The “C” Word - The Next Chapter, Day 22 - Feeling helpless

The one thing that most spousal caregivers, and probably all caregivers regardless of relationship to the patient, is the feeling of helplessness.  We watch our loved one suffer from a myriad of symptoms over the course of time.  Some are not too bad – and others are just wretched. 

For the most part, George was “asymptomatic” of disease prior to the initial diagnosis.  Since his first surgery, he has had issues, but still remained asymptomatic – until June of this year when he experienced bouts of nausea and vomiting.  That was worrisome for both of us.

Over the course of the past few years, however, I have watched a once creative and talented man unable to participate in projects he once loved to do.  The lack of physical stamina has taken a toll on him.  He is tired just about all of the time. 

On the day he had his kidney stone attack which led to this PMP diagnosis we had just purchased wood for a major project, a double Adirondack chair.  That wood still sits, untouched, in the garage.  We move it from side to side on occasion to access the cabinets that it is leaning against.  Other than that, it is so far outside the realm of what he can do that we don’t know if he will ever get back to it.  He has managed just a couple of very small projects in the past 8 months or so – but even those had to be done in small segments. 

Most days he sits in his recliner, reading the news on his iPad, maybe watching a television show or having the TV on for background noise.  A quick errand here and there.  But mostly, he has only the energy to sit.  He “complains” that he is tired of being tired.  He is tired of the sometimes incessant trips to the bathroom as he juggles anti-diarrheal medications.  In June he experienced such severe bouts of vomiting and nausea that he has cut way back on eating. Sometimes he fears eating because he doesn’t know if it will stay “in” and sometimes when he eats he just doesn’t feel so great. In fact, he has noticeably lost more weight in just the past two weeks.  Verification is shown on the scale which shows he has lost at least 10 pounds in that short amount of time.  It is a horrible time for him.  He doesn’t feel he can go too far from the house because he never knows when he will need the bathroom.  He went with the granddaughters and myself to the movies yesterday even though he wasn’t really feeling too well.  He had to get up three times to use the restroom. 

When we see other people, friends at church, etc., they will all say he “looks good”.  His color is good, he is pretty lean these days - - but that is on the outside.  On the inside he is waging war with this incredibly hard disease.  At home he is tired, he is frustrated at his lack of being able to do just about anything, he is quiet.  There are moments of laughter sprinkled here and there.  I can tell he is trying not to let this consume him, but it does consume him. 

And I feel so helpless sometimes.  I mean, I know that my physical presence brings him much comfort.  I know that he enjoys having his “bad arm” massaged (the one that suffered the most after his neck surgery) and having me rub his forehead to help him get to sleep.  But I can offer no comfort from the rage of diarrhea or vomiting when they occur.  I can do nothing to ease the belly pain or the exhaustion. 

I imagine it is the same for many others who are taking care of loved ones.  I take note of other husbands and wives on our PMP Facebook group who are in the end stages with their spouses.  They vent their sorrows and fears with the group as their battle is waged with rounds of chemo (there are different diagnosis where chemo is done before and/or after HIPEC) or as they slowly lose their battle with this disease.  My heart goes out to them.  Their battle seems tougher than mine and I suppose I should be grateful for that.  In reality, no battle is any less nor any harder than the other.  They are all difficult and complex. 

I have to remind myself to turn my feelings over to God to handle.  Any fears or frustrations I may be experiencing – I have to give them up and just know that He will never give us more than we can handle.  Sometimes it just feels like he piles more on than is necessary!  (And I believe the phrase a friend from church used recently is along the lines of:  I just wish God didn't have so much confidence in what I can handle!)