Wisdom from Edgar Allen Poe

The longer I live, the bleaker the future looks to me in terms of the quality of life.

I cavalierly stated a few decades ago, that the older we get the less we will be able to trust all the services we take for granted.

  • Mass transit
  • Healthcare
  • Food quality
  • Water quality

Over those years, this prediction became a horrible reality and then some.

We cannot trust our banking systems now, or the stock market. There are no real consumer protections like there were in the 60s and 70s. Keep track of packaging of groceries; the packaging is smaller but the prices remain the same or rise. That used to be a heinous fraud and consumer protections were in place to prevent it from happening.

Other production protection measures were in place to track the quality of items produced before they went to market rather than after the fact. Recalls were less likely in my youth than that of today.

Now, you also have to worry about what information is shared with you, whether it is a video or news item and who is the source of that information, has that information been doctored in any way to sway your point of view.

The quote above was written in 1850 in a work of fiction called The System of Dr. Tarr and Prof. Fether but is a fair warning for today’s false or misleading information engine.  Just the other day, I watched the journalist Anderson Cooper respond to an allegation that he falsified reporting on the last hurricane which hit the U.S. in the Carolinas.  It was footage of him standing in deep water while his cameraman filmed a few feet away in less than 2 ft of water. This picture went viral on various platforms where he was vilified for making much ado about nothing.

His response was adept in debunking the mislead allegations as to the source (a flood in Texas, several years prior to the current event), the science behind floods and the fact that the cameraman shown in the photo had died just a week or so prior.  He should not have had to do this, but there are people out there who feel the need to cause a rise in the masses for no other reason than to enjoy the show. People who like to watch the world burn.

Inciters so to speak.

I want to remind you that all people are lazy about fact checking what is fed to them on a day to day basis. I have fallen prey to the misinformation on occasion and felt the need to remind you to be vigilant that most of what you hear or see could very well be false and you are behooved to prove it before making any snap judgement. If you choose to be lazy then you become part of the masses (the herd of sheeple who follow the loudest noises) easily manipulated to respond in the manner that the informant wishes.

Check a variety of sources, check the backgrounds of the sources of the information to see what their true motivation is before assuming truth.

And even if you verify all the information is close to true; but the data has to do with a science of any sort, know that science is an every evolving discipline. What may be proven now could be disproved in a matter of months, years or decades.

The longer I live on this earth, the more I know that I do not know much. I am constantly searching for truth. So should you.

Listen carefully to what is said. Read everything with extreme scrutiny. Look for the faulty logic, the contradictions, and the outright lies hidden in the truth.  Know that a well crafted lie is woven within a series of truthful statements.

youngerhandholdingolderhand

The Injustice of Aging

You’re young. So very young. This post will seem like a lot of whinging about what a drag it is getting old.  You’ve witnessed several elderly patrons at your place of work fall; and as the compassionate soul you are, you have helped and identified the problems to management to assure the incident is not likely to happen again.  It is that kind of consideration that gives me faith in humanity.

I don’t believe you were aware of all of the things I witnessed while visiting my mom. As well as the things I am ashamed to falling prey as a caregiver having little to no experience with dementia other than my teenage self re-living the same frustrations I did when my great-grandmother came to live with us while she suffered from Alzheimer’s.

Society is bent on valuing youth; because… “The children are our future”. (Also the right end to a pageant question as proven by iCarly.)

However, these bright eyed gifts are molded by their elders. And they deserve some respect and care as they make their journey into the sunset.  This is merely to forewarn you of what lies ahead as you age.

It’s not just the physical or mental deterioration which you must endure on this journey. And might I just say, some of it was a complete surprise.

For example:

As you age, your digestion changes once again. To the point where you are slower to digest and certain complex foodstuffs you are not able to break down as you could in your youth. (becoming lactose intolerant was a shocker to me)

Your ability to see at night deteriorates as well. I recall my grandmother on my father’s side having me take the wheel after sunset in Laredo ( a town with which I was wholly unfamiliar)  because she could no longer see to drive. She drove a huge boat of a vehicle too.

