The Pit of My Stomach
Feb 20 2013 in Caring for Spouse and Kids by G-J
There is so much more to caregiving than what meets the eye. To begin, a family member or friend you love enough to help and care for has a health problem that necessitates your assistance. This doesn’t go away. Despite everything else going on in your life, the ill health of someone you dearly love is always there, in the background, no matter what else is going on in life. You are in a car accident, it’s there. You win the lottery, it’s there. It’s not like it’s the only thing you think about, but it is there.
Lately I’ve been able to push our caregiving situation to the back of my mind. Steve’s been doing the best that I’ve seen him doing since our adventure began in October 2009. When we saw the neurologist in December, the doctor said, wait, let me get my notes here, there was “significant improvement” in some areas. One area “improved dramatically” which the doctor said were “not small changes”. Based on these statements, I thought that Steve wasn’t doing worse, and in fact, was maybe (hedge word here) doing slightly better.
Late last month the short version of the annual paperwork arrived from the insurance company. It includes one two-sided form for the doctor to complete. You may think I’m nuts, but I was wondering what the doctor would say since Steve was doing so well.
The neurologist was very prompt in completing and returning the paperwork which arrived last week. It was a beautiful day and I was weeding the garden when the mail was delivered, so I sat on the front step to see what had arrived. I opened the fat envelope from the neurologist and did not read anything resembling what I expected. I now think envelopes from the doctor are the opposite of college acceptance envelopes. (I’ll let you know in a year if college acceptance and rejection letters are still mailed.) Remember how a fat envelope from a college was good news, meaning that you had been accepted?
I flipped through all the pages, many more than the two I had e-mailed to the doctor’s office, and my mouth hung open as I read words like, “worse.” I was surprised when I read that the type II diabetes my husband had in 2006 was resolved. It’s especially good news since, to my knowledge, Steve has never been told he had diabetes!
I piled all the mail together and took out my frustration on the weeds in the yard before our son came home from school. When he arrived we went into the house where I heard about his day while he ate nonstop and drank a couple of glasses of Gatorade. All the while that paperwork was bouncing around in my head.
An hour after reading the mail, I was feeling better. I rationalized that the doctor sees Steve for a short period of time. The report is like a snapshot taken of a moment in time. I see Steve all the time and, due to that, what I see over time may not agree with what the doctor sees. Of course I know better than the doctor! I was able to move on from the paperwork and not let it bother me.
Monday I realized I really needed to get the paperwork sent off to the insurance agency, but not before I scanned everything into the computer. I got smart and set up a file into which each page went. I labeled each page in the computer as I scanned them so that the information would be easier to find in the future.
Glancing at the paperwork as I scanned it made me feel the way I imagine it would feel if I had been punched in the stomach.
Steve was at the local college working on a play when our son, who got his driver’s license last week, asked if we could go out for a drive. He can now drive by himself, so this was very unexpected. I was taken aback, and was thinking that I didn’t feel like doing anything, but was happy that our son still wanted to practice driving with me so I said we could go for a drive.
I finished scanning all the paperwork and had a pain in the pit of my stomach. We went out for a drive and I thought how my son’s driving wasn’t causing my stomach to hurt.
The pain in the pit of my stomach lasted for the rest of the night. I started typing this Monday night and am finishing it Tuesday night. Once again, I have a pain in the pit of my stomach.
Denise said on February 20, 2013
Ugh.
Ugh.
It’s tough because you read and digest the news alone. It’s awful because you wonder if you’re not being realistic. It’s scary because you think about the future and what could happen…
It’s soooo hard to get good news in caregiving so when you do (and you did in December) you hold onto it.
I love that you scanned the report. That, G-J, is courage.
You have good news that you can keep. You have a husband you love who has taken control of a tough situation. You have a son who’s doing so well. You are wise and strong. You have a good life. No stack of papers will ever change that.
Jo said on February 20, 2013
@G-J,
So sorry about the pit in your stomach. Agree with @Denise that this must have been tough to process alone.
