Tag: <span>multiple sclerosis caregiver</span>

Published April 1, 2010 by

Finding Caregiver Support

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

caregiver support caregiver support group MSAA multiple sclerosis caregiver NMSS sunday school class support for caregivers

Published May 17, 2008 by

Make Time for You

I hope these first few paragraphs don’t sound like a whine. They’re not because I know a lot of people whose schedules are a lot rougher than mine. My wife’s relapsing-remitting MS is managed well and I have nothing to complain about. But I do want to use comments about my busyness lately to share six important points about making time for yourself.

My schedule is usually more forgiving than it has been lately. I work as a Director of Information Services. We’re building a private, statewide network and implementing new proxy servers, firewalls, switches and network filters. To make it happen, I’ve worked longer hours than usual this past month and all night a night or two each week.

Several years ago I promised myself (and continue to promise myself) that their mom’s Multiple Sclerosis will not interfere with my daughter’s childhood and adolescent experiences. My youngest plays softball two or three times a week, my oldest sings in the high school choir, all state choir, and church choir. They travel. They have friends spend the night. They go to parties, movies, etc. In other words, they’re having a normal adolescent experience.

In the last week at home, I’ve grilled for guests, cleaned, chauffeured, delivered, mowed, done my state taxes, transported, clipped hedges, been a dugout coach and been to doctor’s offices. I’ve cut a wall out of the hallway and built a linen closet. I could go on, but it would only be to support the fact that I’ve been too busy to have time for myself lately. While mowing this morning, I stopped the mower and stretched out on the lawn in the shade of an Elm tree to rest for a few moments. The grass was cool, the breeze blew up the hill, I almost fell asleep. It was the first, pure “me” time I’ve had lately. It was only for a few minutes, but it felt good.

Few people with responsibilities for others have all the time they wish for themselves. It’s part of the deal that comes with responsibility. And the tips below apply to all caregivers: young moms, family caregivers, hospice workers, anyone who care for another.

Here are a few tips to help you make time for yourself:

1. Understand that making time for yourself is necessary

As a caregiver, there will always be periods of time where you find yourself overwhelmed by the tasks set before you. And for brief periods, it is possible to do it all — for brief periods.

But you can’t do it all, all the time, without making time for yourself. It’s impossible.

2. Making time for yourself requires effort

It won’t just happen, so don’t expect. You must make time for yourself. It requires effort. Perhaps you will schedule a set hour each day and protect it with all your might. Or maybe you’ll arrange an afternoon off each week. However you do it, it will require effort to schedule and protect your own time.

3. Making time for yourself may seem selfish.

A caregiver can be so busy caring for another that not caring the full 24 hours a day seems wrong. It’s not. Don’t let yourself feel guilty.

4. Determine what your real “Must Do’s” are.

Life is filled with things we think we must do. Many of these activities are real “Must Do’s”. Bad things will happen if they are not done. For example, I must deliver my oldest child to school in the mornings. I must shop for groceries. I must pick up prescription refills. You know what the real “Must Do’s” are in your life.

Some of the “Must Do’s”, though, may not be real “Must Do’s”. They may only be things that would be nice to accomplish. For these, think clearly about them and then call them what they are, “Good To Do’s”. It would be good to mow the hill this afternoon. It would be good to attend the neighborhood ice cream social. It would be good to read a chapter in the new book. It would be good to do a lot of things that you don’t have time for.

First, do the “Must Do’s” in your life. Then, if you have time to spare, knock out some of the “Good To Do’s”. Or do just one of them.

5. Avoid excessive volunteering.

Notice the word “excessive”. I am a strong believer in the value of volunteerism. Many organizations would be unable to accomplish their mission if it were not for people who volunteer to help. The key word here is “excessive”. And only you can determine at any point in your life what excessive means to you.

However, if you don’t have time to take care of your “Must Do’s”, you certainly won’t have time to volunteer for additional tasks. If you can get your “Must Do’s” done and can make a volunteer task one of your “Good To Do’s” then go for it.

It’s helpful when you volunteer to first set the boundaries around your time. “I can volunteer for 1 hour a week, but no more.” If you set the boundary up front, you won’t feel guilty about setting it later when you’re overwhelmed. Volunteer organizations (with the best intentions) can be incredible time suckers. Your time boundaries are important.

6. Take time off.

Most employers offer vacation leave as an employee benefit. They do it because they know employees are better able to do their tasks if they are refreshed and if they can re-create themselves from time to time.

Caregivers must take advantage of this bit of wisdom from the world of work. Take time off. Make arrangements for friends or other family members to fill in on your “Must Do’s”. Set aside your “Good To Do’s” and take time off.

Make it your time. Do what you need to do to pull yourself back together.

As I wrote in my very first post, put on your own oxygen mask first. If you passout because you don’t take care of yourself, you’ll never be able to care for another.

Caregiver Tip: Make time for yourself.

Caring for Yourself

multiple sclerosis caregiver time management