Dear Family Advisor
I constantly feel guilty because no matter how much I do for my parents, I know it's never enough.
Last updated: Jun 02, 2008
My mom has advanced Alzheimer's and my dad is 92 and bedridden. They live at home with round-the-clock caregivers. I do all the grocery shopping, doctor's appointments, and various errands. I pay the bills and deal with financial matters -- and see them once a week. (They live an hour away). I'm so busy doing all these things that there's no time to just sit and visit. I know Dad's terribly lonely because he has no friends (and due to language barriers and his deafness, he doesn't really talk to the hired caregivers much). He probably wonders why I haven't moved them in with me, since I do have the room. (Because I'd go nuts -- that's why.) Any thoughts on how to better serve their needs and still enjoy my life?
It sounds like you're doing as much as any parent could hope for. Even if you only did half of what you describe as a caregiver, you'd hardly qualify as a deadbeat daughter. But I do have some ideas on how you can ease the burden and have more time to relax -- even with your parents.
First, though, let's talk a bit more about you: As far as I can tell, you are the only one who thinks you never do enough. Guilt is very common in family caregivers -- maybe because guilt is very common in families. But you've got to get off that train if you want to have a life and be an effective caregiver. In fact, guilt won't make you a better daughter, just a frustrated one (giving you another reason to feel guilty).
I say this out of experience. I wanted to make sure my mom, who also suffered from Alzheimer's, was happy, or at least happy enough with her living circumstances. I felt guilty that there wasn't enough of me to go around, like I was always letting someone down.
One day my mother shuffled into the kitchen, slammed her hand down on the counter, and announced, "I'm not happy!" I had done everything I could to make her happy: bought and cooked all her favorite foods, made sure she got to see the TV shows she preferred, asked that she get the hairdresser she preferred, washed her clothes in the laundry detergent she liked -- you name it. But she just stood there staring at me, demanding that I "fix" this problem.
At that point, I had an epiphany: I realized that I could do a lot of things for her, but making her happy was not one of them. I smiled at her, gave her a hug, and distracted her with a Klondike bar. And I decided that the only person I could even attempt to make happy was myself.
I say all this to remind you that although it's great that you care about your parents' social and emotional lives, you can't make them happy and fulfilled. They need to find the happiness for themselves, just as you need to do it for yourself.
Although your dad certainly did not choose his hearing loss, it sounds like he may have chosen not to make the effort to try to socialize with his caregivers. Readjusting to life's changes is tough, and as people grow older, it's often easier just to cling to the status quo, even if having companionship would make them happier. Your dad may not even be as miserable as you think. Older adults can be quite content putzing around the house and running errands. Your dad can't do those things while he's bedridden, but he could still enjoy simple things such as bird-watching or seeing a favorite TV show.
As much as you can, I would try not to rush in your parents' door and get right down to business when you visit. It's important to maintain a relationship that's not based on a to-do list. Spend at least 15 or so minutes just being with them. Watch a TV show together, sit outside if it's a nice day, shoot videos of them telling stories. Bring them a favorite treat -- flowers, some music, a pint of Ben and Jerry's -- and sit down and talk. Tell them about your day. Have you tried filling your father in on some of your activities? Some men like to hear about work and business and how the washer broke and the repairman came to fix it. Likewise, always try to have something to tell your mom. Even if she doesn't respond or know what you're talking about, she may just pick up on the upbeat cues in your voice and body language.
For your part, don't look at the dimly lit house, the groceries that need putting away, the disarray of bills stacked up on the desk. Just be with them, especially at the beginning and end of each visit. This is part of care giving. You won't just be making their day -- you'll feel happier and more fulfilled when it's time to say good-bye.
Consider if there any chores you're doing that someone else could do. Could you put away the perishable shopping items, but let one of the caregivers or helpers put away the rest of the groceries the next day? Can you take the bills and paperwork with you to do at home? Is it crucial that you take your parents to all their doctor's appointments? A visit to the podiatrist or eye doctor might be more routine than appointments with the neurologist or cardiologist. If so, a community van might be helpful, or one of their caregivers could take them to the visits you don't need to attend. Be sure to check their community resources and explore options to lighten your load. There might be more than you think.
Above all, pace yourself and enjoy where you are right now. This is stressful, but it's also doable. Your parents' lives sound manageable (thanks to you), and if they can live at home with the assistance of caregivers and your weekly input, then be grateful and enjoy this living arrangement while you can. All the to-dos won't matter after they're gone. The time you spent together will.
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