Your kidneys are not as efficient as they once were. So they slow in the processing of wastes and you swell a lot if you tax them. (Think cankles and puffy feet) It’s actually painful.

Skin issues become a thing. Fungal infections, boils, yeast, suspicious growths, moles, skin tags, wrinkles, wens. Jesus I thought the dermatology visits were over when acne was resolved.

And this doesn’t affect you since you’re a guy… but the many plagues of menopause are shocking. Burning mouth syndrome, hot and cold flashes, mood swings far worse than PMS mood swings, the hemorrhagic instability of the in utero sloughing process. The sudden transformation into a carnival sideshow freak crossed with Frieda Kahlo. My beard if left to grow would be better than yours. I would stake a bet on it.

Your mind is not as sharp to grasp and hold onto items in short term memory. As you age it progresses while mid sentence. You cannot finish a fucking sentence while talking! Imagine the shame and embarrassment of that.  Some of it is funny like the “Where’s my [thing I cannot find but is on me the whole time]?” or the “What did I come in this room for anyway?” scenarios. Others are scary like losing a chunk of time and space while driving a route you’ve driven over and over. Or scary like attempting to place [some object] into [place where it does not belong].  And yet other are scary like not remembering if you had shampooed or rinsed your hair while you are in the shower. Or super scary like standing in that shower and not knowing what to do at all. You are simply frozen in indecision.

Aside from the obvious aging issues of diseases tied with old age, lifestyle based illness, poor reactions to viruses you once could recover with ease in your youth there is more.

There is harassment, discrimination and abuse.

Refer to this handy chart: 2018-08-17_14-56-49

I got to see some of this first hand while staying with my mother.

For the Financial Abuse:

  • The phone calls trying to scam her of money or scam her medicare coverage for services she did not need.
  • Care workers stealing from her instead of doing the work they were hired to do.
  • Neighbors charging her exorbitant amounts for services they had no need to do.
  • Pharmacy delivery people taking blank checks or forcing my mother to sign checks she clearly could not sign for the deliveries. (who knows how much they were taking out of her account)

For the Psychological:

  • Careworkers guilting my mother into allowing for them to not doing their job because she was not as bad off as they were.
  • My own response to frustrations of the symptoms of her disease as if I felt she was purposefully being uncooperative when clearly I did not understand how her functioning degrades as she grows more tired during the day.
  • Neighbors verbally harassing my mother over things she cannot control.

For the neglect:

  • Careworkers not showing up, showing up late, sleeping on shift, not doing the tasks for which they were assigned.
  • My mother not getting the right meds at the right time of day due to the mismanagement of her prescriptions in the pillbox
  • The horrible food choices delivered to her door once per day only 4 days a week. Never in a timely manner.
  • Not discarding spoiled or discarded food which might lead her to consume such by accident.

Luckily for my mother, I never once saw her physically abused. But that is not to say it didn’t happen in the nursing home. I have no proof of it.

There aren’t many protections or safeguards from elder abuse other than vigilant family members and case workers. As you grow older it becomes increasingly important to have a network of younger family and professionals who have your back. Don’t think you can go this alone.

And if you are obliged to become a caregiver to either me or your father, know these things:

  • It is exhausting.
  • It requires selfless giving, unlimited patience, compassion and non-judgement.
  • You become the parent of your parents.
  • There is support for caregivers when it gets to be too much.
  • It is a-okay to say you cannot do it and arrange for in home care or nursing home care.
  • If you choose to get outside help, you must never trust they have your parents’ best interests in their purview. Assume they are all out to take advantage of you or their situation to their benefit. Stay vigilant and always check up on their service.

The Sadness of a Life Wasted

In our youth, we have no perspective of the value of our lives and the time we are given. We often think there is always time for this or that or the other thing we’ve been putting off –whether it is a project, a travel opportunity, or a big decision.

After my trip to sort out my mother’s house for palliative care due to her condition (Dementia with Lewy Bodies – LBD), I found myself thinking back on her life and her choices – feeling wholly saddened by it all.

