Multiple Sclerosis Caregiving - Doing Your Best When You Can’t Make It Better
Posts tagged ‘multiple sclerosis’
A recent article on PhysOrg.com reports on animal studies by scientists at the University of Michigan which suggest people who experience the same clinical signs of MS may have different forms of the disease requireing different kinds of treatments.
My wife made a comment last week that I’ve thought about a lot since she said it. It was said in passing in the middle of a conversation that I cannot remember (apparently, my wife’s not the only person in our family with poor memory). In this case, though, I think I fail to remember the rest of the conversation because her comment stunned me.
“I don’t think I’ll live a long life.”
I knew if I talked to her about it then I would become too assertive about how wrong I thought the statement was and that she had no right to think that way. (Actually, she has the right to think any way she wishes … and usually does … even if when I don’t like it!)
I knew, though, I wouldn’t be able to listen to what she was really saying. So, a week later, yesterday morning, I asked her about her comment.
“I imagine you said it because you have MS, but having MS doesn’t mean you’ll have a shorter life. Are you thinking you’ll have a shorter life because of something you’ve read? Or is it just a hunch?”
She’s a realist and a pragmatist. “I need the cane to walk around on and it’s getting worse. I’m headed for a wheelchair in my future and I don’t think people confined to wheelchairs live as long,” she explained simply.
I know her gait is worsening. And I won’t be surprised when she requires a wheelchair. But I’m not ready to believe it will shorten her life. I said, “Unless you’ve read some significant study, I wouldn’t assume being confined to a wheelchair automatically shortens one’s life.”
She countered, “people in wheelchairs get less exercise, hearts grow weak, muscles grow weak. I don’t think they live as long.”
Ever the optimist, I responded, “Yes, perhaps that could be true, but I know people confined to wheelchairs who are in great shape. They even make racing wheelchairs for athletes!”
Her eyes said, “but I’m not an athlete.” She looked at me like I wasn’t understanding her. The fact is, I didn’t want to understand. I didn’t want to think that being confined to a wheelchair will shorten her life.
It’s obvious neither of us knew the real impact a wheelchair has on lifespan. So it was time for a little online research.
I’ll share what I’ve found about life span and wheelchair confinement. Interestingly, I’ve not been able to find a single study of the impact of wheelchair confinement on lifespan for MS patients.
So I’m approaching it from a different angle. I’ll start with the basic question, “Is MS fatal?”
According to the National MS Society the answer is: “No, MS is not a fatal disease, except in rare cases. People who live with MS can be expected to have a normal or near-normal life expectancy.”
I like that answer except for the “except in rare cases” part. But from all I’ve read, those rare cases are indeed rare and consist primarily of MS patients in whom the neurological damage is done to areas of the brain and nervous system which control breathing or regulate heart beat.
A more complete answer seems to be available on the Medscape Today website in “Aging With Multiple Sclerosis“, an article published in the Journal of Neuroscience Nursing (J Neurosci Nurs 36(5):245-251,259, 2004. © 2004 American Association of Neuroscience Nurses)
The authors write, “The disease (Multiple Sclerosis) causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).”
The authors did not separate the MS patient population into two groups, Those in Wheelchairs vs. Those Without Wheelchairs. The statistics include all MS patients.
So I’ve found an answer to my wife’s statement that she’ll not live a long life. I think she will live long.
Here’s why: 85%-90% of MS patients can expect to live as long as their age peers. (I don’t think I’m doing any funny math here, but the following works for me). Statistically, the bulk of MS patients will be found toward the average (inside the bell of the bell-shaped curve for those of you who like statistics and graphs). The 10%-15% of MS patients who do not live as long as their age peers are in the population that are outliers, they are a standard deviation or two away from the norm.
Based on her symptoms to date I believe she is having an “average” experience of MS. So, to extrapolate that into the future, I think she’ll find herself well within the 85% to 90% who live as long as their age peers … with or without a wheelchair.
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.
“I need more Leg Hours in a day!”
You’ve heard the term “man hours” before. I heard my wife use a new term today. It’s “leg hours”.
“Leg Hours” are the number of hours in a day that my wife’s legs work well enough for her that she feels stable and productive. The number of good leg hours in a given day varies. Some days she has many, some days she has few.
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