Category: <span>MS Caregiving</span>

I took my youngest daughter to her softball practice yesterday evening.  She played hard.  She bats well, throws hard and loves to run.  She wore herself out.

As we were walking up the hill from the field she stopped, turned, and pointed to her bat bag she had left behind the backstop.  She asked, “Daddy, will you go get my bag?”

I stopped and replied, “No, Sweetie.  You’re the one playing ball, you get your bag.  I’ll wait for you.”

Then, when we got to the truck, she took off her very muddy shoes and dropped them on the parking lot.

“I’m too tired to pick them up and put them in the back of the truck,” she complained when she saw the question on my face.

“Toughen up, Girl,” I replied, “you can do it.”

“Anyone who is tough enough to get them muddy, is tough enough to pick up shoes and put them in the back of the truck.”

She returned to her shoes, picked them up and tossed the over the tail gate into the back of the truck.

I want my daughters to be independent, tough and responsible for their world.  When they start something, I expect them to finish it.  Even when it takes longer because they’re tired.

I’ve thought about last night’s exit from the ball field today.  I treat my healthy daughters very differently than I treat my wife who has Multiple Sclerosis.

If my wife were playing softball, I’d carry her bat bag for her and I’d pick up her shoes for her.  She wouldn’t even need to ask!

But, why?  She’s a tough lady.  And I want my wife to be just as strong and independent as my daughters.

I like to think it’s partly because I’m a southern gentleman reared to hold doors and umbrellas; taught to walk by the curb on sidewalks, eager to carry packages for ladies, with a strong desire to treat all females with respect.  Mostly, though, I treat my wife differently because I want to make her life easier.

MS isn’t easy to live with.  If a person lives with MS, they’re obviously “tough”.  Multiple Sclerosis is a heavy burden.  So, if I can ease my wife’s fatigue by carrying something for her, I’ll do it gladly.  If cleaning the kitchen gives her more “leg hours” to enjoy for herself, I clean the kitchen and wash the dishes.

The list of things I’ll do for my wife without being asked is very long compared to what I’ll do for my daughters.  They have the strength to do it for themselves.  “Don’t be a quitter.  Be a go-getter!” I tell them.  To my wife I ask, “can I help you with that?”

Sometimes I wonder, though.  How do I know I’m drawing the line in the right place.  What if I’m being “too” helpful?  What if by making life a little easier for her, I’m actually preventing her from being as tough as she really is?  What if being helpful so often really isn’t helpful?

Would she walk further?  Could she carry more groceries?  I think she would and could.  Would it be good for her?  I don’t know.  I do know she would be much more fatigued and stressed.  Would that be good?  No.

And I know if one of my daughters had MS such that she were so easily fatigued, I wouldn’t make her carry her bat bag if she had worn herself out playing ball.  I’d carry it for her.

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out.  Ask the person for whom you care if you’re doing too much.

And remember, what you’re needed for today may not be what you’re needed for tomorrow.  The symptoms caused by Multiple Sclerosis vary over time.  You may need to do the grocery shopping for several months in a row and then be surprised when you’re told, “I’ll do the shopping today.”

When that happens, let your loved one do it.  Grab a cup of coffee and a good book.  Enjoy the moment!

 Caregiver Tip:  Talk with the person for whom you care about what help is needed and remember that the need will change over time.

MS Caregiving

When someone asks you if you want the good news or the bad news first, which do you choose? I prefer the bad news first because then the good news sounds even better. Of course, some days you only get the bad news.

Yesterday, after her neurologist conducted an EMG on her leg, she had only bad news. (An EMG is a test with needles and electricity designed to make mad scientists drool with envy.) The doctor wrote prescriptions for a wheelchair, an MRI of my wife’s lower back, and a brace for her right foot. She told her to get hand controls on her vehicle. “It will not get better. It will grow worse.” Bad news.

