My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
Wobble wobble shuffle stop and sit wobble limp stumble stop and lay swallow gag swallow chew two more pills just two another to improve the two in three hours two more And another wobble wobble shuffle stop, well shoot repeat
The repetition is short and close together. and more of one causes another It's a struggle to find what works a strain to ignore society's jerks who can only understand that gray hair and a cane signal help who without these attributes cannot detect their own short comings
Mini sicknesses and recoveries abound five solutions a day are found But often the fix exists for merely one or two events the frustration and stress come down as the on time is fleeting and defeating
Parkinson's disease sucks big time. Parkinson's sucks small time. it sucks anytime. It, Parkinson's, gets in the way of life IT gets in the way of eating IT gets in the way of drinking IT gets in the way of dancing IT gets in the way of walking IT gets in the way of driving IT gets in the way of social relationships THEY can be embarrassed by being friends of someone with a chronic condition THEY can be embarrassed by being friends of someone with a ironic condition but rarely are. THEY will always hold the door for gray hair and a cane but not for the companion and the campaign
And politics does not matter skin color does not matter religion does not matter gender does not matter IT singles out no one IT has no cure IT is the gift that keeps on giving IT gives more as age progresses
And then there is Lewy's bodies but not always are the bodies buried where they can be found the recoveries abound
The democrats say: Let us beset the Donald, because he is obnoxious to us; he sets himself against our doings, reproaches us for his transgressions of the law and charges us with violations of our training. Let us see whether his words be true; let us find out what will happen to him. For if he is of the Right, the Right will defend him and deliver him from the hand of his foes. With revilement and torture let us put him to the test that we may have proof of his gentleness and try his patience. Let us condemn him to a shameful defeat; for according to his own words, his base will take care of him, And keep him from injustice should he shoot someone on 5th avenue or unconsciously grab a pussy.
The republicans say: Because a friend of mine is come off his rocker to me, is no reason to abandon his lead, and I have not what to set before him nor enable the smooth road. And he from within should answer, and mightily tweet: Trouble me not, the door is now shut, and my children are with me in bed, I have circled the wagons. I shall have builded walls. This is TREASONETH. I cannot rise and give thee entrance unless thou hast useful merit. Yet if they shall continue knocking, I say to you, although he will not rise and give him entry, because he is Giuliani, yet, because of his importunity, he will rise, and give him as many as he needeth. And I say to you, Ask, and it shall be given you: seek, and you shall find: knock, and it shall be opened to you. For every one that asketh, receiveth; and he that seeketh, findeth; and to him that knocketh, openeth, except democrats for that would be counterproductiveth. Both golf and chocolate cake enableth me to vanquish the wicked, and seek justice within thy senate for the Mitch is with impunity instead of importunity And therefore a lameness of duck besets him.
The independents say: Importuning notwithstanding the jig is upeth! We have supported thee and yet thou has forsaken us. We have given thee leadership and thou hast taken favors. We have accepted tariffs and you have favored iPhones. We have raged at GM and you are but a banging gong, a clanging cymbal. We wish for infrastructure and you give us rants against four women of color unimpressed with your newyorkness. We are wondering if the swamp is actually republican in its essence and therefore undrainable. But mostly we are saddened by the mess.
There is a religiosity to the whole impeachment furor.
…we’ll see. That is the Donald’s go to comment. We’ll see.
A funny thing happened on the way to the funeral – going to attend a memorial service presents a business opportunity when directions are requested at the cemetery business office.
Laura’s Grave marker
There is something inherently moving about a gravestone covered in leaves in the fall of the year.
Families and bitterness – someone will express displeasure with a jilted lover attending a service of dubious religiosity and unknown allegiance. So few attend to commemorate a wonderful life.
Families and loss – remembrance of those gone before and thoughts of how it could have been. Children scattered to the wind and over the mountain.
When people we know pass from this fragile existence, it reminds us of His plan if there is a plan and our own fragile existence.
Anxiety and worry — always worse in the early morning hours. What am I forgetting? What is important tomorrow, er, today? Many of us have struggled with these thoughts during our working careers. Retirement would take us away from all that or maybe not. With Parkinson’s disease retirement plans dissipate quickly. The caregiver’s role is a full time activity.
