Month: <span>January 2009</span>

One of the first commitments I made to myself after my wife was diagnosed with Multiple Sclerosis is that I wouldn’t allow it to impact my children in negative ways. That was eight years ago. They were five and eight years old at the time. Fortunately, my wife and I have been able to keep that commitment. My girls aren’t responsible for taking care of their Mom.

That’s not to say they have been untouched. I’ve written before about the positive aspects we’ve discovered through the years. I believe I’ve been much more present for my daughters with transportation and shopping. And I think they are both more compassionate than they otherwise would have had the opportunity to become. Unfortunately, what we’ve been able to do isn’t the case in every family.

It’s difficult for children who find themselves in the role of caregiver. One of the more important studies about the impact of being placed in a caregiving is “Young Caregivers in the U.S.

“Young Caregivers in the U.S.” presents the results of two studies into the prevalence of children who are caregivers and the impact their roles as caregivers have on them. The studies were conducted by Mathew Greenwald & Associates, Inc. for the National Alliance for Caregivers and the United Hospital Fund.

The studies had three main objectives: to determine the prevalence of caregiving among children in the U.S., to learn what role children have in giving care, and to learn how the caregiving role impacts the life of a child.

It isn’t a surprise that the more intensive a child caregiver’s role is in caring for a parent, the greater the impact is upon their experience of childhood. Perhaps much of what the report describes is best described as a role reversal in which a child is placed into a parental role to care for a parent or grandparent. Family theorists call a child in this situation a “parentified child”.

“Young Caregivers in the U.S.” paints a grim picture. “About six in ten child caregivers help their care receiver with at least one activity of daily living (ADL) (58%). ADLs include bathing, dressing, getting in and out of beds and chairs, using the bathroom or diapers, and feeding. Specifically, 30% of child caregivers help with one ADL, 16% help with two, and 12% help with three or more.”

Some of report’s conclusions: some of the results are mixed. Children engaged in caregiving are not usually doing it alone and are participating in the same educational and social activities as their noncaregiving peers. There are indications, however, that some children are experiencing distress that is manifested in behavioral and school problems and feelings of isolation and sadness. Boys in particular seem to have more difficulties than girls. Children in minority households with lower incomes are under particular stress and report receiving less help in carrying out their tasks.

Suggested solutions are more general in nature and include ideas about creating services to assist child caregivers. The report ends with an extensive bibliography of related resources.

Caregiver Tip: It isn’t possible in every situation because family life is different for each of us and because life is harder for some than for others. However, to the best of your ability, avoid placing children in caregiving roles.

MS Caregiving

The National Institute of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health, offers a well-written online paper titled, “Multiple Sclerosis: Hope Through Research”.

Reasons for Hope

It’s Sunday and here’s something I never thought I’d write about in this blog: crop circles, clergy without faith, and an alien invasion.

I watched Signs again last night with my teenage daughter. She had not seen it before. It’s a movie that leaves me wanting to know more about one of the characters. I wish he were my neighbor so we could sit out back, drink coffee and share our understandings. Throughout the movie, Rev. Graham Hess (played by Mel Gibson) struggles with faith and his expectations of God and life.

Rev. Hess is a priest who lost faith following the death of his wife. You learn through his flashbacks that before the movie begins, his wife was struck by a vehicle while taking a walk at night. She was pinned against a tree by the vehicle and lived just long enough to talk with her husband who arrived at the scene, very ministerial, in his black suit and white collar.

Signs is about the crisis of an alien invasion which follows the appearance of crop circles around the world. I’ll not pursue that line here, but the story is done well because the focus is on Father Hess, his two children, a young son and younger daughter and Hess’s younger brother who lives with him.

Against the background of the invasion, M. Night Shyamalan develops a story in which the crisis can work well as a metaphor for understanding how a family struggles with the invasiveness of a disease like Multiple Sclerosis. The invasion impacts every family member, they don’t know what to expect, emotions run high and family dynamics swirl as new information arrives (or doesn’t).

Any invasive crisis forces choice of action … do I fight, focus on what’s important, learn to care in new ways or get lost in longing for what was?

This is Hess’s crisis of faith: he once believed in signs. He knows his wife should not have been killed. God is good. Bad things are not supposed to happen. His wife died. He wants to feel that “whatever’s going to happen, there will be someone there to help”. He’s alone on the dark side of the moon without his wife and without his faith.

He explains the crisis in this way to his brother:

“People break down into two groups. When they experience something lucky, group number one sees it as more than luck, more than coincidence. They see it as a sign, evidence, that there is someone up there, watching out for them. Group number two sees it as just pure luck. Just a happy turn of chance. I’m sure the people in group number two are looking at those fourteen lights in a very suspicious way. For them, the situation is a fifty-fifty. Could be bad, could be good. But deep down, they feel that whatever happens, they’re on their own. And that fills them with fear. Yeah, there are those people. But there’s a whole lot of people in group number one. When they see those fourteen lights, they’re looking at a miracle. And deep down, they feel that whatever’s going to happen, there will be someone there to help them. And that fills them with hope. See what you have to ask yourself is what kind of person are you? Are you the kind that sees signs, that sees miracles? Or do you believe that people just get lucky? Or, look at the question this way: Is it possible that there are no coincidences?”

He longs for there to be no coincidences, but he can’t shake the thought that maybe he is on his own.

In a scene when his son, Morgan, is dying, Hess yells at God, “Don’t do this to me again. Not again. I hate you. I hate you!”

Hess is an emotionally honest man. But he can’t know yet that the asthma attack is a good thing. It turns out to be “more than coincidence”. (I’ll not spoil the ending for you.)

The crisis is resolved for Hess. He sees the event as a sign, evidence, that there is someone up there.

For some, having a family member with Multiple Sclerosis may bring no challenge to their faith. For those who struggle, though, Signs is a good movie. It provides an apt metaphor for thought and offers a story of faith renewed.

Theology of Caregiving

As a caregiver, you know your family finances are probably different than those of some of your friends. You have medical expenses most of your friends do not have. Chances are good that your friends’ families are dual income families. Yours is probably not. Caregiving often brings its own unique set of financial burdens.

Helpful information is available if you wish to learn how you might better manage your financial burdens, especially as they are compounded by the current economy.

TAKE CARE! – Self Care for the Family Caregiver is the National Family Caregivers Association‘s quarterly newsletter written to provide members of NFCA with information, insight, support and knowledge. It’s a great little newsletter with well-written articles.

In the current issue (Winter 2009), there is extensive information for caregivers about managing family finances in the current economy. And it’s good information. Articles include “The Costs of Caregiving”, “Money-Saving Tips for Family Caregivers”, “Protect Yourself Against Financial Fraud”, and “Tax Tips for Family Caregivers”.

As a member of NFCA, I receive a paper copy of National Family Caregivers Association’s TAKE CARE! newsletter. Mine arrived in yesterday’s mail. I’ve just checked the NFCA web site and this quarter’s newsletter is already available online in the caregiving resource section of the NFCA’s web site.

Caregiver Tip:

If you’ve not yet discovered the National Family Caregivers Association, take a moment to visit their website at I think you’ll find it to be a solid source of helpful information.

MS Caregiving Online Caregiving Resource Practical Tips