Back in the day, I used to be angry about it. A witness to her living in a protective cocoon completely dependent on her parents after the divorce. It was simply irritating to me, wondering how a person can give up on life so completely.

She married at a very young age (17). I was under the belief throughout my childhood that she was younger (16) and did not graduate High School. Though, recently I found that she had graduated High School. I had found her diploma and commencement program.

When she married in 1960, I believe she and Dad moved around a lot due to his military service. Ultimately ending up in Munich where my sister and I were born.

Some stories from Aunts and Uncles confirmed there was love between them early in their marriage. My mother indicated their marriage was abusive and she was the victim of the abuse. Although there were rumors that my Dad suspected she was seeing someone else and they fought a lot over fidelity issues. I’ll never know for certain now as Dad is long since passed and Mom’s memories are fading or nearly broken.

Her life post-divorce was under the roof of her parents where she swore off men altogether and berated the very idea of the pursuit of a relationship or self sufficiency. She was entirely jealous of my father and often made us feel very guilty for speaking with him; let alone seeing him.

She held only four jobs in her life and did not learn to drive a car until her mid-thirties. Strangely, Dad did not drive much at all either. However, he lived in the city where driving wasn’t a necessity.

She had a fear of stepping out of her comfort zone, so learning to drive and getting her license was a huge deal.

Her parents were the ones who stepped in to parent when she retreated. Her mother was the one pushing ever so gently to keep her employed– going so far as to enroll into cosmetology school with her to ensure she finished and ultimately gained employment.

How did I get from anger to sadness after all this time? The symptoms of this disease and imagining all that she had the potential to do at age 74 had she not had the disease. That’s what did it.

We were looking through photographs of her time in Munich one evening and she commented how she would like to travel there again but then her voice trailed off to a whisper of  defeat, “I guess I can’t now, because…”

She never finished that sentence. I knew what she meant. Because of this disease, she lost any opportunity to be travel worthy and nothing would be the same in terms of her ability to enjoy the trip –  savoring the scenes, the food, the music. She could barely walk without falling. Eating was more of a challenge now and as a result, she would never finish a meal. She would just give up.

My heart breaks for her now in this stage of the disease; for all her ancestors who escaped this could travel at her age and enjoy the sunset of their lives with new memories and adventures. For my mother, every minute is like a grain of sand slipping to the bottom of an hourglass of loss.

I remember in my youth admiring the mothers of my friends. They worked, they went out and socialized, they were not paralyzed by their past failures. By comparison, my mother’s stubbornness to “get out there” and “live life to her fullest potential” was embarrassing and frustrating. When she did get out there, somehow it would end in a drama that resulted in a burnt bridge and her resolution to never try again.

Does that last bit sound familiar?

It should.

Did you know she painted? She drew? She was quite good at it and yet never pursued it seriously. Now, she cannot hold a pen to write her own name. 

I know introversion runs deep, but even the most introverted pursue their passions and don’t give up on living life on their terms.

And yes, she processed a deeply damaging blow to her self esteem due to the divorce something which could have been worked out through therapy.

To further address future arguments that everyone dies of something somehow. It is where I offer the following:

Everyone does dies of something, somehow and at some time. It could be any time (today, tomorrow, 60 years from now) Should one assume they have time for all the things and experiences when they truly don’t? 

What holds you back from

  • trying new foods?
  • saying “Yes” to new experiences?
  • going someplace you’ve never been?
  • making new friends?
  • learning new skills?
  • providing for yourself?

If the answer is based out of fear, past failures, or stubbornness; ask yourself why you are wasting the precious time you have in this life, holding yourself back from having the best life experience filled with joy, grand memories and lovely people who will enrich you.

I cannot promise you that you will not get LBD, or Alzheimers, or Coronary Heart Disease, or Clinical Depression, Diabetes. Nor can I predict you will get any of these. You may escape them all and live to be 100+ years of age like your two times great cousin Grace.

I simply want you to take calculated risks, get out there and never waste a minute of your life. Do not cheat yourself of opportunities when they present themselves.

