Dear Family Advisor

I Can't Seem to Get Over the Grief and Shock of Finding Out My Husband Has Alzheimer's.

Last updated:

January 24, 2012
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My husband (not quite 60) has been diagnosed with early onset Alzheimer's. We've spent four months telling close family and friends, making small changes to our lives, and making long-term plans. I finally feel like we've done all we can do prepare for what's to come.

The problem is, now we just sit around, still in shock and not able to move on with our lives. We have no energy, no passion. It's like we're both waiting for him to die. We used to be the happiest, busiest couple I know. And it's not just him; I think I'm worse than he is. I feel like life has been pulled out from under us. Plans to retire, travel, remodel our house -- nothing seems to matter anymore. I know he could live for years, but now I'm afraid of those years to come -- and I'm afraid to be a widow.

How do I move past this?

You move past by just being right where you are, feeling what you feel, and honoring that. You, your husband, and your marriage have taken a wallop. Not only do you get a shocking diagnosis, but then you have to reprocess it with every person you share it with. Even though it's been several months, that's not long for all you've been through. Be patient, allow yourself to acknowledge the range of emotions you're both experiencing, and trust that the old happy and busy couple will indeed emerge again.

How can I be so certain? I call it your natural set point. If for years you were active and happy and vibrant, then your body, mind, and spirit considered this your natural place to be. Part of why all this feels so "off" is that being sad and paralyzed with fear just isn't who you two are. Everything in you wants to return to who you really are -- and it will, because that's what is most natural for the two of you.

You will literally wear out the grief and shock. It will get too heavy and too "old news" to carry around with you. One morning while reading the paper or talking to a friend, you'll make a joke, you'll laugh, and you'll realize it was effortless. Being sad and morose will soon get old for such a dynamic couple.

For now, do what soothes you. Nudge yourself a little to watch comedies, take short walks, or sit outside for a few minutes a day. Force yourself to get out of the house. It's too easy to fall into a "woe is me" syndrome when you have nothing else to think about but your own troubles. What (or who) allows you to forget your own concerns for a bit? Is it playing with your dog? Talking to your granddaughter on the phone? Eat what you love -- enjoy a T-bone steak and some ice cream for dinner one night. Stay away from Alzheimer's horror stories and surround yourself with people who have a positive outlook.

You might also find that you need short breaks from each other. Why? One of you may be having an OK day and then see that the other is still in the doldrums; the happy person may feel guilty and sink back into that somber mood. It might be better if your husband goes to play golf with some pals, or you meet a friend for coffee. Sometimes you have to fake it till you make it, and being around others who are going on with life might rub off a bit. Spending a few hours away from each other also gives you the chance to miss each other! You can come back together with harmless gossip or new ideas.

It's not that you won't still have concerns to confront. Consider writing in a journal. There's nothing like a safe place to spew your anger at the disease and unload all the emotions you've been carrying around all day. But sometimes our spouses don't need to hear all that, so write it in a Word file or a paper journal, or call a good friend. Vent to someone -- and set a timer. Give yourself ten minutes to let it fly, and then force yourself to stop. Venting is useful, but if you go on too long it turns toxic.

You might want to join a support group, but make sure it really is support. Caring.com has an Alzheimer's forum where caregivers gather online to share their journeys. The litmus test is that you feel better (more comforted, encouraged, educated) when you leave than when you arrived.

Next, instead of thinking of all the two of you can't do, why not start a list of what you can do? Mourning what you've lost is normal and even necessary, but at some point you have to hold onto what you have right here and now. Start a gratitude list on a chalkboard on the wall in your kitchen. Take turns adding to it. Don't let a day go by that you don't share what was the best about it. Go for the small things: a cardinal that enjoyed your bird bath, a perfect cup of coffee, Hold hands, cuddle under the covers, go for long walks, and cook dinner together. I love the animated film Up, in which the husband focused on the one thing he and his wife never got to do instead of realizing what a loving and amazing life they'd had together.

What you're facing is difficult; I won't lie to you. You've done all you can to prepare, and you have much to deal with ahead. There's no way around that. But for now, you have each other. When you think about it, none of us know what's to come. Make each day sweet and meaningful.