I live 1,200 miles from my parents, who both have dementia and other ailments, and my sister is their full-time caregiver. I have to work -- I'm an oncology nurse and if I lose my job, I won't have any income or retirement -- but I feel guilty all the time about my family's situation.
My sister is always making little digs -- that I should visit more often, that Mom and Dad have two children, and that she never gets a break. I call almost every day, pitch in financially, and visit every chance I can -- but it's never enough. Now my parents have started saying things like, "You don't seem to care about us anymore," and that hurts.
How do I establish that I really do care and I appreciate all my sister does, but the situation isn't something I can change?
Many families think of one person as the hero and, which tends to make another "the villain." It's also common for long-distance family members to get a bad rap. Neither characterization is fair, and you have every right to stand up for yourself. But also challenge yourself to look at it from your sister's perspective: Put yourself in her overworked caregiving shoes.
It sounds as if you really do care about your parents and are making a genuine effort to pitch in. Realize, though, that your sister has more to do than ten people could decently manage. Caring for two parents with dementia is over-the-top stressful.
There will come a time when your sister, even with your assistance, cannot meet their needs. She may be aware that this day is coming and is reacting to the fact that she's no longer enough. She's angry and hurt -- at the disease, at the inevitability of death, and perhaps at what her life is like right now. She's taking it out on you in part because you're a safe target. She probably secretly hopes you'll love her anyway.
Try not to take it personally (even though it feels quite personal). Consider her complaining a cry for help.
Even though you can't physically be there for your parents every day, you can on some level be there for your sister every day. Every caregiver needs a caregiver. Along with calling your parents, call her and ask her how she's doing. Send her funny cards and include a gift card. Send her a spa basket or an audio book. Shower her with thoughtfulness. And most important, thank her profusely for all she does.
Try to ignore her snarky comments. Let her vent, and while she's ranting, listen to what's really bugging her. Is there a certain caregiving chore she detests, such as bathing your parents? Maybe you could you hire a care aide for a few hours a week to do that one duty.
Don't be surprised if she balks at your additional efforts. She may want to gripe more than anything. She may shoot down all of your suggestions. Many of us caregivers are control freaks extraordinaire. Resistance tends to happen when you know that if the meds aren't dispensed at the right time the whole day will be thrown off-kilter, or that if you don't sit with them they won't eat. It becomes tough to let go and trust others.
Your parents may be mimicking what they've heard from your sister, especially given that they have dementia. Call often, and ignore the negativity. Most parents just want to know their kids love them. Talk about your upcoming visit or a movie you saw, or ask your dad's advice about a car or leaky faucet. Everyone needs to feel needed.
Continue to visit as often as you can. Day-to-day caregiving is grueling, and your sister needs breaks. At some point, you and she will need to talk about other options such as a care facility or full-time care assistance. Maybe this is one way you can help -- researching affordable options and whether your parents qualify for Medicaid.
In the meantime, have you ever considered moving closer? I'm not saying you should do this -- but at least consider it.
What I hope you won't do is beat yourself up. That helps no one. Don't blame your sister, either. But if she refuses all help, then know you've done all you can and she's making her own choice.
This is the time in life when the expression "when the rubber hits the road" takes on new meaning. As our families need us more and more, we have to do all we can to be the child and sibling we're proud to be. At the same time, you have to determine your own standards. Refuse to give in to guilt and shame.