What do you do with bad news? There possible responses are too numerous to list, but I’ll share the way I categorize them. You have two basic options. You can 1) whine, complain and choose denial or 2) you accept reality, take care of the problem and get on with life. The first option only enhances the misery of bad news and it explains itself. I’ll not comment further on it.

Accepting reality, taking care of the problem it presents and getting on with life works best. And this really involves three separate steps.

Accept Reality 

One cannot live an authentic life without accepting the reality of his or her existence. My wife is good at this. She cried in the doctor’s office because she understands what the doctor’s prognosis means. One cannot accept reality without being confronted by facts that generate powerful emotions. Loss of ability causes grief. Unlike denial, which is a mind-game one plays to avoid reality, accepting reality can leave you with raw emotions abraded by hard facts.

Take Care of Problems

The second step is to take care of the problems reality presents. Do something to make things better!

One of my roles in our relationship is to do the research and narrow options. Last night I found a company in Michigan that manufactures a hand control we’re going to explore. I called the firm today and chatted with the staff, got 4 phone numbers of authorized installers within 100 miles of where we live and then I started calling them. I know what the hardware and installation will cost and how many hours of training three of the four installers provide. (Important note: The prices vary enough among the 4 authorized installers that it was well worth my time getting a list of installers instead of using the nearest.)

In addition, I called the Office of Motor Vehicles and learned my wife will need a new driver’s license and must take a driving test in the vehicle after the hand controls have been installed. After that she will be restricted to driving vehicles with hand controls. I contacted my insurance agent who is checking with the underwriter to find out if our auto insurance premiums will change.

We explored web sites of wheelchair manufacturers and, frankly, I’m overwhelmed at the different models. I think she’ll want a light weight, folding chair. However, I’ve not found what I’m looking for: a wheelchair super store. I want to find a huge wheelchair store where we can go and she can spend hours picking out the chair that just right for her from a couple hundred models.

I contacted our health insurance company and learned they’ll pay a good bit toward the cost of a nice wheelchair after a $300 deductible is met. They don’t pay for hand controls, though.

While I explored the hardware options, my wife scheduled an MRI of her lower back.

When you get bad news, do what you must do to accommodate it. Only then can you take the third step and get on with life.

Get On with Life!

My wife has already started talking about how much easier life will be in terms of transportation and how nice it will be to head to the mall by herself or with our girls. Her philosophy is, “yes, I got bad news, but we’ll deal with and enjoy the good aspects of life.” And though she was sad about reality, instead of mully-grubbing at home last night, she went out with a good friend to see the musical, “Stomp!” (Thanks, Christy!).

Caregiver Tip: I think I remember reading in a work by Victor Frankl that one’s attitude is the only thing that cannot be taken away. Everyone chooses what they do with bad news. How one responds to bad news either traps you in a molasses of misery or empowers you to get on with life. I recommend accepting reality, taking care of the problems life presents and getting on with life.

MS Caregiving

The National Multiple Sclerosis Society offers an excellent online brochure titled, “Fatigue: What You Should Know – A Guide for People with Multiple Sclerosis”. The introduction explains MS-related fatigue, the but the best part is the “causes and Treatments” section. It offers treatment options for breathing and movement problems as well as a list of self-help energy boosters.

There’s a section, too, about the Americans with Disabilities Act (ADA) which became U.S. law in 1990. The brochure explains the concept of “reasonable accommodations” which the law requireis of businesses that have at least 15 employees.

Back to the list of treatment options and self-help boosters. What if the person for whom you care is already doing everything on the lists to counteract MS-related fatigue but still he or she is fatigued? That’s MS. One caution jumped out at me: Pay special attention to your MS after an episode of unusual fatigue. If your other MS symptoms seem to be getting worse, let your doctor know.

Caregiver Tip: Learn all you can about MS-related fatigue because it is the most common symptom of MS. 75-95% of MS patients have fatigue and more than half say it’s one of their worst problems and one of the major reasons for unemployment.

MS Caregiving

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

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

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

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 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

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?”


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

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?”


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