Month: <span>May 2008</span>

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

Skilled doctors are busy people and tend to be very intelligent. Some of the mystique that surrounds doctors places them above most others on the social ladder. Not only that, but doctors tend to be “experts” in the very thing you need help with. It’s difficult for many people to think of doctors or talk with doctors as people.

And there are some doctors who actually encourage this problem. I imagine everyone knows of at least one example of a doctor who acts as if he believes he’s a god. “Here’s the answer. Don’t question me,” is their message. I know a plumber with the same attitude, though, so it’s not just doctors who may relish an “expert” role.

How does one talk with a doctor?

Here are a few important tips I’ve found to be useful in talking with my wife’s doctors.

First, remember this: doctors are just like other people. Behind their clinical white coat, they have the full range of human emotions to deal with – hope, sadness, stress, joy, frustration, etc. They have financial stresses and family stresses. Doctors are tired. They often feel impotent when they can’t effect a cure or relief. They live with hope and fear like all of us. And they participate in the medical struggles of a crowd of people. Being a doctor carries enormous ethical, financial and legal responsibilities. It’s a tough job.

Second, keep in mind (even though you’re paying for your time with the doctor) other patients are in the waiting room. Expect your doctor to be personable and informative, but don’t expect your doctor to talk with you about the weather or to be your “buddy, friend and pal”. Respect your doctor’s time.

Third, ask questions and ask for clarification when you need it. Good doctors want their patients to fully understand their treatment and disease. Don’t be afraid to ask, “can you explain that to me in everyday terms?”

Fourth, remember your doctor is not the only expert in the room. You know about you. You experience the side effect of your medications. You know where it hurts. You are the expert on you. Expect your doctor to know a whole lot more than you about treating MS, but your doctor should expect you to know more than him about how MS is treating you.

Fifth, laws regarding confidentiality of patient information may limit what a doctor can or will tell a caregiver. Without the patient’s permission, do not expect a doctor to talk with you in detail. If you are the patient, however, expect your doctor to share freely the information you request.

Sixth, do your own research. The internet is probably the best invention of our lifetimes. While much of the information available on the ‘net is questionable, never before have patients had access to so much good information about medicine. You can search the web for new research, medication information, reports about doctors and clinics, helpful tips for living with Multiple Sclerosis … there a world-wide web of information available.

Seventh, share research with your doctor when you believe it can be helpful to you. One way to initiate a conversation about treatment issues like this is to print the web page describing research you’ve found and share it with your doctor. Most will be thankful that you’ve shared information and it will give you both a reference point to start a conversation.

Of course, in addition to these, I’m sure you can think of other tips to make it easier to talk with a doctor. But I’ll end with this – if your doctor is too rude, too “clinical”, won’t talk, etc. you may want ot find a better doctor. There are far too many doctors who are caring, skilled, and informative to tolerate the rare MD who promotes the “god complex”.

Finally, a long relationship with a great doctor can make living with MS easier. If you’ve got a good patient-doctor relationship, appreciate it and thank your doctor!

Caregiver Tip: MS patients and caregivers must communicate with their doctors. There’s no better way to facilitate a good relationship and make living with MS easier.

Practical Tips

“Follow the money,” is a truism that many appreciate.  Often, simply knowing who paid for something gives one a good idea of who “owns” the message.

So here’s the logical question for readers to ask when they read, “Who pays for this blog,”  In fact, this is a question you must ask of any information source, “Who is paying to present this information?  Who funds this message?”

The quick answer is for is, “I am.  I’m Rick Wheat.  My wife has Multiple Sclerosis and I’m an MS caregiver.”  The financial costs of maintaining this blog (and most blogs) are minimal … only $1 per month for hosting and a few more bucks a year for the domain name.

Why is it important for readers to know who pays for  Because you need to know that no one is paying for advertising here and no one is paying me to write content.  I write what I wish, about what I think may be helpful, and about what I’ve found to be helpful to me and my wife.  I write it because I want to offer support to others who care for a person with Multiple Sclerosis.

A nice thing about not being paid for my efforts here is that I can write when I wish.  Follow long enough and you’ll notice that sometimes I write frequently, other times I take frequent breaks.

Now that you know this blog is not a commercial endeavor, but about my own personal experiences, I hope you’ll share what works for you.  If you have something to offer, sign up and share your comments!

Online Caregiving Resource

Here’s news that gave me reason to create a new category: Reasons for Hope

Driving home for lunch yesterday I caught just enough of Paul Harvey’s broadcast to hear something about Prozac, Multiple Sclerosis and reduced number of lesions on MRIs. I mentioned it to my wife when I arrived home and then searched the web for more information. (I started at, but didn’t have time to relisten to the broadcast. It would be great if the broadcast transcripts were available on Mr. Harvey’s website – and maybe they are, but I couldn’t find them.)

Here’s what I found:

In Fluoxetine Show Promise in Multiple Sclerosis on the web site, the author describes the results of a small study which were presented at ECTRIMS 2007: 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis. The article is dated October 16, 2007, so we’re not dealing with “new” news.

I think the reason Paul Harvey’s broadcast mentioned it is because the study is about to be printed in Journal of Neurology, Neurosurgery and Psychiatry.

The study conducted by Jop P. Mostert, MD, and his colleagues at the University of Groningen in the Netherlands, showed a reduction in new gadolinium-enhancing lesions in the study’s patients with relapsing-remitting or relapsing secondary progressive MS who received Fluoxetine (the generic name for Prozac).

Read the article for the study’s details or search the web for Prozac + “Multiple Sclerosis” for additional information.

Here are some of the reason I created the “Reasons for Hope” category for this article:

  1. This study was not funded by any pharmaceutical firm. Funding wasn’t an influence.
  2. Fluoxetine/Prozac has been around for a long time and is generally well-tolerated (unlike other MS treatments).
  3. This isn’t a “new” new thing – Dr. Mostert’s report mentioned that, as early as 1991, psychiatrists were reporting that fluoxetine/Prozac was having a positive effect on MS patients.
  4. A list of Multiple Sclerosis Drug Treatments indicates the medication is already prescribed to MS patients for “depression without anxiety“.  And, as mentioned in the study report, psychiatrists were reporting positive effects of Prozac on MS as early as 1991.

Remember, I’m not offering (nor am I qualified to offer) medical advice, merely reporting what I’ve heard on the radio and read of Mostert’s study. Talk about this with your neurologist.

Caregiver Tip: Do your own research on the impact of Prozac on MS and talk to your doctor. It may be something worth considering.

MS Treatment Reasons for Hope