Dear Family Advisor

My sister is upset with me because I didn't recognize my parents' dementia.

Last updated:

May 17, 2011
anticipatory_grief_and_alzheimers

My mom had a stroke last week. A neighbor called 911, and my dad started following the ambulance to the hospital -- but on the way he got lost for more than three hours. We finally got a call from the police because he had my phone number in his wallet -- he was in another state and didn't even know Mom's name!

My sister is livid with me, saying that I could have prevented this if I'd been paying attention. I live 40 minutes away and work full-time. I care for my parents in every spare moment (I'm divorced and have two teen boys), while all my sister does is throw a little money their way and visit every three or four months.

Dad and I had a blow-up a few months ago over my efforts to help them with their finances, and ever since then they've both been secretive around me. Now I realize they were hiding their illnesses, and maybe other issues as well. I think that not only does Dad have dementia but Mom might also. Now we've got two parents who need a lot of help.

How is all this my fault? How do I get my sister to realize she's partially at fault, too?

Blame is an ugly game. Refuse to acknowledge it. No one can be 100 percent responsible for anyone else, not even the primary caregiver. We can't prevent every calamity, much less a disease. Tell yourself this over and over again. You and your sister need to make a pact to be on the same team and to reject all notions of guilt, resentment, and blame that will rob you of each other's strength and support.

Your sister is probably flinging blame at you because she's feeling it herself. She has no right to accuse you of neglect. If you have to become the primary caregiver, start giving her clear directions about what help you need, what you can and can't do, and how she can contribute -- including financially. Some people need a firm hand and a clear voice telling them what to do. It may not feel comfortable at first, but if she seems to relax when you step forward, then you'll know it's the best way to handle her. Forget trying to make her happy. Your parents need somebody to take charge, and if that happens to be you, then go for it.

The next time your sister starts in, say clearly, "Stop. I love you, but this isn't constructive. We need to focus on helping our parents together, knowing full well that we didn't cause any of this and we can't 'fix' it." Say that firmly and then follow up with, "I love you and need you, and so do Mom and Dad. Now, let's make a plan."

Dementia is sneaky. It rarely makes a frontal assault but slips in from the side, retreats, and then comes back even stronger. I daresay that most memory-disorder diseases go undetected for months, if not years. The people who have the condition can cover it up, deny it, and even compensate for it. The family member who cares for them can feel sideswiped. Life is busy; our parents seem in good health, good spirits -- and doesn't the aging process contribute to a little bit of forgetfulness? How can we tell what's quirky or forgetful behavior versus dementia? It's difficult to determine, since these diseases are still largely diagnosed by their symptoms.

So give yourself the benefit of the doubt. You're a loving, engaged daughter. You do your best to meet your parents' care needs. But you're going to have to become your own cheerleader before you can expect anyone else to see all you've given. No matter how aware you are of what's going on, some things will fall through the cracks -- and the same would be true if your sister were the one living close by. Aging, disease, and eventually death are all part of what it means to live on this earth, and neither you nor the medical community can stop that.

It's time to reign in your sister and let her know that caregiving just became twice as challenging. Now the two of you have two parents to care for. You need each other more than ever. Get her involved, but don't let her bulldoze you or cause you to second-guess yourself. Keep to your own style of caregiving. If she comes in with guns blazing, let her -- she'll calm down or burn out quickly enough. Caregiving is a marathon -- no, it's an ironman triathlon!

Above all, keep that blame door shut. It might be easier at first to simply ignore any digs your sister pokes you with, but over time these words will eat at your relationship like battery acid. Be firm. It's not just about your feelings. It's about the fact that you two are going to have to figure out how to care for your parents together; how to love each other through this; how to be there for one another; and how to come out of caregiving with grace, forgiveness, and -- we can hope -- a relationship that will have weathered a tough time and is worth protecting.