Things forgotten — Losing a name, hunting for the correct word, using a different word because right one is not there.
Perception of the physical world — From birth most of us have a sense of touch, a sense of smell, a sense of sight, a sense of hearing, a sense of taste, a kinesthetic sense (where we are in space) and from these we develop an awareness of our selves and our surroundings. What happens when one or two or three of these go awry? When numbness appears in your extremities it is hard to feel a keyboard and if you spent your life keying input into a computer keyboard, it creates a frustration that can only be understood by you. When smell goes away, it takes with it most of our sense of taste. And plants the seed of, “do I have body odor?” Parkinson’s patients have a diminished kinesthetic sense. This one is the feedback to the brain about movement and motion. Close your eyes and listen to this sense. See if you can touch your nose with your finger. Touch is specially important cold, hot, wet, dry, pressure, soft.
When you can’t believe your senses — your brain can run wildly to extremes.
Trust in others – fades.
Anger and frustration – appear in the place of trust
Convincing solutions – certainty of how to fix it coming from a confused and less cogent brain.
Commitment – we’ll see… But not strong commitment to any fleeting solution to whatever the current issue is.
Love and caring – from the partner (who is also losing sleep) that loves you so much and wishes deeply that this was not happening. But what is the actual cause of interrupted sleep or real insomnia? So here’s a list of stuff from info published by the Parkinson’s foundation.
Problems with Sleep at Night — There are several (only two in this article) problems that people with PD may experience during the night:
1) Sleep Apnea — Sleep apnea can be seen in up to 40 percent of people with PD. Common symptoms include: Loud snoring – Cheryl occasionally snores but typically not and when she does it is not loud or at least loud enough that I cannot sleep. To me, listening to her, it is comforting because she seems to be resting peacefully. | Restless sleep — sometimes but this seems to occur after she has been struggling after some computer snafu that has kept her thinking about an issue before going to bed. | Sleepiness during the daytime – occasionally but not anymore than me. | Pause in breathing during night sleep – I do not think so, but, admittedly I am not awake all night listening to her breathe.
So, I the not-medical person but the person closest to Cheryl who lives with her, worries for her health, loves her to an extreme and would go to the ends of the earth to find some solution to her difficulty, rejects the immediate diagnosis of sleep apnea. I could be wrong but I do not think she has this problem.
2) REM Sleep Behavioral Disorder — Rapid eye movement, or REM, sleep is a normal part of the sleep cycle when people dream. Usually the only part of the body that moves during REM is the eyes, thus the name. | People with rapid eye movement sleep behavior disorder (RBD) do not have the normal relaxation of the muscles during their dreams. Therefore, they act out their dreams during REM sleep. | People with RBD may shout, kick their bed partner or grind their teeth. Sometimes, in moderate to severe RBD, people may have aggressive, violent behaviors, like getting out of bed and attacking their bed partner. | About half of people with PD suffer from RBD. It may develop after or along with the disease, but in most cases, it precedes the PD diagnosis by five to 10 years.
Cheryl did not exhibit any acting-out of dreams before her diagnosis that I can recall, but , admittedly between job travel, three children, soccer games, other sports, vacation travel, and life in general I do not recall much. I think I was generally pretty tired when I went to bed so if she kicked me I probably thought it was because I was snoring too loud. But a few years ago, after her PD diagnosis and after she began seeing a different neurological doctor she started to occasionally awaken me by talking in her sleep. And occasionally poking me in her dream. I could awaken her and she had no recall of what she had done or what she was dreaming about.
So, I think this may be worsening. This morning she woke up in the recliner chair in the living room with no memory of getting there.
