Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”

The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, “Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands“.

Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.

Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.

I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!

Fortunately, the room I crashed was empty and no procedures were in progress!

I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”

Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

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.

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: http://www.newsweek.com/id/223079/output/comments

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.

Burnout – a state of mental, physical and emotional exhaustion — leaves people feeling hopeless about the future. While the focus of the article is on workaholism, the tips from therapists on staying healthy in stressful environments are perfect for caregivers.

For example, one tip is, “Nurture your spirit. Do something just for yourself, whether it’s listening to music, exercising, getting a massage, reading or writing in a journal.” It’s a quick read that may remind you that putting on your own oxygen mask first is important.

Caregiver Tip: Remember to keep yourself in good health, clear minded, and emotionally healthy. You cannot care for others if you do not care 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.

“Eye test peers into heat-related multiple sclerosis symptoms” on the University of Texas Southwestern Medical Center web site describes the experiment which was published in the March 25, 2008 issue of Neurology.

Dr. Frohman serves as the Director of the Multiple Sclerosis Clinical Center at UT Southwestern.

Visit http://www.utsouthwestern.org/neurosciences to learn more about
UT Southwestern’s clinical services in neurosciences.

Information about the Multiple Sclerosis program at UT Southwestern in Dallas, Texas is available at:
http://www.utsouthwestern.edu/patientcare/medicalservices/neuro/ms.html

From the MS Program’s web page: “Recognized as a world leader in the research and treatment of multiple sclerosis, the Multiple Sclerosis Program at UT Southwestern Medical Center serves more than 3,900 patients with an all-encompassing program equipped to handle the wide range of symptoms that normally makes the disease difficult to treat. The overriding philosophy of the clinical care mission is to treat the whole patient with a team approach.”

My oldest daughter participated in the conversation saying, “If Daddy dies early, I think Mom should remarry so she’ll have someone to take care of her.”  I agree.  And while I hope I outlive her, if I don’t, I want her to remarry (but only if she finds a man who loves her and my girls as I do).  There are a lot of conclusions one can draw from my daughter’s comment, but the one I’m thinking of today is that I should really take better care of myself!  (The conversation also points out the importance of family caregivers having enough life insurance to ensure care for an MS patient who remains.)

Now when it comes to longevity, I do have several pluses.  I have a low stress job.  I don’t drink, smoke, do drugs or overeat.  I have no known physical ailments.  My checkups are always good.  I’m a safe driver, wear my seatbelt and do most of my driving in low risk areas.  I don’t play with fire, skydive or do race cars.  I come from a family with good longevity genes.  I have good blood pressure and avoid too much salt.  I’m only a few pounds over my ideal weight.

One significant minus concerns me, though.  I don’t exercise regularly.  In fact, the main reason I push a lawn mower over my 2 acres of grass in the Summer instead of riding a tractor is that mowing is good exercise.  Unfortunately, that’s about all the exercise I get.  I walk around the block a few times a month with my daughters, but I’m sure that’s not enough to be considered regular exercise.

I’m not too old to exercise.  I have a friend of a similar age who plays hours of basketball each Saturday night … often until midnight!  Another friend works out with weights three times a week during lunch.

Why don’t I exercise?  Probably for the same reason many caregivers fail to exercise:  it requires an investment of time and time is always in short supply.  That sounds like a good excuse, but I know it’s not.  I have no good excuse.  I should buy a bike and hit the road.  Maybe start running.  Something.

To be rational, it does no good to wish for a long life if one doesn’t do everything required to live long.  I must exercise regularly.

Caregivers Tip:  Exercise.  It’s good for you and your increased health will be good for your loved ones.

Do you find it difficult to slow down and catch your breath? In the best of situations, finding time to relax can be difficult. However, even brief breaks help.

This afternoon I bulk-loaded some Kodak Plus-X125 black and white film, grabbed my old Pentax and laid down in the yard to take some macro shots of the blooming daffodils and budding roses. I haven’t taken pictures like this in more than 20 years and it felt great.

I wasn’t in the yard more than 30 minutes. But the 30 minutes were exquisite. The sky is crispy blue, the few small clouds are scattered far apart, the breeze is cool and bouncy, the temp is perfect and the humidity is low. In other words, it’s the perfect day to lay in the grass with my old lens a few inches from a bright, yellow daffodil.

Scripture notes that on the seventh day of creation even God rested. I can tell you, it sure feels good.

Caregiver Tip: Take a rest!

I heard an older gentleman married a long time to his wife say, “She doesn’t have MS. We have MS.”

On the other hand, I’ve also heard and read stories of men who told their wives, “I can’t handle this MS stuff. I’m out of here,” and then they’re gone.

Without question, being told your spouse has Multiple Sclerosis is overwhelming. And as time passes, daily reminders accumulate. Most of these daily reminders can become hassles. New symptoms appear. New medicines fill your medicine cabinets (and they’re expensive).