You said something though that resonated with me, and not in a way that you may realize. You said, “I rationalized that the doctor sees Steve for a short period of time… I see Steve all of the time… I know better than the doctor….”
Correct me if wrong but it seemed like you said it sarcastically, but I’d respond with a resounding, YES YOU DO!
I recently read an article on mental illness and parenting titled,
“Be an Expert of the Child in Front of You”
which encouraged us living with a loved one with a medical challenge to not overly focus on the labels and diagnoses; know about them, but don’t be captured by them. Instead, “be committed to being an expert of the person in front of you.”
Your post reminded me of this. The package you received WAS a snapshot. It likely provided accurate information within a specific frame work but your reaction speaks to me that you have other information. As you said, YOU live with Steve. I think it is noteworthy that you didn’t have reason to be alarmed before receiving this report.
Easier said than done but try not to let it define you guys. Experts have great value and have great limits. Sometime you DO know best.
@gail said on February 20, 2013
Hi G-J,
I hear and see you in a steady light. You are like a flame of a candle with a constant glow keeping your husband and son living and growing alive.
I don’t know how you do it, G-J. God bless you and your family. They are constant too due to your glue who holds them all together.
ejourneys said on February 20, 2013
(((Hugs))), @G-J!
I agree with Jo. The doctor’s report is like a single dot in a line. It is not a trend. It really is just a snapshot. What you experience is much more holistic and much more powerful.
I love that you scanned the report, too. Not only is that courageous, but it gives you context, something against which other reports and your own observations can be measured. And I am thankful for those weeds for giving you an outlet after that kind of news.
It is still such tough news to receive so unexpectedly.
You are not labels or diagnoses. You are people. You are more than the sum of your parts. You are a family filled with love and doing extraordinary work.
G-J said on February 20, 2013
THIS is what I love about caregiving.com. I can come here and tell you what’s going on and you get it! Not one of you commented that YES, I was nuts because I wondered how the doctor would phrase the positive news in his report.
@Jo, I appreciate your input and observations. I was sort of wondering if my observations even count since I’m not the medical professional.
Thank you all for your support and kind words.
Kathy said on February 20, 2013
G-J,
Love that you scanned the report and are so organized!
But UGH that stomach knot! News that catches us off guard is so unsettling for days sometimes.
But you say this report is for insurance paperwork?
What would it have meant if the report came back improving? Just curious.
Sometimes because I’m with Hubby so much that unless the declines are really big I actually do not see them like someone else does. I only see the new normals especially when it’s small declines. To an outsider they look big. Could this also be the case with the Neuro and specific things he was looking for?
I also agree with those statements by those above, concentrate on the positives you have and are
You’re an amazing woman, mother, wife and friend.
G-J said on February 20, 2013
Kathy, I had the same thought even when I sent the paperwork to the doctor. What if he said Steve had improved slightly? What would that mean? Even with improvements, it does not mean that Steve could return to doing his prior job. But how would an insurance company see positive comments?
And I’ve also been thinking that what a doctor looks for and sees in not necessarily what a wife looks for and sees.
Thank you. And so are you!
@gail said on February 21, 2013
Dear G-J,
I’ve been thinking about what others have said and your response. Yes, we think “wow! I thought I or my loved one was better!” But? Then? After all? The insurance won’t pay for such and such then. Or will I lose some coverage because of my loved one’s improvement. Etc.
We worry. We think constantly about our loved ones in the back of our mind. In the backgroud. It’s like accompanying music of an elevator. It is always there.
At least that’s how it is with me. When will the other shoe drop? Do you know what I mean, G-J?
Ah, yes! You know!
Pegi said on February 21, 2013
“what a doctor looks for and sees is not necessarily what a wife looks for and sees,” resonated loudly to me. I agree with so much of what our fellow caregivers have said. You are brave and strong; and know your husband better than anyone. Enjoy the bits of progress you’ve seen. God Bless you and your family.