RBD Treatment (from PD Foundation article) — Consider making environmental adjustments to protect the person with RBD and bed partner from injury. This may include padding the floor, using bed rails or sleeping in separate rooms. — Cheryl has only poked me occasionally and refers to me as “Jan”. (When she was a child, she and her sister Janice used to sleep together in a double bed. I think she is dreaming and I am in it as Janice.) |More; Clonazepam has been shown in large case series to improve RBD in 80 to 90 percent of cases. The dose of clonazepam required is low, usually from 0.5 mg to 1.0 mg. The adverse effects of clonazepam include nocturnal confusion, daytime sedation, and exacerbation of obstructive sleep apnea, if present. It is in generic form and not expensive. | More; Talk to your doctor about the over-the-counter sleep aid Melatonin. Doses up to 12 mg at night one hour before can improve RBD. — Cheryl’s doctor has recommended Melatonin as a low key way to deal with a difficulty of getting to sleep. Perhaps it is time to develop a sleep routine and perhaps I need to be an active participant. https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Sleep-Disorders
Some anecdotes – Cheryl has become almost obsessive about incontinence. Perhaps every woman worries about this later in life. Perhaps it is merely exacerbated by the PD component of our lives. Nevertheless, she goes to bed with this on her mind and treats it with a pair of disposable underwear lined with another absorbent pad.
After 3 – 4 hours of sleep she awakens in a dream or at least confused and is convinced that she has leaked onto the bed. After discussing the fact that no others are with us she will throw those away and get a new set. Sometimes I have been able to convince her that there is nothing wrong, damp or funny-smelling about the bed but for the past couple nights I was unable to convince her.
Early this morning (9/29/19) she merely changed her paper underwear and went to sleep in the recliner where she awakened several hours later. She reported to me that she had no memory of how she got into the recliner although she has a fuzzy memory of putting the blanket we keep in the living area in the recliner and sitting on it. I heard her shuffling around a couple times but she may have been going to and from the other bathroom. (It is concerning to me that I have convinced myself to listen but not react to her wanderings at night and I am worried about her leaving while she is waking around in her dream state.)
And then when you think you are the only one with this problem, some one walks by with one ten times worse and you are humbled by that.
Then the sun comes up, you are tired but all is well. Be grateful for the day!
Accept with grace anything that happens for good or not so good. – even if you are pretty sure that Parkinson’s disease sucks.
I never feel a thing is real When I’m away from you Out of your embrace The world’s a temporary parking place Mmm, mm, mm, mm A bubble for a minute Mmm, mm, mm, mm You smile, the bubble has a rainbow in it Say, its only a paper moon Sailing over a cardboard sea But it wouldn’t be make-believe If you believed in me Yes, it’s only a canvas sky Hanging over a muslin tree But it wouldn’t be make-believe If you believed in me Without your love It’s a honky-tonk parade Without your love It’s a melody played in a penny arcade It’s a Barnum and Bailey world Just as phony as it can be But it wouldn’t be make-believe If you believed in me
Life is fleeting. Life is slow. Life is changing. Life is constant. Life is crazy. Life is sane. Life is odd. Life is normal. Life is happy. Life is sad. Life is busy. Life is peaceful. Mostly life is. And everyday is precious.
My sister-in-law, Nancy, is one of the very few people that I have met in life who impresses me with her life. By that I mean she is a person who has influenced, encouraged and helped others and, more importantly, she causes me to ponder, study and reflect on many issues for which she is passionate in her support. In a recent admonishment on Facebook she gave me an idea to ponder research and discover from whatever source — the GOOD things that our current President, Donald J. Trump has accomplished and stop focusing on the bad things. So, rather than dismissing her comments (below) as a simple tirade, I use it as a departure point for attempting to understand her point of view.
