How Do You Tell People You Have Alzheimer’s?

March 18, 2010 at 3:49 pm Leave a comment

You get the diagnosis–Alzheimer’s or some other form of dementia. You and your spouse are reeling. You know you’ve been forgetful, off your game, confused…but you never thought…this.  It’s been weeks and you can hardly say the word out loud. You know that you’ll have to tell your adult children, perhaps a few close people, but how? You don’t want to be pitied. You don’t want to think about what’s up ahead. You don’t want people to treat you differently. It’s easier to hide it than to talk about it, but how long can that go on?

Perhaps we should take a lesson from history and remember how former President Ronald Reagen delivered the news–by letter. I’m not sure how he told his children, but this is how he told the world. He did it with dignity and grace. He did it all at once, and although the news waas devastating, his eloquent style of delivery seemed to buffer the blow and not make him appear weak or small.

From his example we can glean a bit of insight. He delivered the news via letter/announcement. His words were touching and eloquent–and yet he appeared strong and brave–and humbled.  

How Do You Tell People You Have Alzheimer’s? 

  • Decide who you should tell first. Start with closest family members and friends.
  • Take some time to grieve, reel with anger, question and doubt–with your spouse. All these emotions are natural and the only way to deal is to work through them one by one.
  • When it’s time to tell others and if it’s too hard to say, then write a letter or make a video. Let them read it privately so they can deal with their own initial shock, but have a pre-planned time to meet and talk so they don’t rush you–or avoid you.
  • Have some information available for them. Go to the Alzheimer’s Association site and print out some basic information that’s easy to understand. Try to anticipate some of their questions–what stage are you in, what’s it going to be like, how long can they expect for you to be “you,” and perhaps a general plan of what you might consider as far as help and future living arrangements when the time comes. Assure them you’ll not move too fast or make hasty decisions.
  • Get the news to that second circle–friends, colleagues, extended family in a timely manner. News spreads and it’s best heard from you, not a second source. Keep in mind that their reaction has a lot to do with themselves, not you. All of us tend to go to the “what if it were me” place. Don’t get sucked in by their emotions.
  • Create a circle of wisdom to surround you. Your doctors, your local Alzheimer’s Association, elder-care specialists, an attorney or someone who will handle your legal matters, and don’t forget your clergy or therapist. Ask them to be your “advisory board” and request that they be available for counsel and support as you and your spouse need it.
  • Get your affairs in order. Update your will, put financial matters in your spouse’s name or some other person who you can trust. Create a living will and other advanced directives. Do this not because you’re afraid, but as an act of love for those you love–so they’re not grappling with “what would Dad want” as they’re also grieving.
  • Begin a video-tape or journal. Share as much of “you” with those you love now. Leave little notes, words of advice, recipes, how to change the oil on the lawnmower, how to back-up the computer–little things that can help make life easier and also mixes in a bit of your spice and flavor. Check into ethical wills. Preserve the best of you.
  • Live! Yes, it’s a tough disease, but try not to look too far ahead. Gather your loved ones near and appreciate life today. Go for a walk with your grandchild, go fishing with your best buddy, and tell those you love how much they mean to you.

How you tell people can well determine how they treat you in the coming months and years. Right now, you have some “say” in all this. Write down what you want, who you are, and what you value. Make preparations so that your loved ones aren’t left wondering, and share with people what you think might work best for you in terms of future care. Leave a legacy of gratitude, because in the end, it’s how we respond to whatever life throws at us shows the world who we are.

Entry filed under: brain fitness, caring for parents, elder care, family caregiving. Tags: .

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Hi, I'm Carol O'Dell. This blog will include stories and lessons I've learned while caring for my mom, and now as I speak to caregivers around the country. I hope to offer suggestions, ideas and insights that will help others.

While this blog is supported by Dakim Brain Fitness, I’m not blogging to promote the Dakim company or products. Instead, I’m writing about how caring and being cared for affects your life and your family. My hope is that this blog gives you a place to learn, reflect, gain new perspective to make it another day.

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