So here’s today’s mutt shot – I will try to do something cute every day but like my retrieval skills, I may just absent myself for a while.
In this photo, I am trying to figure out what to do with all the 100# doggy biscuits my neighbor has given me that my mommy found hiding throughout the house and put back in my toy collection. My jaws aren’t strong enough to eat them so I put them places my humans will mistakenly step or sit on them so they get crushed into small pieces that I can eat. As you can see, my humans haven’t been very cooperative lately since there appears to be a large inventory of large bones! Also, those are my favorite toys – one legged elf; patchwork alligator and some kind of mutated tennis ball with false teeth that squeaks.
So you want to know what breed I am. Well I wasn’t around when it was decided but from what I’ve been told, in the beginning there was a cocker spaniel who met up with a schnoodle (schnauzer/poodle) or a schnauzer who hooked up with a cockapoo, or a poodle who met a schnocker in a blind alley but my favorite explanation (yes I’m a dirty old man) is a cocker spaniel, a poodle and a schnauzer – well I won’t go there but I know you humans have an imagination. No matter how it all came to pass I turned out to be a cockerschnoodle, so I’m told.
Some very nice people took my inheritance and gave me to a family with 2 young girls who I could tell were a bit untamable but that was very attractive to me. I don’t remember much of my puppyhood but I’ll never forget the day I met the mommy I was here to rescue. You see, those girls got older and wilder. They would let me dart out of the house and run around the yard but they didn’t close the gate or fix the holes in the fence.
It was a beautiful day when I was galavanting around the neighborhood and thought I would go direct traffic in the intersection of 2 main roads around the block. What could happen to me. Two sides had stop signs and the other road had a few hundred yards of visibility so of course anyone who saw me would slow down and follow my commands. You don’t have to be Pavlov’s dog to figure this out. A big white car pulled off the road and this nice lady opened her window I think to ask for directions but I was focussing on the spiffy, red sports car that just stopped at the stop sign. With all my masculine charms, I wagged and pranced until this Spyder pulled over and opened her door. I jumped right into her web. Before she could devour me she felt it necessary to find out a little more about me since I wasn’t wearing my dog tags, I was a bit randy and my dysfunctional family never got me one of those exquisite chips that the NSA would realign a satellite to locate me.
My spyder lady drove up and down some streets looking from side to side and not watching where she was driving. I was getting a wee bit nervous. Finally she gave up and she did something real strange. She started driving back towards the big city where she had just come from. I tried not to project what was happening but I was hoping that we were going to go to a Starbucks for a puppaccino and pupscotti. Well this big city didn’t have a Starbucks. Instead she pulled into a spa and carried me in to ask if any of the lovely ladies recognized me. I thought I was the center of the universe for a moment until they said, we don’t know who he is but he is so cute and someone must be missing him. No don’t say that!
Back into the spyder we go and now she’s driving further away from the big city to, oh my, that place I was taken once where they put a pole in my butt, pulled it out and looked at it as if it were a rare gem. It must have been because they smiled and then took out a very long sharp thin object that they stuck in my foreleg while speaking in a squeaky voice that reminded me of the happy and carefree days I spent tumbling with my brothers and sisters. I’m thinking I’m toast but she does the same thing she did at the spa. I didn’t recognize any of them and the feeling was mutual but I think I was really lucky because the one squeaky lady who knew me wasn’t in that day.
Back into the web we retraced our drive to the intersection. My soon to be mommy looked perplexed and anguished. She drove across the road and then she saw THAT GUY who always walks the streets like me. Why did he have to be out this afternoon? I thought, oh no, I’m going to lose my seat. I calmed down because she didn’t open the door, just the window, and then my heart stopped because THAT GUY said I lived around the corner in the gray house!!! I tried to be as cute and cuddly as possible jumping onto her lap and resting my chin on the window ledge. She spun the spyder around and headed for the ugly gray house with those humans who think I’m a tennis ball.
Outside the house were several munchkins screaming and running around. I’m not normally like this but I tried to be the boss. As she carried me out of the web I clawed her supple chest so deeply but she was stronger than me. The screaming munchkins turned toward me and yelled, “that’s our dog.” Come on, I’m not a dog. Didn’t I convince anyone of that over the past hour of traipsing around the city. I could tell my soon to be mommy was not at all pleased with the commotion but how could she take me away from these innocent young children. I guess she had to do something motherly so she told them to get me a collar with some ID. Then she and her spiffy spyder drove off into the sunset.
