February 13, 2015

A Caution for Caregivers: Treat Me Like an Invalid and I'll Become an Invalid

So far, I haven't needed much help handling normal everyday tasks. But as I approach my 86th birthday -- and the sixth anniversary of my Parkinson's diagnosis -- I can see the handwriting on the wall. I'll probably need increasing help from family members, friends, and -- eventually -- paid caregivers.

As a result, I think a lot about the relationship between patient and caregiver. I spoke recently with a friend who has been both a volunteer and professional caregiver. She told me the biggest problem she sees is the tendency of family members to treat their elderly loved ones as invalids. The result, she said, is that patients become invalids. My friend often encounters tensions with family members when she comes in and gets granddad up from his wheelchair and out for a walk.

"When Caregivers Care Too Much"
That's the title of an article in Psychology Today that starts off with this example of "over caring":
Meet Alvio and Jennifer, They were married right after college, some 45 years ago, When Jennifer learned that her darling Alvio had emphysema, she was devastated. Like most wives, Jennifer immersed herself in her husband's care. Jennifer knows a good wife doesn't let a sick husband do things himself. So even though Alvio is still able to do most everything and doesn't need much help, Jennifer does everything and takes care of all of his needs. After all, his life is at stake! But Jennifer is so caught up in his care that she doesn't notice its negative effects. 
Avoidable damage may appear without notice. Now, her life is buried in a list of to-dos for Alvio. She no longer enjoys her favorite activities, partly because she doesn’t have time and partly because she doesn’t have the energy. She won’t accept help from anybody. She thinks it will take too long to give directions, and others won’t do things right anyway. Yet she is irritated with people who don't offer help.
She is beyond exhausted, and is angry—with Alvio, with herself and at how her life has turned into something she hates. And she is harming Alvio. Her anger spills over into his care and she is often abrupt and insensitive with him. In subtle ways, and with the best of intentions, she does further damage because her over caring turns Alvio into a physical as well as an emotional invalid. You see, if you do everything for your husband, you take away any chance he has to still feel like a man and to feel proud of himself and to stay physically fit. You stop being his wife and you become his mother-–and not a very nice one.

Codependence and Over-Caring
In AA meetings, recovering alcoholics often talk about codependence and enablers. Enablers are people who do for us what we should do for ourselves, allowing us to continue our alcoholic behavior as they clean up our messes and take care of the things we should do. As a result, these enablers delay our coming to terms with the first step needed for recovery -- admitting that we are powerless over alcohol and that our lives have become unmanageable.

The caregiver who over-cares engages in similar behavior.

Giving Less Is  More
Striking the right balance in caregiving isn't easy. But here is a guiding principle:
As a caregiver, your highest goal is to give the person you are caring for the power and permission to be in control of his or her own life as much as possible. Every act your loved one makes to maintain independence is a victory for you as a caregiver.
Here are some things you can do to empower the person you are caring for to do things independently:
  • Let the person make as many decisions as possible. For example, let him decide what to wear, what to eat, or when to go to bed. Help him maintain as much control as possible.
  • Simplify. For example, if you are caring for someone with mild dementia, divide complex tasks into simpler steps. First, get out the cereal box. Next, get out the milk and the bowl, and so on.
  • Make it easy. One of the most productive things a caregiver can do is to make changes in the person's home and provide tools that will allow her to do things without help.
  • Allow for mistakes and less-than-perfect results. The hardest thing about letting someone do something without help is knowing that you could do it better or faster. But mistakes are okay.
  • Reward both the effort and the result. Help the person feel good about doing things on her own.
  • Give the person responsibility to care for something. Studies show that nursing home residents who are asked to care for pets or plants live longer and become more independent.
  • Match tasks with abilities. Identify the person's skills, and try to match them with tasks he can do on his own.

A Concluding Thought
I'm not interested in living into my 90s, if it means I must assume the "default position" -- sitting in front of a TV all day long.

Then I think of three individuals I know who are maintaining quality lives well into their mid-90s. It's probably no coincidence that they share two things in common:
  1. They're women.
  2. They prefer to live alone.


Anonymous said...

Dear John, I have wanted to write to you since I began reading your blog after receiving a diagnosis of parkinsons in September of 2013. You have been so helpful to me in so many ways. There are always so many questions and dead-ends with this disease. More than anything, I feel that we all need some sliver of hope to hold onto and often, it seems in short supply . I wanted to thank you for your wonderful efforts to reach out to all of us and offer the benefits of your experience. You do more good than you could possibly know.

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