September 2007 – multiple sclerosis caregiving

Published September 30, 2007 by Rick

A Day of Rest for Body, Mind, Emotions and Spirit

It’s Sunday. How will you make it a “day of rest”?

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.

Caring for Yourself

Published September 29, 2007 by Rick

Does Being an MS Caregiver Cause Mental Health Problems?

You may feel like it sometimes, but being an MS caregiver does not endanger one’s sanity. In fact, as a caregiver, you probably have no more reason to worry about your sanity than any other person.

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.

Caring for Yourself

Published September 25, 2007 by Rick

Fretting About the Future

A friend told me yesterday he had seen my wife in a local store and “she looked good.”

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.

Caring for Yourself MS Caregiving

Published September 23, 2007 by Rick

How Do You Pray?

It’s Sunday.

In the medical literature one frequently reads, “there is no cure for Multiple Sclerosis.”

So, do you pray your loved one will be cured?

Or do you pray the disease process will be kind? Do you pray for a long time between relapses? Do you pray for courage as you face a foreboding future? Do you pray at all?

I pray.

However, I don’t pray for a miraculous healing. I can’t pray that, because I really don’t expect it’s possible. Whether that’s weak faith or simply a keen awareness of reality, I’ve always found it difficult to ask God for something I think is impossible to receive.

We’ve all heard stories about people who have been impossibly cured of diseases. In many cases, I’ve also learned later their “cure” was only a remission and their disease had come back as mean as before. I don’t think God will tweak the laws of physics because I want Him to do a miracle for my wife.

I believe it’s miracle enough that He is present in our lives.

In terms of her Multiple Sclerosis, I thank God for my wife and for our relationship. I thank Him for loving us. I pray for stamina. I pray for a kind heart. I pray for courage. I pray for patience. I pray I’ll be a wise caregiver. I pray for very long periods of time between her relapses. I pray I’ll always be able to afford her medical care. I pray I’ll live long enough to care for her for all of her days. I pray I’ll always be a blessing to her. I pray I’ll always be as strong as situations require. I pray for goodness and mercy.

I pray for others I know who are MS patients or MS caregivers. I pray for the scientists and doctors who are working on a cure and wish them God-speed.

It’s Sunday. Today and every day, there is much to pray for.

Caregiver Tip: Prayer is an important resource for a caregiver.

Theology of Caregiving

Published September 22, 2007 by Rick

Anticipatory Grief is a Good Thing

I remember reading the cartoon book, “Good Grief, Charlie Brown”, when I was a child.

The phrase, “good grief,” grabbed my attention. What did it mean?

I knew grief was what one experienced when someone died. At the time I didn’t imagine that could be good. One lives long enough and learns that grief really is a good thing.

Books have been written about the grief process and I’ll not repeat the “stages of grief” material here. However, there is a type of grief that can play a large role in the life of a caregiver. That grief is Anticipatory Grief.

Anticipatory Grief is the grief one experiences before an expected event happens. Anticipatory grief helps prepare us for future loss. It’s a sense of sadness and other emotions that come before an event we know will hurt us in some way.

For one caring for an MS patient, anticipatory grief is what you feel when you consider the future and what it probably holds in terms of your loved one’s disease progression. I like numbers so I pay attention to the statistics in articles I read which describe the typical disease progression of Multiple Sclerosis. I don’t like what I read and I don’t like what the statistics seem to indicate for the future.

Don’t get me wrong. Because most of the time I am very aware of what a gracious universe it is in which I live. By nature, I’m an optimist about personal things. When I read about the promising research being done in the field of Multiple Sclerosis, I’m filled with hope. I look forward to what the future holds for the treatment of Multiple Sclerosis.

But occasionally, after reading an article about MS and the typical disease progression from relapsing/remitting to secondary progressive, a sense of grief about the future slips up on me and I find a few tears gathering behind my eyes … not enough to fall … but enough to know they’re there.

That’s anticipatory grief. And, believe it or not, it’s a good thing.

Caregiver Tip: It is important that a caregiver acknowledge the sadness one feels when considering the future. Anticipatory grief is a healthy response to a future loss.

Caring for Yourself MS Caregiving

Published September 21, 2007 by Rick

7-Day Pill Boxes

“I don’t remember if I took the medicine to help me remember things,” my wife told me last night, “so I didn’t take it in case I already did.”

