The Last Year With Helga

The Last Year With Helga,
before 4.27.12 when she died.
(6th or 7th in the Series)

See term Helga.

She was doing great starting off at walking outside where we had installed a pipe guard rail along the neighbor’s fence. Her walking went up to a peak of 14 80 foot walks, 9 in morning and 5 at night. She and I were so proud of her work. Gradually as the year proceeded along with repeated UTIs it got harder and harder for her to walk. On cold days she walked in the house using a cane and made 4 or so distances of about 30 feet at best. Walking with a cane was much harder inside then outside as the railing gave more substantial support. I had read that post stroke people lived 5 years at most after such a massive stroke. I never told her that fact, but she was no dummy. I had an unspoken objective to at least get to that mark. We made it half way, and along the way learned a few things which might be of interest and even generalizable.

42 YEARS – that ain’t bad!

First a pep talk to myself. We had 42 years few people can match because like old fashion farm people we worked together all the time; we were hardly ever separated. To me it was most interesting to feel like a third person, for I knew I was a person and she was a person, but together we were something else. People call it a couple, but such an appellation could not cover the whole thing we were. Maybe I exaggerate, but I always knew what she was thinking and she me. It could be seen when we lectured. There is a bit of that behavior on the video on the website. It is the only a small incomplete record of what we did together in combination teaching, and it’s a mere speck of what it was like when we were in full form. Its better than nothing.

A story comes up. We had finished a blazing talk, I was still high and some cute little thing trailed along with us into an elevator at some posh hostel. Maybe she was amazed to see a man and a women cooperating so well together. It may not have been the information we presented, but we liked to think it was. Earlier I found on the floor one of those battle ribbons they give soldiers to mark their participation in different battles or theaters of war. So with the two of us and her in the elevator we kept on blasting away, giving her the benefit of our advanced knowledge (like Woody Allen’s hero in Whatever Works). We all three get out of the elevator on the right floor, and finally I slow down, so does Helga and the gal is just flatteringly dazed. So I give her the battle ribbon with a little flair, announcing that anybody who can listen to us for that long must be exceptional. She loved it and went off. We loved it too.
Birth Control Medicine, Is it a Medicine?

Early Birth Control Pills were the largest experiment ever done on women, and it was a failure.

For me hooking up with an older women had and still has certain advantages, particularly if she already has a child. Guys don’t want children just a single woman, so strategically the odds improve in searching. And single women want children. With an older women, one can hope to take what energy would go into a new child, and put it into one already made. Besides there is no way one can ever push their way between a mother and a child she loves. I knew we had too many people on the planet 40 years ago, and the opportunity came up to sterilize myself and I arranged it. One reason was that Helga could stop taking birth control pills. This was a rather serendipitous decision as the birth control pills that were first distributed were made of as estrogen analogues. These were slightly modified from the natural hormone in order to patent the molecule. As it turned out this modified molecule was not identical with the hormone women (and men) have in their bodies. The book, Sex, Lies and Menopause, tells the story of the mass disturbance this made to the millions of women who used these products for many decades. Birth control was one of, if not the most important discoveries of the 20th century, maybe for all time. People make such a fuss over a new child and I shudder. What will the future look like with 8, 9 or 10 billion people. Certainly it will be full of wars or disease if the laws of nature are not changed, which cannot be expected.

All the more was our disappointment that a good relationship could not be worked out with her son. Now it’s too late. We became estranged from David after he lived with us for 22 years. This occurred mostly as a defense tactic as I could see that she would be depressed for weeks after a visit. I had to fathom some personal courage to push him out. Of course I knew about the primate – maybe even – vertebrate tendency for the new male to kill the former progeny to protect his own which could be expected soon after mating started. It’s part of nature which is rather glossed over when one considers what beauty Nature has created. It ain’t all beautiful, and one must exercise the mind to find what beauty one can.

Finding Beauty in Nature

My mother was onto this idea but it got twisted by her religion. Here is the interaction. I had sent her one of my original paintings made in one of our special desert places. I don’t give away my paintings casually and if I displayed pictures at a gallery I always make the price too high for anybody except a smitten person, who has not, by the way, yet shown up. I may never sell anything and that’s ok, but I wander. I am lucky in not having to sell paintings. That was one of the gifts I received when Helga choose me, or should I say when we found each other.

