My Brilliant Career (#7): Dementia

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.

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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!!!!

Driving – NOT

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 imagechainsaw 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.

http://myaota.aota.org/driver_search/index.aspx/index.aspx

To view short videos about how medical conditions impact driving skills take a look at this website:

https://www.nhtsa.gov/road-safety/older-drivers

 

 

Posted numerous times on http://www.alzconnected.org and Yahoo NPH Support Forum.

Word Associations

“Answer as quickly as possible the first word that occurs to your mind,” said Dr. Carl Jung.

  1. Lobster
  2. Goose
  3. Wall Streetimage
  4. Cheddar Cheese

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.

Dementia and Going Under the Knife

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.

Posted 6/5/14 on alzconnected.org.

 

 

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.

 

Sudden changes – A Rant: Caregiver triage, Neurologist advice and the Triple D”

Ruling out medical causes for sudden personality or physical changes is usually my first focus.  The fog I’m in and the pumping adrenaline turns me into an emotional Dr. Spock as I try to rule out an incontinent event, dehydration, toothache, fever, clumsy act, UTI, etc.

UTI assessment poses particular diplomatic maneuverings because it generates a Pavlovian scene.  I keep a stash of UTI home test strips at the ready to avoid making him more annoyed by suggesting a trip to the primary care.   As soon as he sees me coming with the strips, he gets defensive, rightly thinking I’m thinking something is wrong with him!!  And of course if some bacteria got into his urinary tract it’s my fault. I’m just venting…

Oh but a neurologist saying not to do things to upset our loved ones with dementia causes steam to burst out of my eyeballs. Sure we are doing everything in our powers to annoy them and get them agitated. It’s okay for the docs to annoy us with their insensitive platitudes.  My pre-dementia agitated sweetie would say things like, “You want me to get mad!” I would respond, “it’s not in my best interest to do that,” “why would I want you flipping out,”  “I feel so happy when you’re mad as a hatter.” Well not all those every time or else he could justify an outburst. I keep returning to my mantra, PHYSICIAN, HEAR THYSELF! No doubt there are some great docs out there and frankly now that I have become immersed in the medical industrial complex there is no way I could ever manage that profession BUT something’s got to give soon. They have to change their paradigm when it comes to treating dementia patients AND their caregivers. We are just as victimized by the disease. Everyone says caregiver  life expectancy is shortened because of our journey. So I’m really sorry for railing against doctor’s guidance and wisdom.  I know how hard it is to find a doctor that’s convenient, has available appointments, has been referred, etc. so firing a provider is most times not practical but there has to be a cure for dementia, not only to stop our loved ones from suffering but to give us some peace.

Just had a thought after picking up Chaos’ poop – seems I am most creative when dealing with poop – anyway how about a program called DOC FOR DEMENTIA DINNER or TRIPLE D. To be board certified they have to eat “x” number of  dinners at their patients homes. Those docs that bring meals get extra points toward their next recertification.  Whattdya think?