–> Your term “hijacking the Republican primary” is hurtful and dismissive of the millions of Conservatives, like me, who voted to save our country from destruction. In my opinion, he was and IS the only person for the job! Hannity does not claim to be entertainment and he is not my favorite….try The Next Revolution’s Steve Hilton? Hannity does have an agenda, again, saving our country from destruction, aka the lies and corruption on the left AND in government/the SWAMP in general. He is there to keep our spirits up as the liberal left tries all day, every day, to beat Conservatives down. “Justice” has favored Dems for too long! It is supposed to be BLIND! And, sadly, The media is no longer there to report the news, most are there to get out their narratives. It would be helpful if smart folks like you tried looking into ALL of the GOOD that our President has done and stop dwelling on and perpetuating hate just because you don’t like someone’s personality?! The View, and all of us would be better served if we stopped the hateful, hurtful comments and looked for the GOOD. Our President LOVES our country and came from the business world and the entertainment world so some of his braggadocious (sic) personality came from that. We are all products of our upbringing and do our best to change and grow into the lives we are living now. 🤷🏻♀️ Praying for PEACE 🙏🙏😊
This small article will make reference to others that I have read in my research. I will show the link to these references and I hope that the links will still be active to anyone who reads this. If they are not, I apologize. Their are a lot of articles in many different publications. The first article (opinion piece) by Marc Theissen repeats in many daily newspapers as he is a syndicated columnist. By the way — the web address of the article referenced is in BOLD.
Since the comments were made on Facebook a social media website initial research was completed (but maybe not) by using various search phrases in Google; “What good things has Donald Trump accomplished as President?” was my initial search question. This of course elicited many of the same response because, I think, FOX & Friends stick together and repeat the same information over and over. Many of these including Kellyann’s list from WhitehouseDotGov are shown below with links.
I read a lot, especially about business ideas and what is new and what is affecting the markets and so on. Over time, through the blather I have collected some of my own list. All of us have our own reality based on our own perceptions, a solipsistic philosophy which is all our own.
10. His comment about “shithole” countries blew up negotiations for a deal that would have given Trump his border wall.
9. His offensive tweets continued to undermine his presidency.
8. His misuse of power turned critics into martyrs.
7. He drove away suburban voters and caused the GOP to lose control of the House.
6. His graceless handling of Sen. John McCain’s funeral was a new low.
5. His handling of Jamal Khashoggi’s murder harmed America’s moral standing.
4. His news conference with Vladimir Putin in Helsinki was an embarrassment.
3. His policy to separate migrant children from their families at the southern border was an avoidable tragedy.
2. His planned withdrawal of U.S. forces from Afghanistan is a gift to the Taliban and al-Qaeda.
1. His pullout of all U.S. troops in Syria will take America’s boot off of the terrorists’ necks. (He hasn’t done this yet. Mattis left prematurely.)
Marc continues with — It is notable that, with the exception of troop withdrawals and family separations, most of the items on this list were transgressions of style rather than substance. With the mute button on, the Trump presidency is pretty good from a conservative policy perspective. And yet Trump’s approval rating at year’s end is just 39 percent — because most Americans don’t follow politics with the sound off.
The Atlantic is a magazine that I do not subscribe to but I read articles from online from time to time. Most magazines of this type will allow you to read so many articles per month (4 or 5 typically). At this place on the web they have pointed to many articles about things – good and bad – that Pres. Trump has accomplished. https://www.theatlantic.com/unthinkable/ Below are the Atlantic’s editor in chief’s words.
In an October 2016 editorial, The Atlantic wrote of
Donald Trump: “He is a demagogue, a xenophobe, a sexist, a know-nothing,
and a liar.” We argued that Trump “expresses admiration for
authoritarian rulers, and evinces authoritarian tendencies himself.”
Trump, we also noted, “is easily goaded, a poor quality for someone
seeking control of America’s nuclear arsenal. He is an enemy of
fact-based discourse; he is ignorant of, and indifferent to, the
Constitution; he appears not to read.”
In retrospect, we may be guilty of understatement.
There was a hope, in the bewildering days following the 2016
election, that the office would temper the man—that Trump, in short,
would change.
He has not changed.
This week marks the midway point of Trump’s term. Like many
Americans, we sometimes find the velocity of chaos unmanageable. We find
it hard to believe, for example, that we are engaged in a serious
debate about whether the president of the United States is a
Russian-intelligence asset. So we decided to pause for a moment and
analyze 50 of the most improbable, norm-bending, and destructive
incidents of this presidency to date.
Our 2016 editorial was a repudiation of Donald Trump’s character as
much as it was an endorsement of Hillary Clinton for president. It was
not meant to be partisan. The Atlantic’s founders promised their
readers that we would be “of no party or clique.” This remains a core
governing principle of the magazine today. What follows is a catalog of
incidents, ranked—highly subjectively!—according to both their
outlandishness and their importance. In most any previous presidency,
Democratic or Republican, each moment on this list would have been
unthinkable.