My mother really did not know much about deserts coming from the devastated urban New Jersey where I grew up. Her parents escaped the mess in Poland so lovedAmerica. I call her and ask if she got the painting? She says isn’t God great. Wow, where did that come from? It was certainly not what I expected. I realized it then it was part of her constant campaign to foist her religion on me. Of course it was her attempt to help me out. She saw the beauty but ran it through her perceptual filter (altered to see god everywhere). She was so religious I could best call her a super catholic (but not to her face). This was because she would go to church on other days then Sundays. That was something even when I was trying to be a catholic, I could never get excited about enough to waste the precious time during the week. She said nothing about the scene I painted, nor anything about the desert. I was always tired of getting cards from her saying such irritating things like God Bless You. I changed the subject as I do always, mostly, if in contact with my brother and sisters as they are all religious and vote Republican. How that happened is another story – which my father would find horrible, being a confirmed Democrat.

Creating Miracles

I mention this painting/mother story as part of my narrative because it was Helga who put to rest any residue of magical thinking I was want to entertain myself with, at times. It must be a natural thing to seek explanations for things that are unexplainable given our current mental tools. Now I can understand how such an idea of a miracle is created from the vast combination of events which surround a person. The combinations of natural causes are just too many for rational thought. It ain’t a miracle just a highly unlikely event and they can occur regularly if one pays attention. Helga called it “Magical Thinking”. Magic is a shorthand for unexplained events, but they may be explainable with some study, practice, experience and knowledge. If you need more substantiation for this view check out the Skeptic Society on the web and their publications. A really good professional magician can throw single playing cards long distances accurately without you seeing it. They practice this art. Magical thinking can be carried out to explain all sorts of natural phenomena and can even morph into conspiratorial thinking.

If one gives up magical thinking, things may seem dull for awhile but it makes for another worldview, which brings other rewards and challenges.

UTIs a Female Scourge

Over the last year she suffered from as many as 6 UTIs (urinary tract infections), each of which lasted 3 or more weeks. It got worse and worse because she confined herself to the wheelchair. We had a hospital bed after first coming home, but she was busy all night long lowering and raising the bed so neither of us got any sleep for weeks. She could not breathe when lying down. A little way up made breathing easier but to sleep we had learned to lie flat. The fat pad that had developed around her upper abdomen was so heavy it would ride up to impact the lungs and the feeling of drowning would increase the flight or fight response which made things worse. The release of adrenal hormones in response to this stress would raise blood pressures, which was the primary problem. Confined to a wheel chair seemed to exacerbate the frequency of UTI’s.
This is what I was able to understand about UTIs. Each women has their vaginal opening at different distances from the anus, the source of all the infections. Of course, with strenuous intromissions by a male during intercourse, bacteria can be forced into the vagina and into the urinary tract, which is relatively short in women compared to men. That’s the most common source. Wheelchairs also push bacteria downward toward the vagina. When she had a bowel movement and could not get clean enough the bacteria to infect remained and constituted the source for the infection. Sitting in the chair changes all the angles and lack of walking further diminishes bowel movement. I gradually became aware of all this – understandably because I don’t have a vagina. I wiped her as clean as I could without damaging anal tissue. But with diarrhea and bowel problems it was difficult to manage this factor. Besides it took some time to learn what could be the cause.

Each UTI lead to severe pain, which needed treatment, and the antibiotics used to reach the infected urinary tract destroyed the beneficial gut bacteria, leading to further UTIs from bowel disturbance, leakage, etc. A positive feedback system developed which could lead to complete breakdown if allowed to continue. Once I figured that out I was much more attentative to cleanliness and bowel condiitons. We had used wet wipes ever since the first nurses acquainted me with the consequences of just using wash cloths. Wash cloths are very rough and can damage the skin with repeated frequent washing. Damaged skin leads to blood infection which could be deadly.

