Dear Family Advisor
We're not the kind of family that talks about personal issues. But my mother's denial about my father's Parkinson's is keeping him from getting the care he needs.
Last updated:December 08, 2008
My father has Parkinson's and shouldn't be left alone. My mother is working full-time and taking care of him. We (the adult kids) are concerned that she's in over her head, but she's in serious denial about the state of things and even about my dad's disease.
We think she should be investigating options, making plans to get help, and considering assisted living as the next step for him. We're happy to help, but given her level of denial, it's a challenge to get her to talk about it with us. We're generally a "keep it to yourself" kind of family, so opening a discussion is all new territory for us. Any advice about how we should approach the topic or recommend ideas to our mom?
Figuring out how to provide help to parents who don't want it or don't think they need it is one of the biggest challenges of caregiving. It sounds as if your mom may have held herself together so far by being in denial, so opening up to you and letting herself be vulnerable are especially scary to her right now.
This strategy may have worked for her thus far, but you're wise to see that it will hurt her and your father if it continues, so it's time to talk. Many families have communication issues. It may take everyone a little while to open up, but you won't know what's going on or how to help if you don't extend yourself and slowly but firmly press for more open communication.
Try first to see things from your mother's perspective. Coming to grips with a disease like Parkinson's means coming to grips with many difficult facts. It's anguishing for her to see her mate, the love of her life, the person she's depended on for so many years, losing his strength and vitality. It means facing his and her own mortality and accepting that her life will never be the same. As long as she can stay in denial, she can avoid seeing these things.
She may also be taking her cues from your dad. Men often struggle with being taken care of, and it may be embarrassing for him. In my case, my mother had Parkinson's, and she didn't want me to mention it to anybody -- for years. She'd only mention it when we were alone and even then called it "P.D."
At the time, I didn't understand why. There's no shame in getting sick or a having a disease. But looking back, I see that her pride was a way of fighting the disease. She wasn't ready to give up, and I'm glad she didn't. She was a fighter, and that helped her stay strong. But as her daughter and caregiver, I had to face the realities.
You can deal with this situation on several levels by getting more involved physically and emotionally in your parents' lives now. Do you or any of your siblings live nearby? Do you have flexible hours or work from home? Can you coordinate so that some of you stop in and help your dad or at least check in on him regularly?
We all have busy lives, but to ascertain if he needs more consistent care, you need to come by often and at all hours of the day to see if he's taking his medication regularly, feeding himself, and can make it to the bathroom on his own. It will be more difficult for your mom to deny facts if you're there witnessing them. In addition, your parents are more likely to begin sharing their concerns and day-to-day issues if you're there.
So begin to make "backup caregiving"-- for both your dad and your mom -- part of your weekly routine. Is there a hobby or a class you can go to with your mom? How about shopping together at a farmer's market once a week? Does your dad like to fish or play golf? Having Parkinson's doesn't necessarily mean he can't still get out and enjoy life. Probably any excursion out of the ordinary will improve both of their spirits and help them relax.
Opening up may come naturally on such excursions. If not, ask some gentle questions. Encourage each of them to "get things off their chest" when you're alone with them. Ask your father what he thinks he needs. Parents often withhold from their children because they don't want to burden them, but let them know that you're an adult now and you want to help. Perhaps you haven't really listened to your mom before. Do so now. I guarantee that it will ultimately be a relief to her to open up, no matter how much she thinks she doesn't want to.
At the same time, get to know more about caregiving and the resources in your parents' community. If you really think assisted living is necessary, visit some places. Primary caregivers can be exhausted and testy. They have a lot on their plates physically and emotionally. Help Mom out by sorting through the vast amounts of information out there, so that you can assume some of the caregiving duties or suggest some resources. Don't be too quick to dump your research on her doorstep, though, or she'll probably ignore it. Give her some time to process it all.
If your parents are committed to keeping your father home, you may be able to put together a patchwork care plan, at least for a while. If your mom wants to continue working to be "out in the world," or needs her job for financial reasons, perhaps you children can pitch in or set up other services to fill in when she's not home. Check with your area's agency on aging or senior care services for information on adult daycare or private certified nurse assistants.
What if you do all this and your mom still won't budge? Then you'll need to press the point. If your dad isn't getting proper care, you need to make your mother see that. Just reiterate to her at the same time that you're in there with her for the long haul. I'd strongly suggest that you encourage her to join -- or even accompany her to -- a support group for spouses. Even if she doesn't talk, it will help her tremendously to see other women in the same situation.
No doubt you'll feel uncomfortable at first, taking the lead in developing this new family dynamic. It may feel like you're prying into your parents' business, but you really aren't. Many of us need help from others in coming to grips with realities like these. Caregiving really is a family affair.
And there's a lovely blessing to all of this. We become close to the people we need. We feel connected when we open up our lives and hearts. So in a way, this is an opportunity for your family to become closer and to show just how much you love each other.
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