Friday the 13th – Just trying to keep it together

I knew a few days ago something was brewing but hoped he would snap out of it with extra sleep and nutritious meals but Wednesday and Thursday night urine incontinence in bed started the screaming in my head to do something. Down here the doctors offices close at midday on Friday. Also knew his PCP was on vacation this week. So had to get something ordered before noon on the day that I had my long delayed PCP appt. at 10. At 8 AM, did a uti test strip; leukocyte pad somewhat discolored after I figured out the proper orientation of the strip and chart; called walk in LabCorp to find out if possible to drop off urine sample but NO need doctor’s orders; called his PCP office asking if they could just fax an order to LabCorp but NO he had to be seen by substitute doctor who had openings only at 10:15 and 11:15; his impatience was mounting because he wanted to get going to “work”; called my PCP office before 9 AM, service answered, I’ll call after 9; decided to reserve 10:15 appt at his PCP which is 5 miles from the house; it’s 8:50 and I ask how about we stay home until appt instead of driving downtown 20 miles now and then driving back up within 10 minutes but NO growl, complain, before he could say this is why he needs to drive again, I said, no problem I will do whatever it takes; drdrpop him off at 9:22 and leave to get coffee and return to pick up at 9:49; called my PCP 5 more times after 9 still got service; finally got thru and asked if doc could see my husband instead of me at 10 but NO doc doesn’t see walk ins and will have to transfer his care; cancel my appt; drive 15 miles back up road and he can’t pee; drinks 3 cups of water, show him suggestive photos in people mag and off he goes to bathroom but NO pee for 10 minutes; we leave, take sterile cup to fill later at work, give me orders for STAT urinalysis, deliver to lab expecting a major eruption from hubs at any moment in doc office but NO calm as clam and even apologetic for not being able to pee and no nastiness about taking him to doc; on highway not 5 minutes later …I decelerate from 80 to 0 mph in 5 seconds, drive over the rumble strip, cover him with a towel but NO nothing comes out; 5 minutes later on city street commotion starts again, pull over, pull out, get some in cup … while a very curious person walks by looking into the car while I drape a towel over the scene of the crime; put everything back in its place merge back onto street and drop him off at work; one of his students leaving to get lunch wanting to know how appt went while I’m waving my hand behind husband head to alert kid to shut up and keep walking but NO he stands in front of door while hubs gets out …   drive away stopping student to ask if he noticed any changes over past few days but NO everything seems fine to him; head over to lab and indicate I have a STAT sample but NO docs office didn’t write stat so frantically called to get STAT fax STAT before 12 when doc office closes; STAT STAT fax faxed but NO receptionist for 15 minutes so I open and close front door several times to set off dinger but NO one shows up; finally she returns and ready to hand off sample but NO I have to place it in special transfer sink so pathogen protected person can process; stop at restroom so I can pee!!! and really want to drive 20 miles home, sprawl out on couch and do coma cuddle time with Chaos but NO I’m too jittery to drive, forgot to take morning meds that require me to consume 500 calories, changed lanes earlier and don’t remember how, want to burst out bawling, screaming, kicking but NO quietly park myself at bohemian college cafe until time to pick hubs up at 5. STAT results take 5 hours, lab hopefully contact on-call doc to contact me but NO this time it won’t be UTI but something needing rush to ER but NO won’t know until middle of the night …

I know something is wrong and I think my sweetie knows it too because he didn’t blow up once at doc office or after. Just uncharacteristically apologetic even telling student he might have a problem. Unheard of…

I would have to be involuntarily committed if this support group didn’t exist.

 

Posted 6/13/14 on alzconnected.org.

 

One Lung – Still Smoking

Over the past two years I have been adjusting to caring and living with my sweetie who has had 3 brain surgeries for non-cancer disorders (normal pressure hydrocephalus, 2 traumatic brain injuries, and a subacute subdural hematoma that shifted the midline of his brain by 14 mm). Our love and lives as we knew them, shattered. To everyone he seems recovered and appears to be a miracle of modern medicine. Only I am privy to what’s really going in with his cognition and physicality. There is no satisfaction in trying to convince friends and family of his progressive decline. Few seem to get it. I have transformed into a person that lives day by day or as I joke, from one meal to the next. I visit my past to find comfort in fond memories of my life experiences rather than add fuel to the fire that burns in my soul when I think of the mistaken, overlooked and ignored symptoms, diagnoses, treatments, etc. The future is filled with doctor’s appointments and more uncertainty that I am comfortable with. Here’s the narrative that describes the extreme conflict I feel and desperately want to resolve hopefully with your valuable insights.

My sweetie was diagnosed in 11/2013 after a heart ct scan and had a right pneumonectomy in 12/2013. He will be starting a course of adjuvant chemo this week. HE IS STILL SMOKING!!! Probably 2-3 cigs/day. Whenever asked at doc appts he says he quit on the day of surgery but this is not the case. He has always been a “closet” smoker. His clothes and breadth don’t give him away. At post surgery appts. he denies smoking and I just sit there and “smoke”. On occasion I have challenged him directly or said something to the docs, nurses in the hallway. But they don’t seem to respond with any guidance, warnings or questions other than he needs to stop smoking.

DOES IT REALLY MATTER IF HE CONTINUES TO SMOKE??? I have several thoughts. If it doesn’t interfere with his treatment i.e., endanger chemo effects, etc., is it okay to just ignore it? I see no benefit to our already modified relationship to continue to coach, harass or contradict him. Then I think about what one (of 3) of the cardiothoracic surgeons said during consultation, “If you don’t quit smoking today, don’t put yourself through surgery or “waste our time” and enjoy the next 3 years of your life.” Is there a moral, societal or financial imperative to get him to stop smoking? What does his ongoing smoking tell me about his will to live and how he feels about our future?

So I reflect on my poor health behaviors. I overeat and have been on a weight yo yo most of my life. I am being treated for various cardiac risk factors yet I still stuff my face with high calorie treats. 6 months ago I thought I got a grip and changed my eating and exercise habits. Soon after sweetie’s surgery I slipped back into old habits and despite being conscious about reversing the weight loss and fitness achieved and re-aggravating the risk factors I remain unwilling to turn things around. Would it be justifiable for a heart surgeon to say, don’t have bypass surgery if you don’t go on the Ornish diet now? Keep eating everything and enjoy the remaining years of your life. OUCH! It kind of upsets and comforts me that I cannot really see a difference between his chronic smoking and my chronic overeating.

My current approach is not to interfere with his smoking, to stop contradicting him when he gets positive feedback for “quitting” and let him do what he wants to enjoy the remaining years of his life but continue in my role as his caregiver, advocate, wife and lobbyist for the best medical care I can find for him.

Posted 2/18/14 on Inspire.com.