Learning to be a Nurse

Wet wipes were not provided by the rehab hospital in AZ where we spent 4 weeks so I used to regularly stock them over the 2 plus years. We never saw deep broken skin until the last days when a large bed sore developed. When I saw slightly damaged skin our friend Robin Marzi, a nutritionist/hormone physiologist nurse, told me a story about how a local genius pharmacist (owner of Montecito Pharmacy) she works with developed this vitamin D3 based cream. He used the cream on a bed sore for his mother who was in hospice care and his next visit he sees his mom walking down the hall to meet him. The cream rescued his mother from hospice care. Vitamin D3 is now regarded as a hormone, not just a vitamin. D3 is involved in over 200 biochemical pathways, but is critical for the immune system. The skin makes this hormone from sunlight and precursor molecules. It cannot absorb an excessive amount through the skin. Helga shunned the sunlight probably due to her blood pressure drugs. Most people don’t get enough sunlight and with sun blocking agents the situation is made worse. As a rule of thumb, each of us needs about 20 minutes per day of full body exposure to sufficient sunlight.

Vitamin D3 Helps

When Helga developed slightly damaged skin I would put the cream on. This was a 50,000 unit dose of D3 and some other magical ingredients. Within hours the skin was good as new. It was a miracle, so to speak. A miracle that shows up in clinical practice should be thoroughly examined. The examination may yield knowledge of the mechanism behind the miracle, then one has discovered a great healing tool. While she was fighting for life we always had high dose vitamin D3 cream on every day. This was new ground for me and probably for most people. It eliminated any viral infections which she was susceptible to during the entire 2.5 years post stroke. I take that as a useful clinical observation for still further examination with other people, etc.

The Last Scene

If you have read this far you deserve a battle ribbon. But remain awhile longer for the last scene, when if you persevere, I will look around for another bigger battle ribbon. Any theater would be dull without a final scene, but as Woody Allen would say I don’t want to be there when it happens. But here was Helga as her best. Gradually she became aware that her life was not worth living. She lost use of her right arm gradually, even though she had worked it up enough so she could feed herself with a spoon from a bowl. Her speech got shorter, fewer words were used but I knew what she needed since I could read her so well. I was getting subtle messages that something had changed. Going to sleep I would analyze the day’s activities and observations trying to make sense of what was happening. She must have been having small strokes like her dad who died from brain strokes (and similar excessive blood pressure). She stopped eating except for ice cream sandwiches which had been forbidden (by me) to save her and me from diabetes. She got into a habit of just dropping back in the wheelchair after standing to transfer to the potty. This hurt her weakened arm, and her spine was being crunched from wheelchair posture with little muscle support. Pain meds were not effective.

The ice cream was greatly appreciated as were the last long trips by power wheel chair one of our care givers made an effort to make during the last 2 weeks. My thought was even those crazies on death row get their choice of foods before being killed by the state. That, is except for the 200 or so freed because of mistakes in our justice system. These people will not be killed fortunately, just maimed by their time on death row. I must turn around a sad song like in Hey Jude. Awareness of injustice is the only sane response to that tragedy. What a world. It is time to leave, but this decision came into my head on Sunday but nothing was open. Don’t die on the weekend the medical system has only the ER open that late. 5 or more visits to the ER proved to us that the ER can only be to save someone near death, but she gave up on the ER, afterall what could be done at this stage. Plus we had talked about this possibility and the agreement we came up with was one would protect the other from excessive pain. And now excessive pain was happening.

Hospice is a Great Compromise Now When Euthanasia is Forbidden
As described previously the entry into the hospice program came about from a “miracle” visit by a friend we had not seen in over 3 years since she lived in Seattle. Her experiences with ALS patients were considerable and she explained the benefits of hospice. On a Monday I called and a nurse came within an hour, explained the program, set up other nurses and had delivered a bag of drugs, the key one being morphine. We started the morphine and relief came over her face. Then as we learned the best dose I continued a rather large dose of morphine every hour until Friday morning. She was gone from the first few doses. During that early time on Monday she turned to me and said: bye bye.

She was so cute in these last moments and was not “the cobra in the gunny sack” my old professor called her. That occurred when, as a MS graduation present for her he set up a debate between Helga and some pro-pesticide mafia which was what he called the pesticide industry people, which included publically support prostituted professors. He seemed to love the controversy and, seeing her eviscerate the pro-pesticide professors was his pleasure. Helga could be very sharp with idiots and stupid statements. He described how everyone was opening the doors for the little woman, and he knew he had a cobra in a gunny sack. That’s the best compliment she had in the 30 plus years we worked together as IPM/BC specialists. See the website for some of our papers.