This morning I’ve searched the Internet for a way to organize her medications which will make it obvious for her that she has taken them or not. The solution I’m looking for seems to be called a 7-day pill box and there are many different styles available.

Later today I’ll visit the local drugstores and see if I can find one locally. From my search of the web, I think I want one that has 4 compartments for each day, it will not open too easily (to avoid spills), and it will be clearly labeled in terms of day of the week and time of medication administration (morning, noon, evening, bedtime). I also want one that has rounded compartment bottoms. This will make it easy to remove the pills from their compartments. I imagine some of her smaller pills could easily hide in the corners or edges of a square-bottomed compartment.

Fortunately, from my online search, it looks like pill boxes are among the least expensive medical supplies. Most that meet the criteria I’ve listed are only a little more than $10.00. Though, I’m guessing they’ll be a little more than that if purchased locally.

Caregiver Tip: Before you buy something you’ve never before purchased, search the Internet and learn as much as you can. For example, comparing 20 pill boxes online makes it easier to choose the best features to meet your needs.

Practical Tips

Published September 20, 2007 by Rick

Take Advantage of Free MS Healthcare Information

The Multiple Sclerosis International Federation (MSIF) is an international organization which links the activities of national MS societies around the world.

A growing series of publications is a free resource for people with MS, their caregivers, medical professionals and MS support groups. The series addresses the broad spectrum of issues related to living with Multiple Sclerosis. Each of the 10 publications is available as a free PDF download.

Titles in the series include, “Pain and MS”, “Caregiving and MS”, “Genetics and hereditary aspects of MS”, “Rehabilitation”, “Intimacy and Sexuality”, “Healthy Living”, “Emotions and Cognition”, “Special focus on the family”, “Dealing with Bladder Problems”, and “Dealing with Fatigue”.

You can also sign up for a free paper subscription or an email subscription. It appears a new publication in the MS in Focus series are released each 6 months.

Caregiver Tip: Take advantage of the free information about Multiple Sclerosis. The Multiple Sclerosis International Federation is an example of the organizations created to help MS patients, caregivers and healthcare professionals.

Online Caregiving Resource

Published September 20, 2007 by Rick

Multiple Sclerosis is Not Brain Cancer

Getting the diagnosis of Multiple Sclerosis took too long from the time my wife first talked to her primary care physician about the intense headaches and shaking hands until the second neurologist completed his testing and gave us the diagnosis. The medical tests were frustrating, the feedback came too slowly, and living in a small town was limiting.

After too much time without definitive answers, we found a neurologist at a university medical school. He ordered new tests, repeated some that had been done already, and then scheduled a spinal tap so her spinal fluid could be examined for oligoclonal bands. (I know “oligoclonal bands” is begging for a definition and I’ll try to provide one in a later post.) The neurologist found them and diagnosed my wife’s Multiple Sclerosis.

One of the biggest arguments my wife and I have had was during the hour’s drive home from the neurologist’s office after he told us she has Multiple Sclerosis. I was angry about the diagnosis. But I was even angrier because she seemed so relieved to know she had MS. How dare she accept the news so peacefully and gracefully!

“How can you feel good about this!” I yelled.

“Because I don’t have a brain tumor,” she replied quietly.

“I’ve been so afraid this was brain cancer,” she continued, “and that I was going to die before my girls grow up. I can live with MS. I’ll see my daughters grow up, graduate from college, get married, I’ll live to be a grandmother. I’ll be here to see it all and enjoy them.”

How do you argue with that?

Caregiver Tip: Multiple Sclerosis can stir deep emotions in a care giver and an MS patient. Good relationships are strengthened when both people are free to share their emotions, particularly when they feel very different emotions.

MS Caregiving

Published September 18, 2007 by Rick

Consider the Door Lever

Sometimes it really is the little things that make it easier for an MS patient. Think about a door knob. Door knobs are simple and elegant in design. One simply squeezes the knob and turns it. If one has a good grip, that is. Without a firm grip, door knobs can be frustrating.

Replacing the standard, round door knobs with door levers is a small, do it as you can, project that is a good example of the type of simple modifications one can do to enhance the living environment of an MS patient.

Door knobs with the lever-type handles are easier to open than the round knobs that must be held and turned. The offset handle makes it easy, too, to open a door with both hands full. By simply pressing down on the lever the door can be opened.

