The Doctor Cut Off His Legs

October 17, 2018

Late one afternoon Terry asked, "Is he going to sue the doctor?"

I replied, asking, "He who?"

"Clint."  (Clint is our oldest son.)

I asked Terry, "What doctor?"

"The doctor who cut off his legs!"

"Sweetie," I said, "Nobody cut off Clint's legs."

"Yes, they did!"

"No, dear.  Clint is fine.  He has his legs."

"You're wrong!  The doctor cut off his legs and replaced them with marble!"

The disagreement continued for a minute.  I wasn't making headway.  I called our son and asked him to stop by on his way home from work.  Clint arrived at our house, surprised to learn of the amputation of his legs.  He pulled up his pant legs and showed Terry his two dead-fish-white shins, so Terry could be certain Clint still had legs.

Terry smiled and shrugged...another delusion blown out of the water.  He didn't have a leg to stand on.  (pun)

New Marijuana User's Experiences

New Marijuana User's Experiences

None of our family ever used marijuana, ever.  We never felt the need.  Our mind set was that if other people wanted to use it, fine, as long as it didn't affect us directly.  When the rare disease my husband and son share advanced, the need to alleviate symptoms pushed us to try the previously illegal drug.

Our care giver, Manny, took my husband and son to a clinic for a medical marijuana evaluation.  Although they carried documents to confirm their diagnosis, the doctor simply asked if they needed cannabis and signed off, giving them the required certificates.  Based on this experience, in my opinion, doctor evaluations for pot are a farce, providing a rubber stamp and charging money.  They weren't even given a receipt.

The next day, Manny took my guys to get their medicinal pot supplies from a reputable and licensed shop.  When they went to enter the establishment, Manny was told he couldn't enter without a certificate of his own.  He explained that while both guys were in wheelchairs, my husband couldn't control his chair very well.  If they wanted the inside of their shop to remain intact, they may want to reconsider.  They did.

Because their condition causes breathing problems, due to diaphragm weakness, smoking wasn't an option.  Their neurologist concurred, saying he couldn't prescribe the drug products, but wouldn't object.  My guys chose some edibles.  My husband got THC infused chocolate bon bons.  My son got CBD Gold capsules.  A salve to rub on sore spots and a spray (two squirts per day in the mouth) rounded out their purchases.  The shop gave each of them a small bag of gummies, a pipe, a lighter, and a sample Gold capsule of THC.

The first time my husband tried the THC laced edibles, he quickly reported his legs felt hot.  The sensation lasted about half an hour.  The next day he tried the same edible with the same result, although the sensation didn't last quite as long.  On the third day, he no longer had the hot sensation.  His body or mind seemed to have adjusted to the foreign compound.

My husband has Machado Joseph's, a rare neurological disorder, and a second, not yet determined, neurological disorder.  The first affects his balance, coordination, vision, and peripheral sensitivity.  The second makes him crazy as a bed bug, with dementia, especially at night.

The marijuana had some effect on his already delusional and hallucinogenic mind.  The THC seemed to make the imaginary thoughts come easier, but make them "kinder."  Previously, he would often "see" people, who he often viewed as threatening in one manner or another.  Or, he would "see" both small or large equipment and vehicles that needed some sort of work to be done to them or by them.  With the THC, he sees things in a more Disney type view, like blue birds having taken up residence in his coat.  He re-enacted the entire pre-flight check procedure for flying a fighter jet, including climbing up the ladder, putting on his helmet, and adjusting his oxygen mask.

A few months later, the top doctor in rapidly progressive dementia, along with Terry's neurologist, diagnosed Lewy Body as the source of Terry's behavioral and cognitive problems.  Lewy Body is a bit like Alzheimer's on steroids.  Key symptoms are delusions and hallucinations, especially seeing little animals and insects, acting out dreams, and mood changes in a heart beat.  His cannabis was changed from THC to CBD to avoid contributing to the hallucinations and delusions.

Update 3/8/2017  A good side-effect of medical marijuana is the minimizing or elimination of the constant feeling of cold feet, even when the feet are toasty warm.

Finding Respite Caregivers for Full-time Caregivers 101

Rule #1:  Before you interview or hire, list the duties of the caregiver in detail, including when and how they are to be done.   A notebook of procedures, medicines, cautions, and responses, beginning with feeding is a good idea.  When and for how many hours will you need help?  What benefits will you offer?  Make the house rules very clear, especially regarding smoking, pets, children, eating, and phone usage.  If you have a "deal breaker," let them know in advance.