On Losing One’s Mind

The three weeks spent away to assist my sister in preparation for the eventuality of placing our mother in palliative care was an eye and heart opener. Before travelling the 16 hours I had always thought I was a compassionate and kind person with extraordinary capacity for patience and understanding.

I was wholly wrong.

I did the research on several sites such as AARP, NIH, Alzheimers Association to get a grasp on this disease. None of which prepared me for what I was about to experience first hand.

For a bit of background please read about Lewy Body Dementia at – https://www.nia.nih.gov/health/what-lewy-body-dementia

This site has a wealth of information on what it is, how it is diagnosed, the symptoms and treatments.

My mother was diagnosed in April after my sister called in almost full breakdown due to the stress of caring for her as she lived alone and trying to care for her own family at the same time. I called a college friend, who is a neurologist to discuss the symptoms with him – the shaking, hallucinations, inability to maintain balance. He suggested strongly she see a neurologist in her area as soon as possible. He thought it might be Parkinson’s and not the good kind.

My sister arranged the appointment, and after the consult and imaging it was clear to that doctor that, mom had Dementia with Lewy Bodies (DLB). Her frontal lobe was separated from her skull at a much more advanced rate than anyone her age.

This disease as you have read has no cure, and will require nursing home care at some point and ultimately hospice care for her final days.

My trip was to go out there to her home and begin organizing the house to make it more simple to get around, and remove the unnecessary clutter, go through papers and collections and sort out all her clothes, shoes and such in preparation for palliative care.

When I got there, I started in on a room by room assessment with the knowledge that I would be focused on just the sorting and clearing. In her state of residence, they have a program which focuses on keeping the elderly in their homes for as long as possible.  It is called the LIFE program whereby care workers come to the home frequently to assure she is eating, bathed and has taken her medication and do light housework. These care workers came to mom’s home twice a day for such duties.

In my first few days I found out that the care workers were not as reliable as I was led to believe. Nor were they trustworthy, as my sister told me she caught one worker attempting to steal from her purse red-handed. She told me how that worker had stolen change and items prior to the purse incident and that that worker was fired. My focus now was to keep an eye on the remaining workers as I worked to assure they were on task and not rifling through my mother’s belongings to pilfer what they could.

As they arrived at 9 a.m. I thought I could sleep in and then take on each day while my mother was attended to. That also was not the case, as my mother would get up anywhere between 6:30 and 7 a.m. struggling to make her breakfast and get around the house. I had to get up to assure she did not fall as she had fallen five times within the prior week that I arrived.

Now I was having to assume care taking as well as the sorting. I had to parcel the time now to assuring she had her breakfast and was settled by the time the care workers arrived. When the care workers arrived they would take over and get my mom showered and dressed, do any laundry and picking up. That was about it. The rest of the time they just sat with her and watched television or dicked on their phones.

I do need to make a point to say that not all the care workers were this inactive. Two were outstanding. The others seemed to be deer in headlights and had no idea what to do when they got there. I had to instruct them.

Eventually, I was doing the meal preps for all three meals, cleanup and laundry. At night I had to assure she was readied for bed as well. This program was not all that it was cracked up to be. I was not making too much progress until my sister got off work to come by and assist.

To give you some idea of the task of clearing, this was not simply packing up a few things. This was evaluating everything my mother had amassed over her lifetime as well as items of her mother and father (as she kept all of their items as well). Photos were everywhere in the house, loose, album bound, in envelopes, bins, random stacks of frames, laced in bibles with other certificates of death, obituaries and other very important paperwork.

My approach was to retain all important paperwork, pictures and collectibles and give away any non essentials, such as small appliances in storage, books, clothes, tchotchke of no essential value. Believe me, the trips made to Goodwill were 2-5 times per day.

I learned that antique shops were no longer taking anything I had to offer as they said young people these days have no interest in these antiques. The local antique mall owner said I’d be better off just sending it all over to Goodwill or the Salvation Army.