Replacement door levers come with instructions and, if one is skilled with a screwdriver, the replacement is not too complicated. However, if the work seems beyond your ability, there are probably plenty of folks who would be happy to help you at no charge if you explain the reason you need to install the new door levers.

Enough door levers for a whole house can be purchased at one time or you can buy them one-by-one as you replace the knobs. One per month spreads the cost out over time. I replaced the door knobs with door levers in our house and I think I paid about $15 each for those that do not lock (like for a closet) and $25 for those that do (like you would want on a bathroom door). My wife would caution, “make sure they all match!”

Caregiver Tip: Small changes to the living environment can greatly enhance an MS patient’s ability to live comfortably.

Practical Tips

Published September 16, 2007 by Rick

Was Paul’s “Thorn in the Flesh” Multiple Sclerosis?

It’s Sunday!

The New Testament is full of examples of the Apostle Paul’s physical ailments. I remember hearing of his “thorn in the flesh” when I was a child.

There wasn’t much for a first grader to do in south Texas in the 60’s. I liked to break the prickles off my mom’s roses and would occasionally stick the tip of one in my fingers. I imagined Paul’s “thorn in the flesh” must have been huge and deep if no one could remove it!

So What Was Wrong With the Apostle Paul?

Jim Kemp’s “must read article”, What Was Wrong With the Apostle Paul?, presents an excellent analysis of the Apostle Paul’s physical ailments and compares them to the diagnostic criteria for multiple sclerosis. He offers a convincing argument the Apostle Paul’s symptoms may very well have resulted from the relapsing/remitting form of multiple sclerosis.

If this diagnosis is correct, the life of the Apostle Paul is a great example of one who accomplished much in spite of the “on again/off again” symptoms resulting from his MS. If you care for someone with MS you know the frustrations of the exacerbations and relapses followed by the relief of the remissions. And always in the back of your mind is concern about when (or if) the relapsing/remitting form will become secondary progressive.

A good presentation of the different forms of multiple sclerosis titled, “Types of Multiple Sclerosis”, is available on the MultipleSclerosis.com web site. The article shows line graphs of the way MS progresses in its different forms. According to the article, on average, MS relapses occur every 2 years and the change from relapsing/remitting to secondary progressive occurs after 5 to 15 years. In the secondary progressive form neurological symptoms tend to worsen progressively instead of coming and going.

I digressed. One role of an MS caregiver is to offer encouragement. This can be difficult when an MS patient is experiencing a relapse or suffering progressive decline. After reading Jim Kemp’s article, “What Was Wrong With the Apostle Paul?”, and knowing how much Paul accomplished, I’ll read Paul’s letters with a renewed perspective on what one with MS can actually accomplish in life.

Caregiver Tip: Find ways to offer encouragement that are meaningful to the one for whom you care.

MS Caregiving

Published September 15, 2007 by Rick

Discovering the Joy in What Is Beats Aching for What Might have Been

No thinking adult truly expects life is fair. Most of us grow past that fantasy during adolescence.

Even so, there lives deep in our hearts the desire that life be fair. And when it’s not, we ache for what “should” be. Unfortunately, if we focus so much on what “should be” we miss the joy available to us in what actually is.

I have a photo which I took on our honeymoon. It sits on my desk. It’s a reminder of many things for me, but it serves primarily as a memorial to joy, overcoming fear, and commitment for the long haul.

Exploring Eureka Springs, Arkansas, we drove by an observation tower. My wife said, “let’s go look!” I turned around and parked. Afraid of heights, I looked at the tower and noticed the first platform about 15 feet above the ground. I expected we would stop there, look, take a picture and return to earth.

She hurried across the parking lot and started up first. I carefully followed her, walking slowly up to the first observation level.

She wasn’t there!

Instead I could hear her running up the metal steps to the top. I faced a dilemma. I remember making a calculated decision, “Do I stand here and wait for her to come down (and look like a wimp) or do I venture after her to the top?”

I often consider how current events will impact my future. I knew, if proven a wimp on my honeymoon, I’d never feel good about it. I swallowed my fear and with both hands on the stair rails I slowly climbed to the top.

A few minutes later, with the tower swaying in the wind and my stomach knotted up, I stepped slowly and gently from the last step to the platform at the top of the tower. She was leaning out at the edge looking across the valley. We were alone at the top of the world.

