Dear Family Advisor

Dad Has Dementia and I Find Myself Lying to Him More and More. The Guilt is Killing Me!

Last updated: Feb 07, 2012

carol

Dad really, really wants to go back to his home (which is now up for sale), but it's not safe for him to live alone anymore. He has dementia and reasoning with him is impossible. I feel like I've started to lie to him about everything -- that Mom's at the store (she died three years ago), that his house is being fumigated, that his car is in the shop.

I feel so guilty, but it's truly the best way to keep the peace. How do I deal with the guilt?

It's a big challenge to handle Alzheimer's behavioral and memory issues. The guilt you feel coincides with your need to spare his feelings, cope with your own, and make everyday life as smooth as possible. Let's break each of these apart and look at them one at a time. You might not be able to "solve" them, but I hope you can come to some measure of peace.

It hurts to see the confusion and frustration in your dad's eyes when you have to tell him that his wife is no longer here, or that he can't drive any more. I've walked that same road with my mom, so I know how hard it is to have to say those words. And you don't just say them once (which is painful enough), but over and over. So you avoid, lie, and do everything you can to soften the blow.

There are great ways to deal with Alzheimer's behavior that can help, but they don't "fix" anything. You can distract ("Why don't we walk to the mailbox?") or redirect ("Would Mom have liked this scarf?") or even get to the deeper feelings ("You miss Mom, don't you? Me too"). But you know that five minutes from now you may have to do it all again.

And while your dad may or may not fully feel his losses, you do. In many ways, what you're feeling is grief. You're trying to work through the emotions of letting go of who Dad was while embracing this new Dad and new caregiving life. Impossible? Not really. I know that it's far, far from perfect, but life can still hold much sweetness.

Vent to a girlfriend, to your journal page, to your support group when you need to. That's deeply important. Sign up for Steps & Stages here at Caring.com and share what you're going through with other caregivers. It helps to realize you're not alone. In other words, do all you can to give yourself the support you need to get through this. It will make you a better, braver, more relaxed, and even more hopeful caregiver.

Next, I can't begin to tell you how important it is for you to get out and take a break. Start with five minutes. Sit on the front porch -- alone. Drink a whole cup of hot tea and do nothing but rock and enjoy the birds. Or put on some music so that you can sing while enjoying an extra-long shower.

Begin to see your life as separate from your dad's. That doesn't mean you don't love him or that you're not a good caregiver. It means that you're a separate person, which you are. Do one thing for yourself, outside the home, each week. Sign up for a yoga class at the local rec center, join a book club, surround yourself with something new and with people outside the caregiving world. You need to see that life does indeed go on. This will actually give you more joy and energy, rather than taking it from you. You'll come back renewed, with something different to talk about, and you'll find that you appreciate your dad much more.

Focus on what's good. Learn to be grateful for the smallest of things: if your dad smiles at one of your jokes, if his face lights up when he watches a particular show or pets a kitten. Be grateful for your home, a comfy mattress, a friend you can always call. When you start to wander to the "bad neighborhood" of your mind, pull back. Go for a brisk walk, bake muffins, or put on music and literally drown out the voices of doom and gloom. In some ways, it's about staying one step ahead of the stress and loss that tries to gain on you.

Now, the guilt. Guilt is something we choose to embrace. I know it doesn't feel like it now, but guilt is just a series of thoughts. You have to accept that you didn't cause Alzheimer's, and you can't fix it. All you can do is to make your dad's life as comfortable and safe as possible, while balancing your own needs and those of others you may be responsible for. Guilt only feeds your dad's emotions and creates a vicious cycle. Yes, his wife is gone; true, he can't drive; no, it's not safe for him to live alone. All that hurts. No way around it. All you can do is to offer alternatives -- you get to run errands together, he gets to be a part of your family now, or he's in a care facility where he's safe and can make new friends and connections. Not owning a home can be a good thing, since there's a lot of responsibility and even loneliness that comes with living alone. I know it's not ideal, but all we do is make the best of our situation -- each of us. Your dad can't reason this all out, but you can.

Every time you feel guilty, see it as battery acid being spilled on your life -- eating and corroding the joy and sweetness the days have to offer. What would you do with something that toxic? You'd clean it up fast, get it out of there, and try to preserve what's left.

Gratitude is the antidote to guilt. It won't undo the damage, but it keeps it from spreading further. You have your dad, and you can choose to love him just as he is, and you can embrace all that you've lost -- while focusing on the good that remains.