On the article site, Marc writes specifics about each point below. Some of his points are not easily supported by fact but he has stated them to be of some truth.
IGNITING A HISTORIC ECONOMIC BOOM: President Trump’s pro-growth policies are unleashing economic growth and providing opportunities to workers across the country.
ROLLING BACK RED TAPE: President Trump is rolling back costly regulations that have burdened hardworking Americans and stifled innovation.
NEGOTIATING BETTER DEALS FOR THE AMERICAN PEOPLE: President Trump is negotiating fair and balanced trade deals that protect American industries and workers.
UNLEASHING AMERICAN ENERGY:President Trump is rolling back costly and burdensome regulations to unleash America’s incredible energy resources.
EXPANDING OPTIONS FOR QUALITY AND AFFORDABLE HEALTHCARE:President Trump is expanding access to affordable healthcare choices and taking action to lower drug prices.
FIGHTING BACK AGAINST THE CRISIS NEXT DOOR: President Trump mobilized his entire Administration to combat the opioid crisis that has devastated communities across the country.
STANDING UP FOR THE SANCTITY OF LIFE AND PROTECTING RELIGIOUS LIBERTY: The President is committed to defending the right to life and religious liberty.
KEEPING AMERICAN COMMUNITIES SAFE: President Trump has made clear that his first responsibility is to protect the safety and security of Americans.
ENFORCING OUR LAWS AND SECURING OUR BORDERS: From the first day of his Administration, President Trump has worked to uphold the rule of law and secure our borders.
REBUILDING AMERICA’S MILITARY FORCE: President Trump is rebuilding our military and defending America’s interests across the world.
RESTORING AMERICAN LEADERSHIP ABROAD: President Trump is restoring American leadership on the world stage and advancing an America first agenda.
HONORING AMERICA’S COMMITMENT TO OUR VETERANS: President Trump is honoring America’s commitment to our veterans by ensuring they receive the quality care they have earned.
TRANSFORMING GOVERNMENT: President Trump has followed through on his pledge to transform the Federal Government and increase accountability and transparency.
Trump Administration Accomplishments from Whitehouse.gov
Almost 4 million jobs created since election.
More Americans are now employed than ever recorded before in our history.
We have created more than 400,000 manufacturing jobs since my election.
Manufacturing jobs growing at the fastest rate in more than THREE DECADES.
Economic growth last quarter hit 4.2 percent.
New unemployment claims recently hit a 49-year low.
Median household income has hit highest level ever recorded.
African-American unemployment has recently achieved the lowest rate ever recorded.
Hispanic-American unemployment is at the lowest rate ever recorded.
Asian-American unemployment recently achieved the lowest rate ever recorded.
Women’s unemployment recently reached the lowest rate in 65 years.
Youth unemployment has recently hit the lowest rate in nearly half a century.
Lowest unemployment rate ever recorded for Americans without a high school diploma.
Under my Administration, veterans’ unemployment recently reached its lowest rate in nearly 20 years.
Almost 3.9 million Americans have been lifted off food stamps since the election.
The Pledge to America’s Workers has resulted in employers committing to train more than 4 million Americans. We are committed to VOCATIONAL education.
95 percent of U.S. manufacturers are optimistic about the future—the highest ever.
Retail sales surged last month, up another 6 percent over last year.
Signed the biggest package of tax cuts and reforms in history. After tax cuts, over $300 billion poured back in to the U.S. in the first quarter alone.
As a result of our tax bill, small businesses will have the lowest top marginal tax rate in more than 80 years.
Helped win U.S. bid for the 2028 Summer Olympics in Los Angeles.
Helped win U.S.-Mexico-Canada’s united bid for 2026 World Cup.
Opened ANWR and approved Keystone XL and Dakota Access Pipelines.
Record number of regulations eliminated.
Enacted regulatory relief for community banks and credit unions.
Obamacare individual mandate penalty GONE.