“Come here,” I said, standing near the stairs trying to hide as much of my terror as I could, “and kiss me.”

We kissed. I held my camera out at arms length, pointed the lens toward our kiss and I tripped the shutter. “Gotta go,” I said and started slowly and carefully back to Earth. In my opinion, it’s the best photo I’ve ever shot.

The angle, the lighting, the wind … it’s an excellent photo. She’s taller than me in the photo because I was hunkered low near the stairs. The wind is blowing her hair in my face. We’re against a blue sky. The photo is in a frame matted with a red heart with two doves cut into the mat’s upper corners.

It’s a photo of swirling, giddy, joy. Just the two of us on top of the world on a beautiful, breezy, blue-sky day. She was full of energy and possessed the grace of young lady, the excitement of a newlywed, and the hope for a great future. I was frightened of the height, hanging on to the only stability I could find, and wanting something firm, like planet Earth, under my feet again.

Fast forward 17 years and see the change. Several years ago, a psychologist-friend cured me of my fear of heights. I’m the one who flies up ladders now, while I doubt my wife with MS could make it to the top. Our tower-climbing roles have reversed.

I see the photo on my desk and I’m reminded of how roles change over time. If you’re an MS caregiver for a family member, the disease will force role changes. Caregiving will call you to make changes in your routines, roles and responsibilities. Some changes will be uncomfortable and you’ll think, “This isn’t fair. I didn’t ask for this.”

It’s also likely that you will enjoy some of the role changes.

For example, I get the biggest kick out of a day with my daughters at the mall buying clothes. To be honest, if my wife could do the mall, I’d probably rarely, if ever, spend the day clothes shopping. It’s just not natural. But it’s fun.

I know my daughters have stepped out of a dressing room and heard me say, “too short,” “too tight,” “too thin,” or “too much,” and they’ve thought, “Mom should be doing this.” But such is life.

Caregiver Tip: Avoid focusing so much on what “should be” that you miss the joy available in what actually is.

Caring for Yourself

Published September 14, 2007 by Rick

Warning Indicators are Important

A red indicator light appeared on the instrument panel. It said, “Oil”. I slowed down a little. I knew there was a gas station at the top of the hill and when the warning light lit up I thought, “I can make it to the top of the hill and get oil at the station.”

It didn’t happen. The engine shuddered and died before I made it up the hill to the exit ramp.

Without enough oil in the engine, the friction of the moving pistons generated so much heat that parts of the engine actually melted together into an block of useless metal.

Warning indicators are important.

Years ago I identified my personal warning indicator for stress. When stress grows and I fail to pay attention to it, the muscles below my right eyelid begin twitching.

When the muscles twitch beneath my eye, it feels like everyone around me should be staring at my face and wondering why my lower eyelid is bouncing up and down. But no one else notices it. The twitches are too small to be seen by others. But I notice.

Just like with the red “Oil” light on the dashboard, I must decide what to do about the stress and when to do it. Can I make it to the top of the hill? Or should I pull off and give it a rest?

When my eye-twitching warning indicator goes off, I’ll try grabbing an extra hour of sleep that night. I’ve also found other ways to relieve the effects of too much stress. Taking a walk around the neighborhood with my daughters is good.

Reading Psalms 23 and Ecclesiastes helps. “For everything there is a season, and a time for every matter under heaven,” includes a time for relaxing and taking care of yourself.

Sitting beneath the stars with a good cup of coffee works, too. You’ll want to brew decaf coffee if caffeine wires you. You don’t need the extra caffeine-induced agitation.

While the temptation for a caregiver to ignore a stress warning indicator may be great, it’s important for caregivers to remember: if you burn up your engine, you can help no one.

Caregiver Tip: If you have not yet discovered it, find your warning indicator for stress and pay attention to it. Learning how to recognize signs of too much stress and knowing how to reduce the effects of stress are important skills for caregivers who are in it for the long haul.

Caring for Yourself

Published September 12, 2007 by Rick

The Doctor said, “He can stay.”

I was working in a closet filled with network hardware and cables when my cell phone vibrated on my hip. I answered and heard my 8 year old daughter say, “Daddy, Mommy fell and is bleeding on her head.”

“Is she okay? How bad is she bleeding, Sweetie?” I ran to the stairs.

“Sissy is holding a towel on her head.” I’m running down the stairs.