Rule #2:  Look for a caregiver with true compassion and an inordinate amount of patience.  Going through someone who already has a wonderful caregiver may result in better references than going through an agency. Some of our biggest failures were "professionals."

I strongly recommend nanny cams.  We tried out a number of applicants, before finding people who were truly caring.  A few of the people who didn't make the cut had drug, personality, or mental issues, which lead them into thievery.  The ones we kept have been wonderful, which the cameras confirmed.

Rule #3:  Finding a caregiver can be daunting, especially when the patient has a rare disease or unusual condition. Of course, it doesn't help to jokingly tell the caregiver that if the patient dies, it's their fault!  Don't terrify the respite caregiver!  Allow adequate time to instruct the respite caregiver in the major issues, expectations, crises, procedures, responses, and treatments that might arise.

Bombarding caregivers with all the things that might kill your loved one might boggle their brains. I've actually had people who were either experienced with my guys, experienced care givers, or nurses, tell me they were afraid to stay with them, out of fear that one or the other might have a crisis or die.  They are very fragile at times.

Perhaps my favorite caregiver memory happened while my husband was in the hospital following spinal fusion surgery. Although I had tried to warn the staff about his idiosyncrasies and his disease, they weren't prepared for what they got. As I entered his room, an experienced older nurse stood at his bedside with a look of utter frustration, confusion, and dismay on her face. As she watched my husband, she lifted her hands, palms up in surrender, exclaiming, "I don't know what to do!"  My husband was flopping around in his bed, naked as a jaybird.

Another nurse quickly joined us. Both explained that he refused to keep any clothes on, not even a gown or sheet.  His room was directly in front of the nurses station. He was placed there, so that every time a nurse passed, they could look in on him, to make sure he was okay. Trying to keep him covered to any degree of modesty or privacy challenged them.  With my husband, there was no gown or clothing on which to clip any of the monitors. The older nurse looked at me and asked, "What do I do?"  All I could do was laugh.

Rule #4:  You will, most likely, be paying out of pocket, unless you were astute enough to take out long term care insurance.  Medicare does NOT pay for long term care.  Medicaid will pay for someone, if you are poor enough.  Caregivers who live-in and are paid through Medicaid do not pay income tax on their income.  Consider having a live-in caregiver.

Where's My Cake?

For laundry, I use banana boxes.  A full banana box is a full laundry load.  The boxes are easy to carry, because they have holes for handles on the ends.

Recently I filled a box with freshly laundered towels, yet to be folded.  I placed the box on the dining table, as I attended to something for my son.  Suddenly my son said, "Mom!  Dad!"

I turned to look at my dementia addle-brained husband.  He had grasped some of the towels in his hands and was bringing them towards his face.  I thought he was going to wipe his face.  Quickly I stepped back to the table, took the towels from his hands, and whisked them away.

"No, dear.  These aren't napkins.  I'll get  you a napkin."

He looked at me with an odd expression and said, "Why are you taking my cake?"

Years prior, layed cakes with cooked White Mountain Frosting were his favorite. Part of his brain still held those memories.  But, the part of his brain that makes sense of his senses and surroundings often misinterprets the input of information... amazing what is produced.

Poor guy.  No cake.

A Cow Crapped on Me

 Monday, February 1, 2016

Recently my wheelchair-bound dementia husband called to me.  "What's wrong," I asked.

He said, "A cow crapped on me!"  (As his vocabulary deteriorates, his favorite word is "crap" or a form thereof.)

I had to ask him several times to repeat himself, because he has speech difficulties and I couldn't believe what I was hearing.

"A cow crapped on me!  Get me out of here and clean it off!"

I couldn't help but smile and laugh.  I said, "Sweetie, you're dreaming."  

It took some convincing, but finally he realized he wasn't in a barnyard or pasture.  He started smiling, although he was still agitated.  We had spent more than our fair share of time living on farms, wading through and shoveling s--t, and getting whacked by cows' tails covered in liquified manure.  

After he calmed down, I asked what happened.  He said was on the ground and a cow was standing over his back, crapping on him.  He said he could feel it, smell it, and see the texture and color.  He was amazed at how real it all was.  

These days he is often confused about what is a dream and what is real.  Even when he is having a hallucination, it's easier on him to tell him that he is dreaming.

Stupid Death

Last night my dementia husband's passion for laxatives caught up with him.  Luckily his pull-ups caught a good deal of the loose pudding textured outpouring.  His pants captured most of the rest.  Unfortunately, as he checked the damage by repeatedly plunging his hands down the back of his pants, he managed to shroud his hands with the stinky brown stuff and then finger painted everything within reach.  Ultimately his electric chair, the toilet, walls, grab bars, standing bar, toilet paper and holder, door, and floor featured generous sloppy smears of excrement.

