Month: <span>March 2010</span>

During the last few weeks, I’ve been asked by caregivers (via this blog’s contact form) for help finding support for themselves in their local communities. I take these requests seriously.

In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.

While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.

1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.

2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.

Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.

3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.

For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.

4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.

5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.

Caring for Yourself MS Caregiving MS Support Groups

Hello Cancer, Goodbye Marriage: A new study shows that men are more likely to ditch their sick spouses, should really be titled, “Hello Illness, Hello Marital Stress”.

The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness”. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”

While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.

Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.

I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.

And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment:

Caring for Yourself Living with MS MS Research

Mark Twain said something about cats and hot stoves. “We should be careful to get out of an experience only the wisdom that is in it – and stop there; lest we be like the cat that sits down on a hot stove lid. She will never sit on a hot stove lid again – and that is well; but also she will never sit down on a cold one anymore.

If you care for someone with Multiple Sclerosis, you know life can be like a commercial kitchen with all the burners lit up. But, for sanity’s sake, its important to follow Twain’s advice and not expect every stove to be hot. Another saying (related to paranoia) is, “just because you worry about something, doesn’t mean it won’t happen.”

Me, I’m not a worrier by nature. But when I do find myself worrying about something, it’s usually not something I’m only imagining might happen. When I worry, it’s usually about things that have actually already happened, things that I know could happen again with similar or even worse consequences.

A good example occurred last week as I was driving home for lunch. The drive takes me just a few minutes, but on the way home, I thought about the fact that I had been in meetings all morning long and hadn’t talked with my wife. She had still been asleep when I left the house to drop the girls off at school. After dropping them off, I went to work and straight into meetings. We had not talked all morning! Then, an almost positive thought, “Of course, she’s alright.”

During the next few minutes as I drove home, I worked through a small list of things I worry about when we’ve not touched base frequently enough: What if she fell and knocked herself out? What if she were cutting veggies and cut herself? What if she stumbled in the yard walking Einstein? What if she got her medicines mixed up?

I’m fairly rational and I find that to be a useful characteristic for managing these little worries. First, I go to statistics. I think about probability and rationalize like this, “She’s fallen in the last 12 months, so the odds are against that.” Second, I go to what I know about her habits and behaviors, “She never cuts veggies in the morning,” or “she has her meds so well organized, she can’t mix them up.”

But even with those effective “anti-worry” techniques, I’m always so relieved to arrive home and find she’s fine, that I’m grateful for the grace and enjoy a longer “welcome home” hug. And, “besides”, I tell myself, “nothing ever happens if I worry about it!”

Caregivers Tip: It’s human nature to worry about things that might happen to a loved one. Think of little worries as reminders to fix what you can to prevent the thing you worry about from happening. If you worry about a fall in the shower, install secure, grab bars and antislip strips in the shower. And find your own brain games for dealing with little worries. Because you’re going to have them. Try thinking rationally, using probability, and considering what you know about your loved one’s habits and behaviors.

Caring for Yourself Practical Tips