Your part of the household workload increases because of your spouse’s fatigue. Expenses arise you didn’t imagine you would consider until old age when you might need to purchase walking canes or a walker or wheelchair.

Your life slows down because your spouse can no longer keep up with your normally quick pace. You’re feeling older than you think you should because everyone passes you and your wife.

Now that you walk slowly enough to smell the roses, you can’t because you haven’t had time to tend to them and they have died of neglect!

The emotional content of your life also changes. You deal with the daily frustrations of a partner who can no longer do all the things she or he wishes to do. Loss casts a misty shadow when you see other couples running around together … literally running.

With each new symptom or loss, it’s easy to feel like your world is becoming more circumscribed by a wall that slowly constricts closer around the two of you. In the best situation, family and friends understand the changes that are occurring in your world and continue to include you in theirs. In the worst case, MS can lead to a sense of isolation for a couple leaving them alone with each other.

The Big Question

If you are married to a partner with Multiple Sclerosis (or any other chronic disease) you understand intuitively many of the ways your spouse’s disease affects you. As I think about it this morning, one of the most character-defining moments your partner’s disease offers you is the question, “what am I going to do about this disease?”

I think the question offers only three possible answers.

1. “I can’t handle this. Goodbye.”
2. “We’re married, but this is your disease.”
3. “We have MS.”

I won’t discuss the first two responses because they aren’t about commitment. If you’re committed to your spouse, in my opinion, the only healthy position you can take is, “we have MS.” It’s the best response.

“We Have MS”

I know men who are so committed to “their” team that they’re actually sad when their team loses.  They stress about upcoming games against stronger teams and they wear clothing with their team’s logo.  They paint their chests.  They say things like “we lost” and “we won!” (And this from guys who have never played ball anywhere but the back yard.) In other words, they identify strongly with their team and are committed to it through thick and thin.

This is simplistic, men, but if you can’t cheer for your partner who has MS with the same fervor you have for your favorite team, you’re missing the point and the joys of marriage.

Strong, healthy marriages are formed in the crucible of crises. Be careful you do not read that with a negative slant.

A marriage lived in the “crucible of crises” is NOT an endurance contests! “Strong, healthy” marriages do not happen because of sheer tenacity. They are filled with their own rewards!

Strong, healthy marriages are nourishing for both partners. Even in the shadow of frequent crises; strong, healthy marriage are filled with joy and comfort.

You and your partner will never have a shot at a strong, healthy marriage if your response to your partner’s MS (or other disease) is “goodbye” or “this is your disease.”

Going back to the sports analogy, in terms of commitment, supporting your favorite team is child’s play. Being positively married to a spouse with MS is playing in the big leagues.

Caregiver Tip: For “strong and healthy”, your answer has to be, “we have MS. How do we deal with it together.”

MedWatch is the FDA’s web site for reporting current medication safety information about drugs and medical products which are regulated by the U.S. Food and Drug Administration. The “What’s New” column on the left side of the home page is where the news is posted as it becomes available. You can subscribe to receive safety alerts by email.

On 10/24/2007 the FDA and Cephalon (manufacturer of Provigil) notified healthcare professionals of an updated WARNINGS section of the prescribing information for the drug. According to the posting,

“Physicians should instruct their patients to immediately discontinue the use of Provigil and contact them if a rash or other hypersensitivity reaction occurs. Healthcare professionals and consumers should also be aware that Provigil is not approved for use in pediatric patients for any indication. In addition, psychiatric adverse experiences (including anxiety, mania, hallucinations, and suicidal ideation) have been reported in patients treated with Provigil. Caution should be exercised when Provigil is given to patients with a history of psychosis, depression, or mania.”

Obviously, this is good information to know. Other than the specific side effects, it means Provigil is like any medication. One must balance the side effects (and potential side effects) against the good the medication does. The information about these additional side effects serve as a reminder than any chemical one uses to modify the way a brain works may hold unexpected dangers.

It’s good to know that should my wife suddenly experience any of these side effects, her Provigil may be the reason. Of course, these additional potential side effects are also listed in the prescribing information for a couple of her other medications, too. Modifying brain chemistry is a tricky thing.

Here’s what surprises me. I did not learn of the FDA’s updated warnings from a healthcare provider. Nor did my wife receive information about the updated warnings from a doctor, pharmacist or the drug manufacturer.

I first learned about the new prescription warnings by reading it on a financial news web site.  TheStreet.com posted an article on 10/24/07, by Elizabeth Trotta, titled “FDA Warns on Cephalon’s Provigil“.  The Multiple Sclerosis Foundation has a good article about this issue, too: “New Warnings for Provigil“.

