This is a post about my Mom and me . . .and food. It will be more of a personal post, that I hope you will indulge me by reading. I am writing this for me, but I am sharing it with you, because it has to do with food and how my views of it are changing, shifting and morphing. Foodie is growing up.
Exhibit A: After months of not being able to read the words on my computer screen past 10 pm, I have finally broken over and bought a pair of +1.00 reading glasses. Welcome to the beginning of the end of my eyesight. But, let me tell you something, if you have a sexy librarian fantasy, you should see me in these specs. Hair pulled back in a loose bun with a pen stuck through it holding it up off my face as I bend over the computer screen to read it. I am foxx. Yep, with two xx's.
Right now, food is my passion. I go to bed thinking about it and wake up the same way. Never has food been more important to me than right now. I am putting all of my eggs in one basket. I am now attempting to make a living from eating it, serving it, recommending it and writing about it. No safety net. In the words of Gary Vaynerchuk it's time for me to "Crush it". (Which by the way I am both reading and listening to on my iPod, right now. If you know Gary, you know you have to hear Gary to get it, and him.) So, I've incorporated . . .Foodie LLC. Thank you. All I can say is Legalzoom.com is a wonderful thing.
Writing about food and what is going on in the food scene in Kansas City and beyond is truly a pleasure, but it has been one that I have had little time for lately. Part of it has to do with major changes in my own personal life, and now my focus on getting my company up and running, but they also have to do with changes in my Mom's health. My Mom was diagnosed with ALS or Lou Gerhig's disease last July, but we think she had been dealing with the disease at least a year before she was diagnosed. It is terminal. Most people live 2-5 years after they have been diagnosed. As it is described in all the medical literature: "People with ALS experience a loss of muscle strength and coordination that eventually gets worse. This eventually makes one unable to do routine tasks such as going up steps, getting out of a chair, or swallowing. Breathing or swallowing muscles may be the first muscles affected. As the disease gets worse, more muscle groups develop problems."
My Mom's particular brand of ALS has also come with a mild dementia, which honestly will be more of a blessing as her disease progresses. Right now, it just means that with no governor on her thought process, there have been some pretty hilarious things coming out of her mouth. When someone recently asked her how she was doing, she looked up at them and said "I am delicious, thanks for asking." My Mom takes after me.
When I heard the news about her condition, I was at my brother William's apartment in Dallas. I was on a pit-stop on a road trip to Austin. I had just arrived at his apartment when he told me of Mom's ALS diagnosis. I was in shock, and I tried to contain the crying to be brave for William's sake. We called Mom and my other brother Chris, and talked and cried until I was both hungry and thirsty. My brother then took me out for dinner that night, and we both sat and ate and tried to digest what ALS really meant for Mom and for us, as her children.
My brother Chris, (the fireman)(seen here with me and Mom and his daughter Special K!) and his wife, Andrea, (the nurse) are the day to day care takers for Mom. They both have had medical training and they live just down the street from Mom's house. They are on a much deserved vacation this week and I have come to fill in for them and care for Mom. Which means I needed to learn how to use her new feeding tube. These are the 10 Steps or instructions my brother left for me to follow to feed my Mom:
Step 1) Have Mom sit on her couch and place a towel on her lap.
Step 2) Take a her feeding tube and pull the cap off at the end of the tube.
Step 3) Unlock the clamp that is on the other end of the tube. To unlock clamp, pull back on the taller portion of the clamp to release the depressed portion. Keep the open end of the tube higher then her stomach when you open the clamp so that her stomach contents doesn't pour out. (WHAT???)
Step 4) Put a 60 cc syringe into the open end of the tube. Slowly pull back on the syringe to check stomach contents. If 60 cc's of fluids are drawn out, this means Mom's stomach is too full to have a feeding. If this is the case, slowly push the syringe back down to push the contents back into her stomach. There will always be a little bit of content that comes out. As long as it's not a lot, then she is ready to be fed. No matter how much content comes out, always slowly push the syringe back in so that the content returns to her stomach. After you have pushed the contents back into her stomach, press the tube clamp back down, locking it into place. (I am feeling a little faint!)
