When I come across something that I can relate too, I like to put it somewhere…..so why not share here with others, my friends who wear the same size shoes as those in my family. This is a great story!
Carrying Super Rachel – The Logistics of When Your Wife Is Chronically Ill
Matt and Rachel (www.brainline.com)
Caring for a chronically ill wife is not what I had envisioned when I was working up the nerve to ask out “that hot girl” who would later become my wife. We were in college and she was on the cross country team. She let me know very early on in the relationship that she had a chronic illness.
Nowadays, it’s just part of life. I’m pretty sure I wouldn’t know what to do with myself if she were well.
There’s a reason I call her “Super Rachel.” On her good days, she can run circles around me–cleaning, getting things checked off her to-do list, and having tons of fun. She’s amazing.
On top of that, she has the greatest attitude and rarely lets her condition get her down. As her dad says, she’s an “overcomer.” Instead of having a “why me?” attitude, she says “what can I do to fix it?” She also has the tendency to volunteer for more than she can handle, but I digress. . .
We have modified our life and come up with plans, backups, strategies, and systems to keep our household going.
We’ve worked through some logistical problems in the past four and a half years of marriage so we could make her life easier and as normal as possible. We have modified our life and come up with plans, backups, strategies, and systems to keep our household going when she’s down for the count.
Here are some tips about the logistics I’d like to pass on to help other couples who are coping with chronic illness:
Career
Super Rachel can’t work sometimes. A couple years ago, she was working part-time, working on her Master’s degree in Exercise Physiology, and working as a Graduate Assistant at the university (to pay for school). She crashed. We worked it out so we don’t need her income and she can stay at home trying to feel better.
Priorities
She was forced to reevaluate her priorities. Rachel used every ounce of her energy to please everyone else and live up to their expectations. Sometimes she was not physically able to drive home at night and I would have to put on my shining armor and drive my mighty steed (Ford Ranger) to pick her up. We had very little free time as a couple. At that time, she decided to put God first and her family (me) second in her life. School, work, and everything else is important, but not that important.
Now that she’s feeling better, she only works 2 days a week and we carpool, so she doesn’t have to drive herself. Working two days a week at the doctor’s office is the peak of her current physical ability, but she has the opportunity to help others with the same chronic condition she has.
Mobility
I searched on craigslist.org for a walker and a go-cart. (Yes, I call it the go-cart. Yes, I know I’m wrong. It is a mobility scooter. No, I won’t change.) I got the walker for $50 ($175 off) and the go-cart for $300 ($1,000 off). The walker helps her get around the house when she’s at her worst health-wise. The go-cart helps us get the shopping done, among other things.
Shopping
I used to get really frustrated when she said she had enough energy to go shopping, but didn’t. Invariably, when we got just about five items down on the list, she would need to quit and go home. I had probably 25 more things to get. It really made me angry sometimes, but it wasn’t her fault. The walker and the scooter dramatically changed things. Now, for the first time in her life, she actually enjoys shopping.
Independence
To help her be more independent on her bad days, I installed a hand-held shower head in the bath tub and bought a shower chair. Now she can clean herself most of the time.
Comfort
We used to sleep on an incline, so there wouldn’t be as much of a change for her when she gets up in the mornings. This is a common treatment for Postural Orthostatic Tachycardia Syndrome.
Cooking
It is very important for her to be able to eat when I’m not home, even when she can’t stand up. If you can’t stand for more than a few seconds, you obviously can’t cook on the stove top. We try to get a good number of things pre-cooked and in the freezer for her to reheat and I’m not talking about “healthy-choice box dinners” either.
We like to do what is called “Once A Month Cooking,” or OAMC. We’re not very good at doing it regularly, but if you do it right, you can have wonderful dinners & lunches for very little cost, and it’s all home made! With OAMC, you create a plan, buy your stuff, cook all day, and then freeze it for later. Sometimes all day Saturday spills over into part of the day on Sunday.
When she’s desperate for some nutrition and doesn’t have the energy to cook, she uses the walker to get to the kitchen, musters what energy she has to get the food from the freezer to the microwave, and then sits down on the seat of the walker (or the floor) while it cooks. After that, she can eat right there in the kitchen. Some days, we use the bar stool in front of the stove or sink so that she can get some work done.
And I almost forgot – I do pick her up and carry her sometimes!
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While their story is somewhat like ours, it is also different. But we can relate to each other. It may sound like it’s not bad or days are full of exhaustion, but they aren’t. How does one keep going? By remembering the good things in life. Being thankful. Having an attitude of gratitude.
This does not mean there are always smiles and rainbows. Or that there is not. It means we are there for each other, and others are there to help us get through emotional humps. They listen as we let things out – to process them in our own minds. Friends, relatives and each other keeps us grounded. For every bad day, we know a day will come and it will be better. But we may have to remind ourselves.
Not every day Charles like’s his job as a caregiver. And most days I’m not thrilled to be a patient. But for now, this is how it is, and we always keep hope …. well, lately we’ve realized that keeping hope alive might not be the best, as there are great disappointments. But hope that our future can still be bright. And offer hope to those beginning their journey, and hope that God understands our feelings.
If there is no hope, the spirit is numb. Words and actions can take away hope…..they can also give hope.
God doesn’t cause us to go through things that are like this, but He allows. We learn, we grow, and so do others. So in its self, wouldn’t you call it a gift?
Cathy 2015