My Administration is providing more affordable healthcare options for Americans through association health plans and short-term duration plans.
Last month, the FDA approved more affordable generic drugs than ever before in history. And thanks to our efforts, many drug companies are freezing or reversing planned price increases.
We reformed the Medicare program to stop hospitals from overcharging low-income seniors on their drugs—saving seniors hundreds of millions of dollars this year alone.
Signed Right-To-Try legislation.
Secured $6 billion in NEW funding to fight the opioid epidemic.
We have reduced high-dose opioid prescriptions by 16 percent during my first year in office.
Signed VA Choice Act and VA Accountability Act, expanded VA telehealth services, walk-in-clinics, and same-day urgent primary and mental health care.
Increased our coal exports by 60 percent; U.S. oil production recently reached all-time high.
United States is a net natural gas exporter for the first time since 1957.
Withdrew the United States from the job-killing Paris Climate Accord.
Cancelled the illegal, anti-coal, so-called Clean Power Plan.
Secured record $700 billion in military funding; $716 billion next year.
NATO allies are spending $69 billion more on defense since 2016.
Process has begun to make the Space Force the 6th branch of the Armed Forces.
Confirmed more circuit court judges than any other new administration.
Confirmed Supreme Court Justice Neil Gorsuch and nominated Judge Brett Kavanaugh.
Withdrew from the horrible, one-sided Iran Deal.
Moved U.S. Embassy to Jerusalem.
Protecting Americans from terrorists with the Travel Ban, upheld by Supreme Court.
Issued Executive Order to keep open Guantanamo Bay.
Concluded a historic U.S.-Mexico Trade Deal to replace NAFTA. And negotiations with Canada are underway as we speak.
Reached a breakthrough agreement with the E.U. to increase U.S. exports.
Imposed tariffs on foreign steel and aluminum to protect our national security.
Imposed tariffs on China in response to China’s forced technology transfer, intellectual property theft, and their chronically abusive trade practices.
Net exports are on track to increase by $59 billion this year.
Improved vetting and screening for refugees, and switched focus to overseas resettlement.
We have begun BUILDING THE WALL. Republicans want STRONG BORDERS and NO CRIME. Democrats want OPEN BORDERS which equals MASSIVE CRIME.
There is more but probably not from me. I care not what the Donald does. My total focus is on the person who lives with me and her disease and how I can better serve her needs. Stay tuned, there will be more theatrics from the White House and the reporters of the White House and to me it matters not.
With Parkinson’s disease it’s hard to discern what’s a disease thing, what’s an old-age thing, what’s a medication thing or is that a thing that’s always been there but now it’s more noticeable because I’m paying closer attention. I am unsure of these categories and unsure whether it is important or even significant to categorize various symptoms and features of this sometimes gone, sometimes debilitating disease.
New mental behaviors – vocal dreams, location confusion, physical dreams (not somnambulism), sense of an extra person or persons in the house, cognitive failure, short term memory impairment, minor mania, circular thinking, anxiety about imminent events, extra drama, heightened emotion, strong nostalgia.
New physical behaviors – inability to easily rise from a sitting to standing position, balance control, shuffled walk, a hard to describe fidgety motion while concentrating on another tv show or other activity, spontaneous loss of consciousness, sudden loss of stamina, chest tightness, mild nausea.
New combinational behaviors – incontinence anxiety, visual acuity and reaction to perceived emergency, thought vocalization, spontaneous tears.
Vocal dreams started early after Cheryl was initially given Sinemet as a treatment for PD. It is and old drug combination that dates from the 1960’s. I do not think she talked in her sleep before this prescription was given to her about 12 years ago. If she did it was not common or memorable. Her brother was somnambulant and she tells stories about him as a child walking about. Doctors seem to place importance on various family traits, so, Cheryl may be genetically predisposed to talking in her sleep. The Sinemet seems to have heightened this effect.
On rarer occasions she will act out the dream in bed. We sleep in a queen size bed and she will poke or push at me if that is what her dream requires. She can not recall her dream even if I awaken her from it.
The reference made to thought vocalizations is interesting to see.
