Finding Your Voice, Defining Your Role

Denise
Karen has cared for her mother-in-law for almost two years. She does it for her husband--and in spite of her mother-in-law, Alice.

Alice made it clear from the start that Karen was not the girl she would have chosen for her only son, Tony. She made it clear throughout their 30-year marriage, at holidays, special occasions and during their weekly visits. Karen did her best to withstand the criticism and intense dislike, but she would be lying if she didn't admit that her mother-in-law's constant nagging had affected her marriage.

When her mother-in-law had her stroke two years ago, Karen couldn't believe that she was the one who took on her mother-in-law's care. Her mother-in-law had complained about her cooking, nagged about her child-rearing ideas, and criticized her for having a career outside her home. Ironically, Alice now has to endure Karen's cooking daily (three times, actually). As Karen looks back, she wonders, if she knew then what she knows now, would she still have taken in her mother-in-law? Sometimes Karen curses herself for the answer.

Karen's day is now filled with laundry, sponge baths and pureed meals. At first, she tried to keep up with most of her activities, as well as her part-time job. But, as the days and months went by, she just found it too difficult to do it all; she dropped teaching the night classes at her community college, she quit her part-time job in the school district, and let her membership at the local gym lapse. Soon, she even put attendance at Sunday morning mass on hold.

When she first made the decision to move her mother-in-law into her home, she did it because she couldn't face her husband's face if she said, "No, let's find a nursing home for her." Her husband had been devastated by the stroke's affect on his vivacious and energetic 75-year-old mother. She knew that an option other than caring for his mother in their home would be unacceptable. So, even though the stroke has silenced her mother-in-law's voice, her influence in their house is as strong as ever.

When Karen tries to tell Tony how hard it is to care for his mother, Tony just smile and hugs her. "Oh, come on, honey, it's not so bad, is it? You do a great job. You raised the kids on your own. I'm sure you can do this, too. Just stick with it--it'll get easier."

But, as the months go by, it only seems to get harder. When Medicare benefits end, so do the home health aides and therapists. And, so does Karen's opportunity to run to the store, or read a book in her bedroom, or chat on the phone to her daughter. When Karen asks about hiring private help, Tony wonders why. "Geez, Karen," he says. "You do a great job. Why would we want to spend the money for someone who can't do a better job than you?"

Soon, Karen seems to spend all her time in the house. She bathes her mother-in-law every morning, feeds her three meals and two snacks daily, turns her in bed every two hours, changes her incontinent briefs, and launders soiled clothing and sheets after soiled clothing and sheets.

When her mother-in-law first moved in her home, Karen spoke to her, watched movies with her, listened to audiotapes with her. Karen joked with her kids that now that Grandma couldn't talk, she was glad to spend the time with her.

But all that has changed. Karen barely speaks with her mother-in-law, almost inaudibly whispering, "Good morning". Her chores are performed impersonally. In her head, Karen thinks of her mother-in-law as "The Women Who Ruined My Life".

Yikes! What a horrible story! You can see that Karen endures more than just one bad day of caregiving with her mother-in-law. It's all bad days!

This story is important because it illustrates that problems left unsolved early on in a caregiving career can gain momentum--and become such a monster that it becomes caregiving. To Karen, the monster (the unsolved problems of her relationship between her mother-in-law and her husband) and caregiving are intertwined. She can't slay the monster because the monster is really her, her husband and her mother-in-law. Caregiving was just the catalyst to making the monster bigger than life--and almost impossible to conquer.

As impartial listeners to the story, we can see where Karen was heading from the start. Karen had always struggled to find her voice with her mother-in-law and her husband. Unfortunately, caregiving seemed to empty her voice completely. As the riggers of caregiving intensified, Karen found she had to make sacrifices--personally and professionally. Caregiving affected all areas of her life--in ways Karen viewed as nothing but negative. Who could blame her for tagging Alice as "The Woman Who Ruined My Life"?

So, what's Karen to do? Her bad days of caregiving have spiraled out of control---and a "crash and burn" is on the horizon.

Finding her voice again is critical to her survival. First, she should explain to her husband that caregiving is hard and that she needs help. It's not like raising children. It's not about who can provide the best care. It's about her sanity--and her survival. She can't make any more sacrifices without reaping some benefit.

Although returning to her life before caregiving is unrealistic, Karen can choose what aspects she would like back: Teaching night school, working part-time, spending more time with her children and friends. Perhaps teaching night school again is a possibility--her husband is home at nights and could take over the caregiving regime. She could contact local organizations to find volunteers who could spend Sunday morning or Saturday evening with her mother-in-law so that she can attend mass again. And, most important, she could expect regular help from other family members; in addition to her husband, her children and grandchildren could provide respite.

Most important, Karen needs to learn how to speak up for herself---and that's something she probably can only learn with professional help. Her priest may be of help---either counseling her or offering suggestions on counselors that can help. For Karen, her future happiness hinges on being able to protect her interests and needs.

Really, we could all have a Karen hidden within us. The bad days of caregiving are often a symptom of a greater problem. To keep you on track and minimize your bad days, keep your checklist of caregiving necessities on hand:

1. Welcome help. You're probably the best caregiver in your family--but you're not the only one! Your spouse can read to your care recipient on a Saturday afternoon so you can get out with friends. Your siblings can provide financial support so you can hire home health aides--and give yourself a regular break from laundry, cooking and cleaning. Your adult children can spend an evening with your care recipient so you can enjoy dinner and a show. Your out-of-town relatives can telephone your care recipient regularly so you're not the only one providing social interaction with your care recipient. And, ask for help---don't wait for others to offer. You'll wait forever!

2. Define your caregiving role---don't let it define you. Enjoy activities on a regular basis that remind you of you--your interests, your ideas, your opinions and your values. And, make adjustments in your caregiving duties that allow those activities--daily, weekly, semi- monthly. Whatever you can manage!

3. Make sure caregiving in some way affects your life in a positive way. Reap some benefits, rather than just making sacrifices. Has caregiving taught you about the positive power of giving? Have you gained an understanding about your care recipient that you never had before? Have you learned about patience and virtue? Have you learned how strong and successful you can be--no matter what the obstacles or stresses?

4. Seek a support system---and nourish it. Does a relative, friend or caregiving acquaintance support and validate your efforts? Everyone needs a empathetic ear and sympathetic shoulder--especially caregivers. In turn, be supportive to other caregivers.

5. Make sure your motivation as a caregiver is honest and healthy. For instance, in your caregiving, are you hoping to right the wrongs of past relationships? Is that realistic? And, most important, is that healthy? Or, are you a caregiver because you understand and appreciate its importance---to you and your family. Keep on top of your motivation---and if you find yourself slipping into the motivating ways of a martyr, pull up and re-examine your role. Is it best for you, your care recipient, your family?

6. Educate yourself about your care recipient's illness or disease. Learn how to handle difficult behavior, provide hands-on care and administer treatments. Ask your care recipient's physician, your home care workers and organizations such as the Alzheimer's Association for suggestions and information to make you a well-informed, trained caregiver. Knowledge is the best way to minimize your frustration and uncertainty.

The bad days of caregiving are a given---but they can also be a reminder. What's causing your bad days? And, what can you do to minimize them? You'll be surprised at the power you have over your bad days!

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