Exactly a month later I took my chances and headed back to the intersection. I could feel the vibrations of the 5-speed mid-engine red spyder coming toward the stop sign. There she was. I didn’t have to do anything cute. She immediately pulled over and let me jump in. I was so happy until she turned down the street heading to the haunted gray house. What a relief, no one was home. Okay, Okay let’s get out of Dodge! She started fumbling for a piece of paper and a pen and wrote some kind of thank you note to the dysfunctional family and then we drove off into the sunset.
I thought what a life. Quiet, cool, gourmet food, my own bed, and then this long legged blonde came home. I think she was worried about how he would react to seeing another man in the house. I was proud to see that she learned some of my tricks and mustered up her feminine guiles, strutting, squeaking, stroking and finally long legged blonde who she called sweetie smiled. I would like to say the rest is history but it really is still her-story.
I must have had the first full night sleep I’ve had in my 3 years. I rolled out of bed and she hooked me up to this neck brace with a long string. What was I supposed to do? Well I let her take the lead. We walked around her neighborhood and I became intoxicated by the panoply of pooch parfums and consumed as much of that sweet green carpet that I could. Then we went for a drive. This time she found a Starbucks but I could tell it just wasn’t coffee withdrawal that made her seem a bit agitated. She was waiting for something to happen and wrestling with something very important in her mind. She confided to me that if she could think of a clever name for me that would appeal to her scientist husband that may be he would agree to me moving in. But she kept drawing a blank. The words had too many syllables or were too difficult to spell. Apparently sweetie is challenged in that area.
Without warning this piercing annoying noise started and her pocketbook started shaking. I thought it was an earthquake or something. Frantically she plunged her hand toward the noise maker and said Hello. It didn’t take a yoctosecond for me to hear the voice of my dysfunctional mother. I was so dejected I had no energy to do anything cute. I kept still and quiet while my princess started to repeat, oh yes, no problem, I can do that, I’m so sorry, I understand, don’t worry and by the way, what’s his name? If I could make lightning strike, move the earth or drop bacon from heaven I would have because I knew I had finally achieved my existential purpose of rescuing this family that drove cars too young for their age, who had these weird rituals of sitting together for meals, and regaled me with a treasure trove of domination, submission and other toys I could orally fixate on.
Sorry I got a little sidetracked thinking about that moment. So you want to know my name do you. Well, I never witnessed a smile so wide, a laugh so deep and a tear so sweet, when she heard my name, CHAOS (she changed it from Kaos thank you very much.) Without even taking a breadth she called Sweetie in the sky and told him my name and I could hear his joy. Now sweetie always wanted a big dog. I’m just 20 pounds but I’m scientific proof that great things come in small packages.
You hit the nail on the head for me. It took me a while to process what you wrote and extrapolate to my situation as my sweetie is not as advanced but this dementia journey is one huge paradox. Here I sit at 4 in the morning and what do I do besides taking care of my bodily functions? I log onto alzconnected.org to soak up some strength to return to bed for more sleep. In comes my sweetie for his 2nd or 3rd trip of the evening saying he thought when he didn’t see me in bed I was downstairs PLAYING on the computer. Odd that he uses the word playing when I’ve told him gazillion times I’m on one of my support groups! No matter, I guess because he doesn’t object. I suppose he knows deep down that I need to be here – a place he cannot be but takes me to and leaves me. This is not what I planned on writing. Just another example of adjust, readjust.
I was not a homemaker and consciously decided not to have munchkins. I wouldn’t describe myself as career driven. My profession was satisfying and I had some pretty unusual life experiences with several different employers. I was not interested in management and don’t regret that. What I’m trying to say is that in a very non-feminist way I always invested my energies in making my sweetie number one in our marriage. Forgettaboud ironing his clothes though. He always had that sexy wrinkled look but I would always make sure that the house was stocked with his favorite foods, that his coffee pot at work never went empty and that his career came first. So I left places I thought I never would and moved to places that I never dreamed of being.
I guess this dementia ride is just another one of those places. This time it’s not “fun”, an adventure or a place I want to be. So again the paradox at a time in life when I thought I wouldn’t be as challenged emotionally and physically. When I thought that my anxieties about my future would diminish and I would be the most experienced at my “career” it all feels like I’m starting over not just when the dementia started but every time there is an interaction. There’s no predictability or feeling comfortable. Who but those going through this can imagine what it’s like. I don’t even know what it’s going to be like from moment to moment. I know it sounds trite but for me the greatest gift our loved ones have given us at this moment is leading us to this website to find each other. I can’t imagine how I would have survived without our connection. Those that did this before us without this or other support systems are truly super heroes in my book.