Cheryl started sensing others in the room after we down sized into a 3 bedroom condo. It is a two story building and there are other residents above us that can be heard upon occasion. So, it is my guess that her brain is interpreting these occasional noises as someone else is here. Reasoning with her about it does not remain in her memory even though we have discussed this several times. We previously lived in a big old house with it’s own creaks and groans. She never reported sensing others around.
Cognitive decline is slow. Often she seems to get stuck. Which sends her into a “circular thinking ” mode that can be hard to break out of. A typical example; she has through 49 years or so of marriage been the family accounts manager. Plans a monthly budget, balances the checking account, an absolute hawk on credit card purchases. I have misplaced receipts in the past, never again. She is good at it. I think it is enjoyable to her. Recently she forgot to note an ATM withdrawal in the check register and additionally she noted an ATM deposit twice. The combination of these two errors got her “stuck” and launched her into a circular review of her entries for days (evenings actually) until I got her to tell me what she was in a panic about. I use the term “circular” because she wound find one error and lose it before finding the other. Around and around for several days.
Forgetfulness is a mishmash of things. Not finding the right word. Saying a word that means the opposite. Or simply forgetting what we were talking about 5 minutes ago, so, we have to repeat it. For me, her husband and caregiver, its exasperating. I keep plugging ahead.
Oh, by the way, Parkinson’s disease sucks. Big time!
I learned a lot of bad habits from Mom. I learned many good habits from Mom. I learned a lot of odd methods from Mom. I learned a lot of non-methods from Mom. I learned good versions of all of these too. But mostly I learned stuff.
Moms are great for that – teaching stuff to you, the kids. Even if you did not want to know about it, you were getting the lecture anyway. I smile as I write this because it makes me smile.
Mom is a horizontal filer.
Paper in various forms, newspaper, magazines, bills, flyers, catalogs, birthday cards, etc. comes into every dwelling constantly. In Mom’s case no filter or system of triage is applied when the paper arrives. All is placed indiscriminately and horizontally onto a near at hand flat surface. Usually this is a table. This table may be in the kitchen, dining room or living room. There is no specification other than the surface is to be horizontal and 20 – 30 inches off the floor.
This
format was the predominant filing format of any and all paper that
entered the house. Of course some paper comes into view at special
times and due to this timing achieves special status for a short
period. Newspapers are of this ilk arriving as they do at specific
times of the day and requiring only a temporary attention.
As paper accumulates of course it becomes necessary to deal with the encroachment into other spaces used for eating, crafts, writing and other activities. This requires a neatenment activity. Paper is stacked. Sometimes it is also sorted by size. Occasionally it is filtered by importance into loose categories; bills and flyers and ads, bills and charitable appeals, stuff that is neither of these, magazines, catalogs too small to stack properly, other.
None
of this paper is of long term interest other than invoices.
Eventually these are sorted and selected for payment.
This may seem a disorganized arrangement. Consider the alternative stress inducing method of filtering and sorting every piece of mail as it enters the house. I have modified the method slightly by applying certain detection techniques to the mail stream and collecting billing notices into their own stack. No other sort is applied to the pile of paper beyond that.
I think Mom taught me this same method by observation. Children spend a lot of time watching their parents every move. My personal area in this living space looks much like Andy Rooney’s office. Perhaps Andy’s mom was a horizontal filer.
Mom is a down-sizer.
As
we age we forget that we are not twenty years old anymore. I have
noticed this creeping into my own life as I get older.
Recently my wife and I summoned up the courage to make a change in our lives that we believe will enhance our future (golden) years. We spent 35 years of our life in a five bedroom house with a 200 square foot eat-in kitchen and an even larger dining area for big family gatherings. We have had as many as 50 people in the first floor at one time although not seated around the same table. The house is wonderful. Built in the very early part of the twentieth century. In a perfect neighborhood to raise children. I don’t think either of us thought much about leaving until we seriously started to actually do it.
Mom and Dad did the same thing in about the same time in their lives. It is remarkable to me how similar these two moves are. Single floor plan, three bedrooms, two baths. Garage. Smaller space. No basement.