Cephalon’s “Newsroom”, the page on their corporate web site for news releases, provides no mention of the updated warning (I’m exploring the Cephalon site on 11/04/07). Cephalon’s web site has a page of corporate information for investors, but nothing there is about the 10/24/07 FDA announcement of the updated prescription warning.

Cephalon also has a product-specific web site for Provigil at www.provigil.com. The Provigil.com web site offers a lot of good information about the medication and its uses. If you or someone you know takes Provigil, the Provigil.com web site is a great resource for you. The important information for patients about side effects and medication use is available from the upper right hand link, “Patient Information”. The information is dated August 2007 (before the FDA MedWatch notice).

The lesson for patients and caregivers? Use MedWatch AND the web sites of drug manufacturers to stay on top of important drug safety information.

How Drug Safety Information Seems to Flow

MedWatch is the official place to read the latest drug safety information. Generally, this seems to be how drug safety information flows: Drug safety news appears initially on MedWatch. Next, the news media (medical news and financial news) pick up on the MedWatch postings and write articles to inform the public of significant drug safety news. Then drug manufacturers and medical professionals inform patients.

However, in Cephalon’s case with Provigil, the drug manufacturer was ahead of the FDA MedWatch posting. The Provigil FDA Approved Labeling (PDA File) was updated on August 17, 2007 and on September 12, 2007, a “Dear Healthcare Provider” letter (PDF File) was produced which details the updated information and warnings.

Good job, Cephalon.

Caregiver Tip: Know the names of all the drugs taken by the MS patient for whom you care. Check MedWatch regularly to learn about drug safety news related to these medications. I’ve added a link to MedWatch in the right hand column. Also, visit the web sites of the drug makers for current information. As they say, “knowledge is power”.

What does “rest” mean in your busy world?

Does rest mean you had a good night’s sleep?  Does it mean you slept long enough to wake up refreshed and without bags under your eyes?

We usually think of rest in terms of our physical body.  When we say we’re rested we usually mean we aren’t sleepy and our bodies are not physically tired or sore from too much effort.

However, “rest” applies to all the other aspects of life, too: mind, emotion and spirit.

How do you rest your brain?

If you care for an MS patient who is experiencing cognitive symptoms you may be using your mind for two people.  You use it for yourself, of course, but you may also find yourself sharing your brain:  remembering things or completing the sentences of the one for whom you care.  Cognitive difficulties in MS patients most often occur in the areas of memory, attention and reasoning.

As early as 1951, A.H. Canter published “Direct and indirect measures of Psychological deficit in Multiple Sclerosis” in the Journal of General Psychology (44:3-50).  He compared the test scores of recently diagnosed MS patients on the Army General Classification Test with the scores from four years earlier when they took the test as healthy soldiers.  Canter noted a significant decrease in the test scores.

Rest for your brain probably means you give it a break by not thinking too strenuously.  Lay in the grass and watch the clouds, sit on the porch with a cup of coffee and watch 2 dozen hummingbirds frolic around the feeders (Thanks, Dad!), take a walk around the block, or get lost in a good story.

How do rest your emotions?

An odd concept, to be sure, but is it possible to rest your emotions?  One might joke that apathy is the best way to rest one’s emotions.

And joke it may be, but there may be something to it.

Caregivers experience a variety of emotions and do so at frequently changing levels of intensity.  We usually mean someone doesn’t care when we say they’re apathetic.  What apathy really means is that one is without pathos or emotion.

If you’ve been on a roller coaster of emotions this week, perhaps making today a “day of rest” might include a little apathy, a period of no emotion.  Personally, I can be emotionless about a game of solitaire.

Does the idea of choosing a period of apathy make you feel guilty?  Don’t worry.  After the solitaire game is over, the emotions will be there.  A brief period of apathy doesn’t mean you do not care.  It’s means you’re taking care of your own emotional health.

Finally, how do you rest your spirit?

In an earlier post I mentioned Spiritus vertiginis, the dizzy spirit related to anxiety.  Reading Scripture helps my spirit rest.

I read the 6 verses of Psalms 23 nearly every day:

The LORD is my shepherd; I shall not want.  He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

It varies by circumstance, but on most days the phrase “surely goodness and mercy shall follow me” is the part I find most helpful.  The idea that God’s mercy chases after me feels good.

Sometimes the hardest part of making Sunday a day of rest is the act of stopping and letting God’s mercy catch me.

Caregiver Tip:  Rest is important.  Find what works for you to give your body, mind, emotions and spirit rest.  It may be as simple as stopping and letting Grace surround you.

I’ll explain why after I share a summary of a 2001 abstract I’ve just read titled, “Being a Multiple Sclerosis (MS) Caregiver: an Important Impact on Health Status“, by Aymerich/Jovell available on the website of the National Institute of Health’s National Library of Medicine.

The study included 705 patients and 551 caregivers from 9 hospitals and was completed during a three year period from 1997 to 2000. The MS patients were mostly 40-ish year old, married females. 78% had the relapsing/remitting form of MS and had had the disease an average of 6 years.

