs for couples dealing with a partner being newly diagnosed.

Assert Who You Are

You have dementia or your spouse has dementia. Although it is a part of your life, allowing it to overtake your life will not help you cope with it. With any chronic disease, patients are often told to stay positive. This will not always be possible, so make sure you have someone to talk to. Every panel member in the seminar I attended ardently stated that a dementia support group is necessary. Communication will help you get through this.Life can be frustrating—and a dementia diagnosis creates a veneer of aggravation, sadness and, sometimes, anger. You need to keep in mind what is important and what you do have control over. So how do you let go of things outside your control? Find the things that bring you joy or a sense of happiness and seek them out. On a recent post about Alzheimer's research, one reader whose wife was diagnosed with dementia wrote in to say that patience wasn't one of his virtues. While working to become more patient, you should also keep your sense of humor in the way a small child repeats his hotel room number to himself when in an unfamiliar setting—as you will get lost without it.

Break Free From Blame

Speaking to one another is difficult, especially as the role of spouse changes incrementally into that of caregiver. One panel member with Alzheimer's put it this way: if she had a broken arm, then her husband wouldn't blame her for being unable to do something. She felt that any blame fell squarely on the shoulders of the situation, rather than hers. When my aunt was diagnosed with cancer, she sat down and explained the rather serious situation to her two twin granddaughters. After hearing everything, the little girls looked at each other and one turned to my aunt and said, "That sucks." My aunt began to laugh and agreed, "Yes, it does suck." Later she told me that this was the best assessment of cancer she had heard. Dementia sucks too. Life has been a certain way up until this point. Now the roles are changing and people as a whole are generally adverse to change, especially when nothing about it seems positive. This situation's positive is that early detection aids in disease management. Also—you and your loved ones are the most positive instruments of change in your arsenal—make sure you use it.

Crystallize Your Plan

Make time for the activities you and your spouse can still enjoy. A new diagnosis can feel like an unwelcome visitor. Find the activity where this visitor is left waiting at the threshold and not invited in. One couple at the seminar said that they now traveled extensively, as they had a sense of urgency about seeing the world and enjoying their life together—and while the wife with dementia no longer made plans or preparations for the trip, she still enjoyed seeing new things and tasting different foods. Making time for one another in settings where the disease will be less likely to infiltrate is important. Something as small as "let's go for a walk"; can lead you into a space in which you and your spouse can just enjoy the outdoors—and one another. It can also become a way to deal with the frustration by leaving it behind for a few moments and coming back to it with a new perspective. Also while enjoying life, make certain to plan for your future: anticipate medical and financial concerns beforehand. Set up meetings now with an attorney, financial planner or family members so that both of your wishes are known and in writing.

Wishing you the best,

Lara