So, after thinking and discussing this for approximately a year we moved. Most everything is stored, sorted, poured over and away somewhere. Done. The deed is done. On to the next new adventure!
Another observational lesson.
In her later years Mom’s mind flits from thought to nuance to detail to expected failure to indecision to stasis.
Focus is harder as I get older. This observation I wrote about Mom but in the retrospective of several months (now years) time I notice this in myself. Dang! Maybe I’ve been doing this all along. Alas.
It could be that the way to combat this activity is to do what it is that is thought of as a good idea at the time without regard expected failure. Be adventurous. See how it turns out. Why not? What the hell! Live a little.
Another aspect of this is the nagging feeling in the background that Cheryl is getting more frail as we age together and her Parkinson’s takes up more of her effort. I need to do two things: not dwell on this greatly, and, in fact, push her to keep going; be perceptive enough to recognize when this isn’t working and back off. Tricky.
The lesson here may not be as apparent as it ought to be. We are only here for a short time. All the major religions teach this. We should be satisfied with that time that we are here. But while we are here why not make the most of it? Pursue your passion. Live a little.
Mom believes in perceived authority.
The news is a perceived authority, at least, if it comes from a major news outlet. The church is not. Advertising, against the background of a major news outlet, is a perceived authority. Religion is not.
New drugs are hyped by the makers of them (a perceived authority). Too fat? Take this. Too tired? Take this. Life is getting shorter? Take this. Can’t get it up anymore? Take this.
If
you read it in “The Sun”…
Doctors know everything. (maybe) But this book says do this. And on and on.
We all do this in some fashion. I think because my mother did it so often, I became immediately skeptical. I am searching for the proof in the pudding.
I think when she got to the end of her life Mom was still searching. And I perceive very little from authority. I want to know the background, the data collection techniques, the sources, etc. She taught me to be a skeptic.
Mom believes in marketing but not advertising.
In an old conversation with Mom after my sister and I helped her move to a retirement community;
“They must be struggling to keep this place rented. I think they have a lot of vacancies here.” – Mom
“What
makes you say that?” – me
“They have been advertising in the paper.” – Mom
We were talking about The Seasons Retirement Community. They had changed hands a few months prior to Mom moving in. This is a place were the average age is about 85. The population is not so old that someone was being hauled out in the back of a hearse each day but it is close. (In fact there is a freight elevator and a dock in the back off to the side hidden from immediate view.) Turnover was high. The line was not out the door waiting to get in.
My general impression was “cruise atmosphere while awaiting death”. That sounds harsh but most retirement communities give off that vibe. Later after Mom was gone and buried, a friend, Bill was on a waiting list to get in. They were full up. The new management had corrected the leakage.
Advertising works.
Mom believes in herself and her own self reliance. (It terrifies her that this is slipping away.)
Some notes from conversations at the very end of her life. Joyce and I had moved her from Seasons to Bridgeway Pointe which is a part of UC Health. Not quite a nursing home but greater services than a retirement community.
When I was much younger, Mom used to say, “pull up your socks!” By that she meant be self-reliant. Don’t wait for anyone else to do it for you. You have to make it happen yourself.
“I don’t really need that much help.” She tells me constantly. But today (approximately four years ago now) I found out she is suffering from a episode of the stomach flu wandering around the building. A little gastrointestinal distress others have had in the assisted living facility. She needed help and thankfully she was in the right spot to get it.
June, 2015: I just paid Mom’s Bill’s – she only has one or two besides Bridgeway Pointe. (It just dawned on me how hard that is for me) I have learned – rightly or wrongly that I have weak organizational skills. I look around my office and realize that I too am a horizontal filer.
September, 2015: Mom has insisted she wants me to help her use her walker. I guess I will help coach her. But I never did. At this point in her life she started sitting in a wheelchair or a lift chair. She never got up without assistance ever again. I would push her places.
There is grace in allowing someone to help you.
My italicized remarks about Mom are in the present tense because that’s how I think of her when I think of her. I can actually hear her voice. I guess I didn’t fall far from the tree.
Adjunct_Wizard 