Archive for the ‘MS Caregiving’ Category.

Can a Caregiver Be Too Helpful?

April 4, 2008, 8:25 pm

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.

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Category: MS Caregiving  |  Comment

What Do You Do with Bad News?

October 31, 2007, 8:57 pm

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.

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Category: MS Caregiving  |  Comment

Fatigue: What You Should Know

October 22, 2007, 5:11 am

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.

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Category: MS Caregiving  |  Comment

Fretting About the Future

September 24, 2007, 9:32 pm

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.

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