The caregivers averaged 45 years old and were almost split evenly in terms of gender (51% female). They had lived with the MS patient for a mean of 11 years and were giving care for 3 hours per day.

Among the MS caregivers, 16% were taking a psychotropic medication or receiving psychotherapy. 147 of the caregivers (21%) had a score on one of the administered tests of a “probable mental disorder”. The conclusion of the study is that being an MS caregiver has an impact on one’s health, especially on mental health.

Does being an MS caregiver impact your mental health? Yes.

But so does the general stress of life.

While being a caregiver can cause moments of stress, caregiving per se does not cause stress.

In fact, being a caregiver can be seen as one’s particular calling and actually give one peace. For example, I visited with a friend in the post office today who is excited about her future as a professional caregiver. Her children are grown and on their own. Now she’s back in college studying to become a geriatric nurse. Her statement that I liked most, “I like brushing hair and helping an older patient feel special.”

So, while the study mentioned above may cause you concern when you read that 16% of the MS caregivers were taking psychotropic medications or receiving psychotherapy and that 21% may have had a probable mental disorder, fear not!

In terms of mental health, MS caregivers in the study were actually doing better than the general population!

According to “Mental Health: A Report of the Surgeon General, “surveys estimate that during a 1-year period, 22 to 23 percent of the U.S. adult population—or 44 million people—have diagnosable mental disorders, according to reliable, established criteria.”

One can manipulate numbers to support any position, but the 21% of caregivers mentioned in the study is less than the 22 to 23% of the U.S. adult population having diagnosable mental disorders. Stressed out or not, we’re holding our own!

What does this all mean? Two things:

1. Being an MS caregiver will have an impact on your mental health. Pay attention to your mental health.

2. Life as an adult in the United States will have an impact on your mental health. Pay attention to your mental health.

Caregiver Tip: Pay attention to your mental health in the same way you do your physical and emotional health. When viewed as a calling, caregiving offers a fulfilling purpose in life.

I agreed, “Yes, she does look good!”

I embarrassed him a little so he clarified it a bit, “I mean she looks like she’s getting along well.”

Of course few see her when she’s not getting along well.

For many MS patients, each day is a new experience with Multiple Sclerosis. Last week I read one lady’s comment, “I don’t know when I wake up whether I’ll walk or ride (my wheelchair).”

One thing the literature seems to be fairly certain about is that MS is a progressive neurological disease. As an MS caregiver, the word “progressive” is the one that usually troubles me most. My wife has had MS long enough for me to see the trend. I don’t like it. The concept of “progressive” holds too much power over our future and it doesn’t share what it knows. Some days I fret about the future.

I read accounts of MS patients who have had the disease much longer than my wife. I fret when I do. And when I fret, I try to make it worthwhile. Like anticipatory grief, I want some good to come from the fretting. When I read about the possibilities “progressive” might hold for my wife’s disease process, I consider how we’ll handle them if they arise.

What if she wakes up blind one morning? We’ll deal with it. (From what I’ve read, I gather MS-induced blindness usually occurs in only one eye and is transitory.) What if she loses the ability to control her arm? We’ll deal with it. What if muscle spasticity makes it impossible for her to bend a leg? What if she loses the ability to … you get the idea. What ever happens, I believe I may have already fretted about its possibility and so (I hope) I won’t be caught off-guard.

If you can turn your fretting into something productive that helps you prepare for the future, the fretting can serve a useful purpose. If you fret to no avail, though, stop it.

Phillip Yancey, in his book, “Prayer”, writes about a phrase John of the Cross used to describe a feeling that interfered with his prayers. He called it Spiritus vertiginis. Yancey writes it’s “like vertigo that leaves the head spinning and the stomach churning.”

I think the best modern term for the ancient “spirit of dizziness” is anxiety. If you’re an MS caregiver who considers the future, you probably know anxiety. I feel it when I fret about the future without making plans. Anxiety usually arrives late at night when I’m tired and my defenses are down. I feel it, too, when something about my wife’s MS changes. A new symptom, the strengthening of a current symptom, a hassle over coverage for medications … these can all stir a little anxiety … until I make plans.

In short, if I fret about the future without using the fretting to prepare for the potential problem that troubles me, the fretting becomes unproductive anxiety. It can slip up on me and wear me down. It makes my spirit dizzy.

The best way I’ve found to counteract the anxiety is to think clearly about how I’ll handle the potential problem I’m feeling anxious about. Moving from feeling anxious to actually planning a proactive response, gives my concern about the future a useful purpose.

Caregiver Tip: It’s a rare MS caregiver who can avoid fretting about the future. MS is so unpredictable. When you feel anxious about the future, make a definite plan to handle the concern that troubles you and turn your fretting into something useful.