National Family Caregivers Association

Wednesday Jul 9, 2008

The Seesaw of Help and Independence-Three Stories By Nancy Carson

Do you often find yourself arguing with your parent, your spouse, or your child about giving and getting help? If your answer is "yes," take solace in knowing that you are not alone. At some point or another, or even throughout an entire caregiving relationship, issues surrounding giving or getting help are bound to take center stage. The nature of the relationship is obviously different when it is between peers than when it spans generations, but the underlying desire for independence and fear of dependency is the same no matter where you and your loved one fall along the age continuum.

Adult children caring for ill and aging parents get concerned about their safety, and wonder whether their finances and legal papers are sufficient to cover all contingencies. When the relationship is long-distance, adult children often feel guilty that they are not around, and try extra hard to make sure things are under control back home.

Spouses, because they reside together and have a partnering relationship, are apt to have a tug-of-war that is based as much on past history as on the present medical situation. Both convinced that their point of view is the correct one, spouses often have blinders on regarding their mate's motivations or suggestions regarding care and who provides it.

Parents always want to protect their children and parents of special needs children, even more so. Kids are kids and will inevitably test boundaries and the length of the tether that ties them to mom's apron strings. It is also possible that a disabled child will play upon his or her condition to get out of being a responsible person within the household.

Guilt, a tug-of-war between opposing wills, fear that someone you love is particularly vulnerable, the desire for independence, and the fear of being abandoned all play into decisions about how and how much you assist your loved ones, and how much you encourage them to do things on their own.

Aging Parents

I am a child of aging parents, and have recently been through a bruising struggle with them. About five years ago I realized that my father, then 82, who had been unusually youthful and active, was beginning a downward health spiral due to rheumatism, back surgery, pain, and prostate cancer. As the ugly synergy began, I was determined to help. I was going to share my knowledge of modern medicine and care options to make their lives easier. I also planned to use the opportunity to resolve a few remaining family conflicts before it was too late. The fact that my parents lived in Seattle and I lived 3,000 miles away, in a suburb of Washington, DC, did not deter me a bit.

By the time my dad died in June of 2001, I had learned that good intentions don't always bring about good results. A few weeks before my dad's death I had made a final attempt to convince my parents that having help at home would make both of their lives easier, and that hospice care would lift burdens for both of them and provide spiritual support when they needed it. When my requests and heartfelt efforts were rejected one more time, I finally accepted that my parents were not going to deal with the current crisis the way that I thought best.

Eventually I came to understand that my desire to help them was actually making their lives more difficult. Their need to retain control, make their own decisions, and be responsible for each other was much stronger than their need for help with the tasks of daily life-no matter how arduous those tasks had become.

Each time I had arranged for services, my parents fired the helpers as soon as I went home. They cancelled a membership I had set up for them with an organization that provided bonded employees for the elderly, and they steadfastly refused to accept any assistance, even from long-time friends and neighbors. My mother, who always rushed to help others and often remarked about the burdens her friends carried, balked at having someone come in every two weeks to do the heavy cleaning, despite the fact that she was taking care of all my father's personal needs and sleeping only a couple of hours a night.

She complained that the visiting nurses didn't come on a predictable schedule. She refused to even call 911 when my dad fell. She refused to ask friends to stay with my dad even though she felt trapped and guilty if she left home for more than an hour. Once I heard my parents on the phone complaining to a cousin that I had no sense of money and was trying to bankrupt them by forcing them to get help.

The reason my parents didn't want to accept help had a great deal to do with that basic American value, independence. My parents not only inherited the strength of the pioneers, they raised themselves from poverty through the Great Depression, bore up during World War II, and made a fine life without benefit of family help and with very little education. They had done it on their own up to this point, and they were determined to continue relying only on each other now.

Parents are used to giving advice to their children, not taking it from them. Parents want to protect their kids, not reverse that relationship. And of course, the patterns that we had always had were still present. At one point in the final months when my mother tried to carry my large suitcase, I asked her why she was doing that. She replied, "I have always been stronger than you."

Spouses

In the last issue of TAKE CARE! NFCA president and co-founder Suzanne Mintz talked about the difficulties she and her husband Steven had resolving their conflicting views regarding giving and getting help. She said:

"Some things are obvious and yet that doesn't mean we know how to deal with them. For instance, we all know that relationships, by definition, are about the interactions between at least two people. Caregiving is about a special type of relationship, a relationship in which one person needs care and another is called on to provide it. It is about loss and challenges and finding a new balance. It's about recognizing that although one person's health and ability to function independently was the catalyst for making yours a caregiving family, everyone in the family, especially you, the primary caregiver, has been deeply affected as well. A successful caregiving relationship requires that caregiver and receiver recognize that each of you has needs and rights and feelings that have to be considered, honored, and addressed in an equitable way."

If you would like an email copy of her entire article contact NFCA at info@thefamilycaregiver.org and write Relationships Article in the subject box. If you aren't online and want a paper copy, call NFCA at 800/896-3650.

Special Needs Children

Caregiving is indeed a special type of relationship. It requires us to see life through someone else's eyes and understand the impact that the illness or disability is having on his or her life. For a child who has never known life without a disability, the situation is unique. Parents must find a way to achieve balance between helping their children become as independent as possible so that they can function in the world long after the parents have died, and protecting them from being hurt, teased, or even abused.

Emily Larkin has spina bifida, a developmental abnormality of the spinal chord that affects her ability to walk. When she became a teenager, having to get help from her parents was necessary but embarrassing, as she struggled to find her own identity while testing parental limits of control. Emily was used to having things done for her. In fact because she was so used to being protected, she didn't understand why she needed to take on household responsibilities like her older brother and sister did when they turned thirteen. Things were hard enough for her given her disability, she complained to her mom. She shouldn't be treated like everyone else because of it.

That's not quite how Emily's mother Colleen saw it. She knew that if she didn't get Emily to pull her own weight, to learn that even though she has a disability she also needs to be a responsible person, adult life would be very difficult and ultimately unsatisfying. Emily wanted help and responsibility on her own terms. Colleen wanted Emily to grow up to be as independent as possible.

In order to get Emily to take on typical chores, Colleen insisted that she be responsible for taking her clean clothes from the laundry room to her bedroom and putting them away in her drawers and closet. The only way Emily could do this was to crawl. "She made a scene each time and accused me of brutality," Colleen said, " and my friends told me I was monstrous. I almost gave in several times. After a while Emily stopped complaining and just did her job. Today Emily is finishing college and living in an apartment on her own. If I'd kept on helping her with everything that was hard" Colleen notes, "she'd still be living at home and depending on me for everything."

Nancy Carson is a freelance writer and frequent contributor to Take Care! She lives in Alexandria, VA.