And because I can’t end this without some wise ass remark or sending God a thank you (nonbeliever) I just want to repeat my mantra, THANK YOU AL GORE FOR INVENTING THE INTERNET!!!!
Getting our loved ones to stop driving is a very difficult challenge. In my experience I was not confident that the doctors evaluating my husband knew and saw enough about him and his cognitive difficulties to take a firm position on whether he should drive or not. Heck his Neurosurgeon said that not letting him use a chainsaw was a marital issue! So on the driving I knew I couldn’t convince my Miata loving, former autocross champ to give up driving even using my expert powers of feminine guile. Plus I was worried, that he could possibly pass a DMV test given in our right to kill state vs one given in a state like California where doctors are legally required to report patients they deem dangerous to DMV and DMV does something. I had to trick the neurosurgeon into restricting his driving by quoting the most recent hospital discharge instructions. Once entangled he wrote a referral for a driving skills assessment that he had no knowledge even existed in his own hospital.
I was fortunate to find a driver rehabilitation specialist (a credentialed subspecialty of occupational therapy (OT)) who administers all sorts of standardized tests to assess cognitive abilities, reaction time, visual acuity in various lighting conditions, multiple distraction integration, etc. in the office setting. If he passed the office tests then she would take him on the road in a dual controlled car and assess his driving skills. It never got that far. He failed the office tests. The OT said he can try again in the future but I doubt that will ever happen.
It was not an easy experience to watch him take the tests. There were times I just wanted to cry and say, “stop already.” When he was told that he failed, he stood up, started yelling at me about how happy I must feel then stormed out of the office and left the building. Eventually he calmed down and no longer directs his frustration about not being allowed to drive towards me.
This may sound harsh but I feel that if my sweetie could drive on roads without other drivers or pedestrians I would gladly give him the keys and let him drive, crash, etc. but I don’t want to live with the memory of him harming or killing someone when I knew he was unsafe to drive.
Over time, he has accepted the reality. At least twice a week he says, “when I drive again…” More recently though he has expressed a desire to take the test over. He seems to link the end of chemotherapy with the restoration of approval to drive. He asked me to contact the OT but instead I said, “here’s her number so you can call and reschedule.” I notified the OT that my sweetie may call. It took about two weeks for him to call. The OT gave him some websites to practice cognitive skills before retesting. He went to the websites but had trouble accessing the exercises and asked me to set it up. Essentially I said that in order to drive again then it is important to do all the expected tasks by himself.
Here’s a link to the driver rehab specialist website that explains the credential and how to find one in your area.
“Answer as quickly as possible the first word that occurs to your mind,” said Dr. Carl Jung.
Hmmmm. And the answer is – this true story (human names changed to protect the innocent and the guilty!) Around 7 PM last night our neighbor came over with her dog Cocky to go swimming in the lake behind our house. She deliberately left her black lab, former champion birddog, Wall Street (aka The Street), at home because while he loves swimming he does not follow her commands. Five minutes later The Street comes barreling down the driveway with the her “responsible” 11 year old son in tow. The Street was so excited that he dragged the 11 year old into the lake before he had a chance to let go of the leash. The Street is 10 (~53 in dog years). Dad not mom is his trainer but dad was hundreds of miles away.
