Thursday, July 23, 2015

routine

I’ve gotten so bogged down in the daily routine that I haven’t taken the time to stay connected to my best friend. Since I think about you and what you might be doing on any given day, I just assume that you are doing the same and that for me accounts to meeting and having lunch together.  Our imaginary conversations can get quite involved and they have thrown us out of a few places because we laugh too loudly and 
too much.  I hope you enjoy those imaginary lunches as much as I do because they will have to do for awhile.

Mary’s recovery is going very slowly.  She’s been home for three weeks now and doesn’t seem to be any better now than the day I brought her home.  She still has a lot of difficulty with eating even though her nausea has been somewhat under control for some time.  But her stomach refuses to accept most of what food we’ve tried t get into her.  Last week she was so sick and in so much pain that eating anything was a pipe dream.  She is losing weight everyday.  The continued weight loss is the thing that worries her doctor more than anything.

So she insisted when we saw her doc last week that she needed to have a feeding tube put in so she could get some nourishment.  She is convinced that she is dying from malnutrition. So the doctor gave her several options for installing the feeding tube and she chose to have the endoscopy procedure where the tube is pushed down through her nose and throat.  She thought that would be the least painful and most effective. The object was to place the tube outside her stomach, going straight to the intestine with the nourishment since the doc figured that the food going into her stomach when she ate anything was the cause of the nausea.  She was wrong about the nasal tube being the easiest way to go.  She found that she couldn’t tolerate that foreign object in her nose and throat and after four days she begged to have it removed.  The result of all this dancing around, I think, is going to be a new feeding tube surgically installed into her stomach.  Just what she wanted to avoid.

Of course, having the feeding tube put in with her being at home and not in the hospital or a nursing facility, got the insurance company off the hook. Nothing was covered by insurance.  We had to rent the pump and other apparatus from the medical supply company that the Homecare Agency uses and buy the liquid food that gets pumped into her.  Two cases of food plus the all the gizmos to make it work will set us back around $1300 for just one month.  But since she only used four cans of the food and had the equipment for less than a week, we are hoping we can negotiate a lower price for it all.
So we are back to square one as far as eating and getting the healing over with and regaining some strength so she can at least get from the bed to the couch without getting winded.  

Mary is supposed to take her blood pressure, her oxygen level and her weight every day using digital equipment supplied by the Visiting Nurse Homecare Group. Those digital readings are sent wirelessly to their monitoring station where they are recorded and analyzed.  Then someone from the nurses group calls to verbally get the same info from her.  That way they have a couple ways to check up on her everyday.  Then twice a week a e visiting nurse stops by to see her to check vital signs and do whatever needs to be done for her.  Also twice a week a nursing assistant comes to bathe her since she is not strong enough yet to take care of herself. I have to say I am impressed by the quality of the car she is receiving. 

Mary hasn’t set foot outside except to go to see her doc since she came home. I fear she is going to become agoraphobic if this lasts much longer.  She absolutely refuses to see any of her friends.  She is embarrassed by the way she looks and doesn’t want anyone to see her like this. Her closest friends are begging to come visit her, to cheer her up and show that the care about her. But she isn’t buying it. I can’t force her to be sociable any more than I can shove food down her throat.  So our days are spent in isolation indoors.  At least I can still open the shades without argument. 


So this has been the summer from hell so far.  I try to keep a positive attitude and continue to mutter the mantra “one day at a time.”  I admit that I am getting tired of this sickly routine.  My frustration and worry have caused all my physical problems of late as well. If Mary is having what we consider a good day ( being able to keep a little bit of food down, doing a couple or three laps around the condo using my walker, talking on the phone, and not using many pain pills) then I will have a good day.  If she is having a miserable time that day, then I can look forward to stomach cramps, increased Parkinsonian symptoms, trouble breathing, and any number of other things that can go wrong.  When I get like that, I feel so helpless and worry that I won't be able to take care of her.  Worst of all, we don’t laugh anymore.  This medical stuff ain’t no picnic.

good people

Imagine my surprise when I opened the door to stick my nose out into the weather so I would know if I needed a sweatshirt to go with my t-shirt.  I was thinking, "no, it's warm enough now at 7:30 so even an old guy like me who is always cold would be plenty comfortable later on this morning when the sun is high and the breeze off the lake will complement the warmth that my nose promised."  I think I even had my eyes closed so that my heat seeking judgement would not be compromised by the wide-eyed amazement I feel every time I look at the incredible landscape that surrounds us: the shimmering lake reflecting the morning sun, the distant clumps of greenery that are  the summer trees across the lake, swaying wetland grasses that divide the lake into many separate puzzle pieces that your eye must assemble,m  the floating garden of lily pads that hugs the shore and extends out into the lake looking like a carpet to be walked on, and the incomparable light that embraces everything that gets in its way.

Once I had my nose confirm what the thermometer said, I was free to open my eyes, satisfied that I got the right information and could confidently skip the sweatshirt.  With my eyes wide open, I got that first peripheral hint that something wasn't quite normal.  You know, the feeling that someone has at some point invaded your space and,teasingly, left some bit if evidence of their invasion.  I glanced around, not quite sure why, and saw that on the other side of the walkway that the Hostas surrounding the stone bench that the semi-naked cherub stone statue was hiding behind, were in their midsummer deep green glory. So nothing amiss there. Farther down the walkway, just as you would expect, the Fountain Grass was dancing and swaying with the freshening breeze. The tall stalks of the Day Lilies, now with the last of the flowers ready to
fall, looked somewhat forlorn, now that their blossoming was mostly just a memory.  They were drooping a bit as if begging for one more day. All seemed as it should be. I was content that the vibe I was getting was benign and not something that would cause me trouble.

Still, as I was about to close the door and retreat back to my favorite place at the table where my first cup of coffee was cooling, I felt the strong and irresistible urge to look down. And there I saw why the hairs on the back of my neck had been bristling, the reason for the breach in my aura. I was immediately filled with such a sense of gratitude and awe at the generosity of my neighbors that I had to wipe away a tear. There on the stoop was a stack of various baked goods--loaves of bread, sweet rolls and Danish, a pecan pie, and a tray of cinnamon rolls. All these people, who had found out about Mary’s hospitalization and health problems through the neighborhood grape vine, had left these tokens of their caring and had acted on their impulse to help in some way.  I don't even know who left this "manna" from heaven.  There was no note or card attached, so I don't even know whom I should thank. 

Moving here to this condo complex has been a daily reward.  We are surrounded by friendly people who always have a happy hello a friendly wave. I only know the names of a handful of my neighbors, yet here they are, bringing us food and offering to cook whole meals for us. Several have even volunteered to drive us to the hospital if the need arises.  I feel like we've been blessed a thousand times more than we deserve. My faith in the generosity of spirit and the inherent goodwill of people has been given a real boost because of the kindness of these  strangers.  When my turn comes to do something nice for someone who could use a jumpstart I won't hesitate to jump in and do what I can because of the example set by tenses wonderful people. 

PS:  Jean, the corn chowder was great. Sandy, the turkey and gravy and cake and brownies were more than I could ask for.  Donna, you make the best red pepper soup I’ve ever had.


PPS: Tom you could make a great living as a chauffeur.  Rich, I know that I can always count on you to be there for me no matter what the circumstance.