Hormones at Work

The hospice experience all left me saddened, happy to see her out of misery with the memory of the bye -bye still resonating as I expect it to while I live. I don’t think one gets over grief, one just learns to manage it, at best. It creates a leveling feeling so that you can sympathize with almost anybody. I can see why people resort to mind altering and memory erasing drugs. I am told this grief is all natural, a vast unexplained swelling of mixed emotions topped off with reflexive tears. Breathing gets altered. It’s like the flight or fight response so must originate in the brain with swashes of hormones. There’s a recover period when the hormones are cleared from the blood stream. This leaves you short of energy.

The brownies I use help me to write and witness this process, sort of as part observer, part feeler, part conceptualizer. No wonder big Pharma does not want a drug you can grow freely without cost. Plus it’s a euphoric, and our culture hates pleasure. I must train the smart brain to manage the automatic reflexive part evolutionarily derived from our chains of precursor vertebrates. The cerebrum or fore brain is ultimately the controller but cannot stop the other brain section which is faster, with unexpected triggers. That part, (amydalla?) is a more primitive brain part and is particularly useful today because it has been tested for millions and millions of years. The forebrain is new. That’s what’s doing the writing. I told the remainder of the story about Helga last written report in this series. Morphine is a great drug, no wonder there are so many addicts. Pain free living must be great after pain living.

Recovery Time for Me

To be entirely alone during a rebuild your life period is hard, just because one is so tired. But aloneness slows things down and makes time for healing. That’s my state. Urinations for Helga during the night were mas o menos every 1.5 hrs, so I could sleep a bit, jump out of bed, lift and turn, clean a little, usually nothing, and hope some nights for 3 hrs without a break in my sleep. I did the night shift after I realized no one could do it better. Night is a fearful time, subject to accidents, vomiting, diarrhea, etc. She wanted a light on during the night, just like I did for fear as a young boy. During the day if the care workers started at 7 am I could sleep until 10am without fear something bad would happen. I set up this system over the first year by going thru a series of workers. Jean Yant came in first as the best we had and remained to the end, supporting us with good cheer, running the insurance company communications, and household work, cooking as everyone perceives someone else’s food best out of boredom with their own methods. Jean would make the best bacon as it takes attention not to burn it as I do periodically. She can focus better than I and certainly has more experience. I like the computer and am busy thinking up things, making notes, paying the bills (which should be much lower without Helga), etc.

At night I learned to pee at the same time as Helga, but now the pees are delayed longer and longer as I gain strength. I am still too fat which my doctor explains is due to stress over the last years. How am I people ask? in sympathy? I say I am fine, which is true. I no longer have to care for H, itself a mixture of sad/happy as described above. It’s an indescribable state even with the abstract presented above. Time, writing, walks, good food, supplements, and meditation is my wellness program. Distractions help and I have tried my fast and true method of DVDs: “take twenty DVDs and come back in a week” is the best prescription I like to hear.

Time is the healer and I use as many distractions and new experiences as possible. My friends encourage this sort of writing for which I am grateful. I am talking myself to health by writing. My hero Woody Allen in his movie Deconstructing Harry, says his writing saved his life. Of course it’s a funny story as he likes to make it and that is his genius. Judy Davis is angry at his character, Harry Block, who is suffering from writing block, something I have not yet experienced as you can see. He describes fleeing from her with her gun, but he tells her a story he had written that makes her laugh and thus he saved his life with his writing. That’s me talking to myself. If you are listening still, it’s not just to myself. Good Luck and Good Night.

A Poem: Work and Play

Sleep doesn’t come ….
The cat hours arrive.
Too tired to work,
Or just a clear period to think?

No time for thought:
When task follows task.
Work, write, pay, wait,
Talk, plan, listen, lift,
Carry, fix, buy, sell —
It all takes thought,
But work thought,
Not play thought.

Play explores without objective,
Without the thought of product,
With exuberance, joy, harmless carelessness,
With harm to others a boundary,
Activity being the only reward.

Work’s awards give time to play
Until the day when work is play.
Play, the prelude to work.
Work, the organized objective play for pay,
Play is pay at life’s expense.