I was in the house with the back door open and just finishing dinner preparation for my sweetie. So The Street and Cocky are fetching and swimming and the humans are cheering festively. All of a sudden the volume and tone turned loud and agitated. Apparently The Street noticed a goose in the middle of the lake. With determination characteristic of Mark Spitz, The Street dog paddled across the 3/4 mile lake chasing mother goose toward the golf course. Mom fled home, put her golf cart in gear and zoomed over dam, jumped out and burned a path in the links to catch The Street who obviously was more attentive to mother goose than mother human. 11 yo son stayed behind playing with Cocky and fretting about his mom and The Street. Meanwhile in the kitchen my sweetie awaited his ginormous Sam’s Club lobster dinner. Rightly so because it was ready. Any more heat and we would have had an oven fire. My anxiety level went sky high when I looked out the window and saw 11 year old boy on the shore, wet and by himself. Told Sweetie about the boy. He wanted nothing to do with it. I couldn’t leave the 11 yo by the lake without supervision (I was a drowning prevention expert before my spousal caregiving career). So I threw Sweeties dinner on a plate, ran out the back, got the lowdown, and frantically yelled to the 11 yo to get Cocky out of the water and come to the house. 11 yo yelled at Cocky but Cocky who is skittish just kept swimming back and forth to the shore whimpering. I bolted back in the house and grabbed a 1/2 pound package of Cracker Barrel extra sharp cheddar cheese, breathing heavily and mumbled something to sweetie who frustratingly said, I don’t understand. I didn’t hesitate to explain and dashed to the lake (imagine that). My cockerschnoodle, Chaos, started to howl and squeeze through the 4″ space between the deck balusters because he wanted cheddar cheese. Waving the cheddar cheese and screaming like a shrew finally got Cocky out of the water and coaxed back to the house. Mind you had I listened to 11 yo I should have not even left the kitchen in the first place. Must be all those memories of listening to my sweetie during the past few years that got my adrenalin flowing and disregard 11 yo assurances that he was alright. Mother human returned with The Street, collected 11 yo and Cocky and went home. I finally got to eat dinner around 8 when one of the Bravo Housewives came on TV. Sweetie hates them. Took 2 hours to stop sweating and get Chaos relaxed. As if I needed a reason I topped off the night with a hefty helping of yummy chocolate moose tracks.
Dr. Salomon Hakim explains Normal Pressure Hydrochephalus (NPH)
NPH is such a rarely diagnosed dementia disorder that no large population studies have been done. It is estimated that over 1/3 of American physicians have never even heard of NPH, a disorder that can potentially be reversed or at least diminished and slowed if treated appropriately.
The disease was discovered 50 years ago (1964) by a brilliant and caring researcher, Salomon Hakim, MD, PhD., in Colombia, SA. Unlike other brain diseases there is a dearth of studies that follow NPH patients, treated or untreated. NPHers exhibit three often misdiagnosed symptoms that continue to diminish quality of life (cognitive impairment, incontinence, balance and gait problems). Brain scans show dilated ventricles filled with excessive cerebrospinal fluid (CSF). My feeling is that if you are fortunate NOT to be misdiagnosed then you are one NPHer who has the ability to direct and decide what your immediate and long term future may be.
My sweetie could have been CT scanned diagnosed in 2005 or at least told to get scans on some regular basis, to look out for symptoms, etc. but it took a year of intermittent urine incontinence wrongly attributed to BPH, some bowel incontinence attributed to constipation and then after several falls the traumatic brain injury in 2012 that scans done showed the same enlarged ventricles as 2005 scan. Cognitive stuff also was happening to the point of making me think I no longer want to be in this marriage but I stayed, he fell, rehabbed for months, told he would never work or walk but beat the odds and does have a good quality of life but will never drive his miata, will now watch someone else use his chainsaw to clean up the 8 trees the beavers destroyed last year and probably not walk his beloved dog Chaos again. He was only 67.
Even with the defective shunt, endoscopic third ventriculostomy (ETV) and a subacute subdural hematoma that shifted the midline of his brain 14 mm exactly four weeks after ETV surgery, I would not hesitate to make the same medical decisions as I have. It’s my project to keep him with me for as long as possible. There are no guarantees that shunt will work or that surgical complications won’t happen but not doing it will make your caregiver want to take you to the woodshed eventually and likely reduce caregivers life expectancy since that’s what NPH, Alzheimers and other dementias do to those who have to change adult diapers, clean the bedding too frequently, not be able to leave untreated NPHer alone for a minute, etc.
You will find out that there is really no formula for the doc to follow when first setting your shunt in op room, or to turn shunt up or down if symptoms recur. Doesn’t give us the warm and fuzzies buts that’s where this disease is. So my advice while you have the time, brain power and great fortune to have been diagnosed is:
Find a neurosurgeon that YOU and family can work with. We had no choice because of emergency situation. Ours was a skilled surgeon but Fuggedabout his bedside manner and awareness of his patients predicament. Don’t stop until you find one who treats you like his/her own self;
Before surgery find out how often your neurosurgeon wants to follow you. Ours said come back in a year and our university so called top notch NS had patients return as often as every 2 weeks for office evaluation. Somewhere in between is the appropriate frequency but it’s baffling that one says 14 days while other says 365!!!!
Don’t leave hospital without prescription for physical therapy. Even if you graduate the day you start it’s better to be evaluated once discharged than by the hospital physical therapists who’s primary goal is to get you to a level that meets discharge criteria. For my sweetie after serious complication he was discharged after walking 20 steps back and forth in the hallway!! The outpatient PT was good for his physical as well as cognitive well being and not to forget his morale since his PTs were all pretty young women gushing over every teeny improvement and even misstep. So spend time identifying a good PT facility that knows neuro rehabilitation because it’s not the same as broken toe PT.