"Oh, my gosh!  What happened?"

"I had an accident.  It's your fault!"

I was stunned by the extent of the mess and smell.  "It's okay.  Let's get you cleaned up.  Next time, don't do this.  Just let me clean you."

I took him to the shower, trying to minimize the trail of excreta, transferred him to the shower chair, effectively covering a good portion of that with liquidy feces, and began a relatively long process of washing every nook and cranny of his being.  His clothes, his hair, and every part of his body were not spared the ejecta.  Eventually, after several full body scrubbings, while cleaning the shower area in between, he was clean.  But, he needed to wait, while I cleaned his electric chair and enough of the floor to allow exit from the bathroom.  Waiting is not his forte.

After not too terribly long, I stripped his chair and placed folded towels for him to sit on, so he could go back to bed, which I had also stripped and remade with fresh linens.  I transferred him and he went back  to his slumber.  Now, in the middle of the night, I faced not only a small mountain of stinky laundry, but considerable scrubbing of the bathroom.  I set to work.

Using what I had, I began cleaning in earnest.  Because many of the cleansers were nearly depleted  when I began the tasks, I used several different products.  Finally, it was looking fairly clean.  Because I like to walk around barefoot, I wanted the floor to be very clean.  I needed to close the doors (the bathroom has two doors) to make sure every square inch was scrubbed and sterilized.  The floor wasn't dry from the previous cleansers I had used, but I was anxious to finish and go to bed.  I decided to use bleach to be certain the floor was clean.

While on my hands and knees, I poured the bleach onto the floor.  A cloud of gas quickly arose, enveloping my head.  I gasped.  That breath immediately caused me to become severely light headed.  When I was young, the news had prominently featured warnings about cleaning bathroom with the combination of Comet cleanser and Chlorox bleach.  A young mother had used the combination in her toilet, passed out, and drowned.  The second thought was of a person who had died by being squeezed to death by an elephant, like a peanut.  While both instances of deaths were tragic, there was also something funny about dying in an unusual way.   Simultaneously I had the thought that I didn't want to die having done something stupid.    Although I hadn't used Comet cleanser, something reacted with the bleach. I didn't want to be remembered for that.  Unable to get to my feet, I groped for the door handle.  As consciousness was nearly gone and my vision faded towards black, I was able to get the door open for some untainted air.

The next morning, still shaken from the close call, I had to laugh.  My main concern had been, and still was, that I didn't want to be remembered for a stupid death.

Are Organic Foods Worth the Cost and Safe?

A 2012 Scientific American article explained that organic food is considered organic, because no non-natural pesticides are used. But, pesticides are pesticides, whether naturally produced or not.  When copper sulfate and rotenone (both natural pesticides used in organic farming) are used, both stick around after harvest.  Chronic copper sulfate exposure can lead to anemia and liver disease.  Rotenone, correlated to Parkinson's disease, holds five times the risk of its synthetic counterpart.

A study by the Swedish Environmental Research Institute suggested that pesticides toxins could be nearly entirely removed by an organic diet in two weeks. But, they also reported that "levels that we found in urine during the period of conventionally grown food are well within acceptable levels, which means that it is unlikely that a single substance would pose any risk to humans."

The Environmental Working Group tested over 50,000 samples of fruits and vegetables for levels of pesticides. From their results, they compiled two lists. One, the "Dirty Dozen," high in pesticides. And the other, the "Clean 15", low in pesticides. They believe that eating organic versions of the Dirty Dozen might reduce pesticides levels by up to 92 percent.

Dirty Dozen                                       
Apples
Celery
Strawberries
Peaches
Spinach
Nectarines (imported)
Grapes (imported)
Sweet bell peppers
Potatoes
Blueberries (domestic)
Lettuce
Kale/collard greens

Clean 15
Onions            Kiwi
Sweet corn      Cabbage
Pineapples      Watermelon
Avocado          Sweet potatoes
Asparagus       Grapefruit
Sweet Peas      Mushrooms
Mangoes         Eggplant
Cantaloupe (domestic)

I believe there is a simple explanation for the difference between the two groups.  The items in the first group are usually eaten with the outside skins.  The skin is directly exposed to pesticides, whether applied or in the environment.  The items in the second group have, except for asparagus and mushrooms, have an outside covering, which is usually peeled off prior to eating.