Step 5) After you have checked her stomach contents, you now need to flush the tube. Remove the plunger portion of the syringe completely. Insert the syringe back into the open end of the tube, holding the syringe upright and at about the level of Mom's stomach. Pour 30 cc's of room temperature water into the syringe. Unlock the tube clamp and the water will slowly drain into Mom's stomach. The syringe is basically being used as a funnel at this point... letting gravity take the water into her stomach. The higher you hold the syringe/funnel the faster the water will pour into her stomach. This is why you want to keep the syringe/funnel at Mom's waist level so that it doesn't drain to quickly.
Step 6) When the water has been emptied from the syringe/funnel, but there is still water remaining in the tube, clamp the tube back off. Now you will feed Mom her nutrients. Pour 60 cc's of nutrients into the syringe/funnel. This will basically top off the syringe/funnel because they are about 60 cc's. Each syringe has numbers like a measuring cup so you will know exactly how much nutrients you are pouring in. After 60 cc's of nutrients are in the syringe/funnel, open the tube clamp and, again, keep the syringe/funnel at Mom's waist level and watch the nutrients slowly pour into Mom's stomach. Again, keep the syringe/funnel at about waist high so that it does not pour in too quickly. This will take about 2-3 minutes until the syringe/funnel is empty. When the syringe/funnel is empty, but there is still nutrient in the tube, clamp the tube back off.
Step 7) Pour an another 50 cc's of room temperature water into the syringe/funnel. Re-open tube clamp and again have the syringe/water at Mom's waist level and allow gravity to pull the water into Mom's stomach, thus you will be flushing the tube clean.
Step 8) When the syringe/funnel is empty of water... allow most of the remaining water in the tube to drain into her stomach. When most of it has drained into her stomach, clamp off the tube and put the cap back on the end of the tube. It is perfectly fine to leave a little bit of water in her tube when finished.
Step 9) Rinse out / wash the syringe, plunger and everything else so that it can be used again. Put some tin foil over the open / unused nutrient formula and put can in the refrigerator.
Step 10) When it is time for Mom's next feeding, remove open can from refrigerator and let it sit out for about 30 minutes to get closer to room temperature before you funnel it into her stomach.
Perhaps you can see why my non-medical training . . .made this relatively simple task (now that I have actually done it a few times) extremely daunting. But, I knew this was something I was completely capable of doing and as I re-read these instructions I could visualize each step in my mind. I knew with a little practice I could absolutely do this one thing for my Mom. I could feed her.
Mom can still eat by mouth, but most of her nutrients and calories now come from the feeding tube, 2-3 times a day. As I watch her sit and enjoy a cookie and some juice as her "dessert" by mouth, I am struck by the difference between eating for pleasure and eating for sustenance. So much of what I am lucky enough to write about and talk about is wrapped around the pleasure of eating, my Mom is now "eating to live."
The other thing I realized is that getting the opportunity to feed Mom via her feeding tube is not as alien or strange as I imagined it to be. Feeding someone is a very intimate act, whether it is via a feeding tube or not. Feeding my Mom, gives me a chance to sit close to her and talk face to face while she "eats." It is socially no different than if Mom and I were sitting across the table from each other sharing a meal and getting caught up on our day.
The only other thing that I found humorous in all of this, was the fact that Mom no longer kept food in her house. So, literally, there was nothing in her house for me to actually eat for my meals.
As a friend said to me about my experiences feeding my Mom via her tube . . ."right now, you are getting the chance to do this one thing for the woman who at one point fed you."
You know what, my friend was right. I am feeding my soul, and my Mom, at the same time.
I love you, Momma. XXOOOXXX
What a wonderful entry. I'm truly touched. Thanks.
Posted by: Bob | June 08, 2010 at 03:35 PM
This is a lovely post. As a nurse, I can understand your trepidation, but do know that you will never regret the learning of the technique and the ability to spend this face time with your mother. Good for your brother taking on this role with his family and good for you for giving them a much deserved break.
Posted by: Rebecca James | June 08, 2010 at 04:32 PM