Any upset of your body’s status quo can aggravate mild symptoms and even make long gone symptoms come back for a visit. UTIs are particularly troublesome because one can have them and not know it. That’s why the dementia folks call them silent UTIs. So keep fresh UTI test strips at home and tell family members that if they observe any “odd” behaviors then check for UTI, if positive or negative at home and still behaving off after a day get into your PCP for evaluation.
Educate your PCP if you don’t have one of the very few who even knows what NPH stands for. Ours admitted he had no idea so we talked and stuck with him because he always responds to my calls and fits us in that or the next day. On one occasion he actually asked what should he do and I said call the neurosurgeon. He stayed late to make sure he got the call back and arranged for a lumbar puncture within 2 hours at local radiology facility. He even came over to make sure we got set up okay. Turned out neurosurgeon should have said get a scan which I had thought would have been requested. Instead I ceded to neurosurgeon and 2 days later I rushed my sweetie to the ER for an emergency brain surgery!!
Get your docs to talk about you before and after surgery. I can’t tell you how horrible it feels when neurosurgeon says that’s for the other doc or good luck with that issue. No I just deal with your brain. But if you are anything like us your brain is connected to your toe nail eventually.
NOT TO TREAT – WHAT WILL HAPPEN?
Most of the NPH research studies that have been done are on extremely small numbers of patients so results are typically not statistically significant and the focus is on shunt efficacy and complications. The progression of a shunted as well as non-shunted NPHer is simply undocumented in the medical literature. Caregivers report that the whatever symptoms show up just get worse and worse. If you find information on the progression of untreated NPH please send it over.
The Hydrocephalus Association has greatly expanded its links to research and other articles about NPH since my journey between 2012-2016. The links on this page were the ones that helped me the most. I am no longer a caregiver but occasionally update this page. Since updates are not frequent the Hydrocephalus Association is a good resource for current NPH information.
“A recently published study from researchers at the University of Gothenburg attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement. The study was led by Daniel Jaraj, MD, PhD, a member of the HA Network for Discovery Science.
The research group obtained baseline information on the elderly population of Gothenburg, Sweden from 1986-2000. The study included 1,235 participants, all aged 75 or older. No patients with treated iNPH were included. Participants were divided into four groups based on radiological and clinical indications:
Non-iNPH: consisting of participants who had no sign of ventricular enlargement upon computed tomography (CT) scan and did not exhibit any of the core clinical symptoms (cognitive impairment, gait disturbance, and urinary incontinence).
Asymptomatic Hydrocephalic Ventricular enlargement (HVe): consisting of participants who showed ventricular enlargement but did not exhibit the core clinical symptoms.
Possible iNPH: consisting of participants who showed ventricular enlargement and exhibited at least one of the three core clinical symptoms. Probable iNPH: consisting of participants who showed ventricular enlargement and exhibited gait disturbance as well as either cognitive impairment or urinary incontinence.
Five-year mortality rates were similar in non-iNPH patients, asymptomatic HVe patients, and possible iNPH patients. However, probable iNPH patients had a significantly higher five-year mortality rate of 87.5% (Table 1).
Dementia developed in 20.6% of non-iNPH patients while 68% of patients who showed radiological indicators of iNPH (symptomatic HVe, possible iNPH, and probable iNPH) either had dementia at baseline or developed dementia during the study period.
Furthermore, almost all participants with enlarged ventricles showed some sign of symptom progression, and nearly 50% of asymptomatic HVe and possible iNPH patients developed probable iNPH during the time of the study period.
Thisstudy was unable to directlycompare outcomes of untreated iNPH with treated iNPH. However, the authors hypothesize that radiological indicators (e.g. enlarged ventricles) develop before clinical symptoms (Figure 1). Surgical or other interventions at this early time-point may lead to better outcomes for iNPH patients.”
There are no established standardized protocols for diagnosing, treating and following suspected and/or confirmed NPH patients. If one is fortunate to have a physician who knows about NPH and who pursues or rules out a diagnosis, treats and monitors, most likely that physician is approaching it differently from any other physician. Every patient seems to follow a very different path. Recently, Relkin and others, assembled guidelines for NPH diagnosis and treatment. Unfortunately they are not recognized by any national or internationl medical authority but they are a very useful tool for patients, caregivers and advocates to use to ensure that the best and most thorough approach is followed. I implore all NPHers to give copies of these documents to all their providers so the word can get out that NPH can be assessed methodically.