“Is she awake? Is she talking?”

“Yes, but she’s not saying much. She’s crying and laying on the floor.”

“I’ll be there in just a minute.”

I flew low through the the little town knowing I can be home before an ambulance can get there.

When I got home she was still on the floor and stunned from the blow she received in the fall. The girls had done a great job with first aid.

When we arrived at the ER, I parked and helped her out. A nurse saw her bloody face and the way she was holding her hand and took her straight to an exam room. I followed. The nurse stopped me as I entered the room and asked me to wait out of the room. A doctor walked in as I was stepping out wondering why our two daughters (8 and 11 at the time) were allowed to stay. That didn’t make sense.

I watched from the hallway as the doctor started cleaning around my wife’s eye. The nurse kept turning to look at me. My wife had a laceration just below her eyebrow from her shattered eye glasses that would require stitches. I decided to go in anyway and hold her hand.

As I entered the exam room from my side, a security guard walked into the room through a doorway on the opposite side. “Sir, step into the hallway,” he directed as he pointed to the open doorway behind me that I had just entered.

He walked across the room toward me and followed me into the hall. Just as I started to ask what on earth was going on, I heard the doctor ask my wife, “Do you take any medications?”

Reclined on the exam table, she started the list, “I take Copaxone, Aricept, Neurontin …”

He interrupted, “Do you have MS?”

“Yes.”

He looked up from his work on her face, nodded his head in my direction and said to the guard, “He can stay.”

I held her hand as he did the small stitches above her eye and wrapped her broken finger.

My wife and I talked about the odd way the ER staff had treated me and why they allowed the girls in the exam room but sent a security guard to babysit me in the hallway. As we talked I realized what they were doing.

ER doctors see domestic violence enough that they’re suspicious when a man brings his wife to the ER with what looks like a solid punch to the eye and broken fingers. They were concerned it was a case of domestic violence. It wasn’t until she started listing her medications for him that the doctor learned she had MS.

It’s sad they are necessary, but I’m glad the ER staff have procedures in place to deal with domestic violence. And I felt odd afterwards realizing I had been a suspect for a brief period. I also imagine that if I had ignored the requests to leave the exam room, the guard might have cuffed me in the waiting room.

Caregiver Tip: Cooperate with medical staff when they are initially suspicious about injuries that occur in falls. The precautions and procedures of the emergency room exist for reasons that may be unrelated to your caregiving situation.

MS Caregiving

Published September 11, 2007 by Rick

Over-watered Roses Do Not Thrive

Six New Dawn roses cover a pergola I built for my wife a few years before her MS diagnosis. If I had known then what we know now, I would have built it much closer to the house. My wife loves roses and living out of town as we do, we have a yard large enough for me to have built the pergola too far from the house for her to enjoy as much as I imagined she would.

People think of roses as being difficult to grow. And they certainly can be if they aren’t cared for as they require. Planting them where they receive a full day of sun, giving the proper fertilizer, and watering only in the morning works for me.

I must admit, however, I’ve killed a few roses. I’ve done it for opposite reasons: giving too little attention or by giving too much attention.

I walked by a potted patio rose each day as it died from lack of water. I just didn’t have time. On the other hand, I’ve also killed a rose by giving it too much water.

The over-watered rose, the one given too much attention, is the one I’m considering this morning. My wife self-administered a daily injection for two years until she started having site reactions and had to quit taking the medication. There followed a period of time when she took no injections.

A couple of months ago she started injections of a different medication which I’ve prepared and given to her every other evening. She doesn’t like the needles and has been worried her hands would shake too much to self-administer. Last night she decided to do it herself.

Half way through the multi-step process of preparing the injection she asked, “And they expect people with poor memory to remember all of these steps?” (Here’s where I almost gave my rose too much water.) I asked, “Would you like me to do it for you?”

“No.”

Wisely, she didn’t let me do anything more than finish preparing the injection she was assembling. Then she loaded the injector, did the 5 minute ice pack, and injected her thigh. Though the shot stung, she felt good about doing it and I was reminded of a lesson I frequently forget about over-watered roses: they don’t thrive.

Caregiver Tip: Avoid giving too much “care” too soon for someone who is perfectly capable of self-care. Save your best efforts for when they are needed. And until then, water the roses in the yard.

MS Caregiving

Month: <span>September 2007</span>