We cleared out so many things that first week and part of next I thought I was going to be able to leave earlier than expected. However, my sister soon put that to rest when she opened the outdoor shed which was filled with refuse and storage cabinets filled with more “things”. I never swore so much in a single moment than I did when she opened those doors.

That is why I had the big purge of 2015 in our own home. We had an overrun of “things” that I did not want to burden you with. And although that was done, your dad amassed more “things” to fill the cleared spaces when his mother died.  We will need to do another purge again because you should not have to deal with this in the event we require 24 hour care and must be placed in palliative care.

I digitized all the photos and paperwork I found at mom’s and uploaded them to the cloud. My sister has all the originals should you ever want to see them.

Statistically we sent over 150 bags of trash to the landfill and gave away about the same to Goodwill of all the things which were not destroyed by time. We wrapped up 4 sets of china and a fifth remains to be stored as my sister sees fit. I found so many things of my childhood that I took back a parcel of some but not all.

Now that the stuff portion is out of the way, let’s talk about this disease. It is not known to be genetic BUT…

Rarely, the condition can affect more than one family member. Some of these cases appear to be due to single gene changes (mutations) that follow an autosomal dominant pattern of inheritance. Other familial cases do not follow a specific pattern of inheritance and likely have a multifactorial cause (associated with the effects of multiple genes in combination with lifestyle and environmental factors).[6][5]

My great grandmother suffered from something which is exactly like DLB. I was in high school when she came to live with us. She ended up losing her continence as well as her ability to feed herself and my grandparents went nearly destitute to pay for palliative care for her. She lived for 15 years.

There are genetic tests for the likelihood if you carry the markers for this disease. But you have to go to a health care professional to get these tests done.

https://www.ncbi.nlm.nih.gov/gtr/conditions/C0752347/

I have contacted GARD regarding testing and hopefully you and I can be tested to see if there is a predisposition to this in our own genetics.

https://rarediseases.info.nih.gov/about-gard/contact-gard

Another resource for factors that increase the predisposition for this disease

https://www.verywellhealth.com/lewy-body-dementia-risks-98761

I want you to know that if I fall prey to this I do not want to carry on with it. There are states with a death with dignity law in place and I will want to be moved there to have the choice of how I handle this. Oregon is nice.

Now, be warned I will be writing more on this subject as well as on my mother as there are some extra life wisdoms which came out of this visit that you may find useful on your life’s journey.

tworoads

Actions, Reactions and Choices – Oh My!

Ever have one of those mind blown moments as a kid? Something really profound happens or you hear something which causes you to stop and exclaim “Whoa!”

It happened to me while listening to a Rush song “Free Will” I was really attending to the lyrics and when Geddy got to this line, I had that mind blown moment:

“If you choose not to decide, you still have made a choice”

I was probably all of 13 at the time and I think my mind did just stop; simply hanging on that very line.

“Wait, what? Not to choose is a choice just as a,b or c? Whoa!”

Sometimes the best response to a situation is to simply, not choose to attend to it. I tried it out; and sometimes, it was the right thing to do –  as time had a way of showing me that not everything must be handled and things have a way of sorting out on their own.  Loads of stress lifted on that life’s little lesson.

But it goes deeper than that, I found. As time went on and I was exercising my choice to not choose, I found that also how I regard a situation (my attitude) is a choice as well. Something truly shitty happens I have a choice to react poorly as a result or to choose to take it with grace or optimism- and as a result the impact on me will be different.

Remember that time when we all embraced the fad witty retort to “Have a nice day!” ?

“Don’t tell me what kind of day to have.”

Turns out if one chooses to be happy, it changes color on the whole day, week or even year regardless of the shit storm one may walk through. Sure it’s a challenge at times, and as in my prior blog entry, I mentioned you can choose to let your weakness show to keep it from building up and destroying you from the inside.

We do face challenges each and every day, some poor interaction with a person and we have the choice of reacting poorly, reacting positively or simply not reacting at all. It just takes a bit of thought.

Not choosing can have a more profound impact than choosing path a or b.