My sweetie has had 2 unplanned brain surgeries, 1 planned, right lung removed and a few semi knockout tests all in the past two years. I learned pretty quickly that the hospital is the worst place for him for many reasons. One is the bathroom issues. The hospitals don’t allow diapers because of rash and infection concerns. Well the incontinent patients still bask in their own business because they don’t know how to press call button or if they do this loud incomprehensible voice screams from the heavens WHAT DO U NEED? I need my mommy!! You get the picture. I have stayed in the room when allowed 24/7. And when icu wouldn’t let me stay he called me every hour demanding to know where , why, when, how come, it’s my fault he’s there … He also may need valve and aneurysm repair if it continues to grow. In his higher functioning moments I discuss whether he wants to contine the scans of heart and brain because the only solution is more surgery. He is very wishy washy. I mean do I want to know if brain hole or aneurysm are worsening if surgery is not what he wants. Selfishly I say no but am I sentencing him to an untimely death? Who do we discuss this with? Yes he has the paperwork expressing his wishes but that was when he was healthy. When the feeding tube or ventilator are needed and you don’t really know if it’s temporary or if LO will return it is so tormenting.
This is how hubs urinary freq/urgency/incontinence have been managed. Urologist missed opportunity to dx NPH because he just focused on size of prostate brushing me off on the incontinence. Turns out incontinence is not a common symptom in BPH but it is one of the first signs of NPH. Just before 2012 fall that lead to NPH diagnosis hubs was scheduled for a TURP to hopefully reduce frequency and urgency. He was going almost hourly at night. ICU for TBI cancelled prostate surgery. In my spare time I read about it and discovered that urinary incontinence is a common side effect of surgery!!!! I couldn’t believe urologist didn’t tell us this before hand. So please find out all the possible side effects so you can make an informed decision. To manage the frequency hubs takes flomax and avodart. Some night he gets up 2 some nights 4/6. It’s a “crap” shoot and we continue to deal with wet disposables and bedding changes. Our quack neurologist prescribed 300 mg gabapentin when we told him. This was perhaps the least whacky thing because it actually seemed to help at night. But like I said there’s no predicting but I haven’t had to do an extra bedding change for 4 weeks. You know what I’ll be doing tomorrow AM!
On anesthesia. Very very important to rant and rave with actual anesthesiologist that LO has dementia. Hubs is an awful drunk and it has been noted on surgical report that he showed delirium and took a long time to be sufficiently coherent to leave and go to icu room. So if LO has had surgery before try to get the anesthesia report to show anesthesiologist what was given and how responded. After the 2nd brain surgery he was the most alert than previous times so I got the 15 page concoction report and handed it the anesthesiologist nurse and doc and said he has dementia even if he is discussing Einstein’s theory of relativity so watch those brain waves or whatever they do that is so expensive and adjust accordingly and don’t put him on suicide watch in recovery if it’s his dementia. Personally I have found the anesthesiologists the most attentive once they understand.
So that’s my dissertation. I don’t know how I will handle the next crisis surgery but hubs has come back from the brink after I was told that he will never walk or work again. He is doing both. Sure not anywhere near his former level but he’s out in the garden picking up sticks, making beautiful piles that beavers envy and trash guys love and I take him to work. So right this moment my project is to do whatever it takes to keep him around but that can change before I blink my eye. Thanks for reading and letting me get this off my chest.
Find out if there is a way to do any surgery by minimally invasive procedures. The lung surgeon in our capital city was going to do the full blown open chest, break ribs, etc. Someone pleaded for us to contact teaching hospital so I called Duke thoracic surgery department, got a call back the same day, faxed the records and had an appointment in four days. This surgeon does robotic surgery which is less invasive than the minimally invasive surgery that is typically done for lung removal which is called video assisted thoracotomy or VATS. I’m proud to say my hubs had RATS (robotic assisted thoracotomy). I researched RATS and while no compelling data to say RATS is better than VATS in terms of patient recovery, etc. they are both a billion times less traumatic than the butchery (BATS) that was going to be done in our town. He was in ICU for one night, moved to a room and as soon as he could walk around the unit discharged. We went in on 12/27 and out on 1/1. His long term recovery has been phenomenal. On pain meds for a few days and now we have a boatload of vicodon. Just waiting for a drug raid!!
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; drop 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.