Johnny2Toes' Blog

Living with Alzheimers, Thoughts, Rants, Raves

As per my usual morning routine, I was scanning the news online and came across and ad. Gee, imagine that. The ad is for an alternative shopping tool. Customarily, I try not to mention names as I’m not a shill for any one thing in particular. The ad is a link to the alternative mentioned above. The link consists of a picture and under that some text which says something to the effect of . . . Seniors, do this before renewing your membership. It’s Genius! The picture above the text shows a young lady holding two shipping boxes, one on each shoulder. I just happened to have two shipping boxes from the same company as in the picture. I placed the two on my shoulders, just as in the picture. Nothing happened! I renewed my membership, then clicked on the ad just to see what’s so “Genius” about this alternative shopping tool. The way I see it, it’s just another way of customizing ads to suit my shopping needs, or some such drivel.

Another example. I saw an ad once that showed a picture of a plate of shelled hard boiled eggs and above the plate a hand holding a spoon containing another shelled hard boiled egg. The caption under the picture said . . . Do this before buying another diabetic supplement, or something to that effect. I clicked the link more out of curiosity than anything else and was directed to a site promoting some book, diet or “One Simple Trick” to help combat or cure diabetes. What nonsense.

I know what many of you are thinking, just another old guy bitching about click bait. You know what? You’re right. It would be much nicer if the company putting their product or service out there just state in the ad what it is and drop a link in the text. I understand that doesn’t play well in today’s world. No bright shiny things to catch the attention of God knows how many mind numbed people looking for answers.

For my part, I’ll continue on my own path. When I need a product or service I’ll look for several solutions. After I find at least three and as many as seven businesses that offer a solution to my need, I’ll research each one make a decision based on my findings.

I hate advertising. Well, not really. What I hate about advertising is the way it’s presented. It’s an age old way of doing things. Have you ever bought a new or used car from a dealership and noticed that the dealership has placed some form of branding on the car? Usually its a branded license plate holder or perhaps a decal on the trunk. You know, Joe’s Auto Sales. Anyway, as we were about to finish the paperwork on the car we just bought, I told the sales manager that I wanted either $1000.00 cash or the same amount deducted from the sales price of the vehicle. When he asked me why, I told him that I wanted to be paid for allowing his advertising on my car. He took the license plate holder off the car. If I’m a product or service provider and I want to advertise my wares, I pay some outlet to run my ad. Why should car dealers be any different?

Ah well . . . .

At least for now . . .

For those of you who have read the tale of our journey with Alzheimer’s Disease, it affected my father. After a lengthy battle with this disease, he succumbed. I won’t go into all of the details, but his behavior followed what is classically written about on so many sites and in so many different publications. There can be varying degrees of the behavioral patterns associated with the different stages of Alzheimer’s, but the end is usually the same.

I have an uncle who has been diagnosed with Alzheimer’s and has been living with it now for 4 or 5 years. Aside from his disease, he is in excellent health. He still has great long term memory, but his short term memory is almost non-existent. An example of this is that when we visit he immediately recognizes us and we spend many fun and fine times with him. A few minutes after we leave his house, he forgets we were there.

Another part of this story that I haven’t written about is that about the time my father was diagnosed with Alzheimer’s Disease, my mother was diagnosed with Frontotemporal Dementia, or FTD. There is an excellent article about FTD from Johns Hopkins Medical which you can find here. I’m not an authority on the subject so I won’t try to explain it all. You can read this excellent article for yourself, just follow the link.

Mom held it together long enough to be able to help and care for my father until the end. The last month or so of his life, I was there with him 24/7. I can’t bare to write all the details, suffice it to say that it was one of the worst experiences of my life. That said, I wouldn’t trade those last days for all the money in the world. It was a humbling experience to provide care and comfort to my father, the man who did so much for me through all the days of my life. I will truly cherish those last days till the end of my days.

Soon after my father passed, my mothers disease progressed at a fast pace. Agitation was the first major symptom followed by short term memory loss. It got to the point where she was forgetting how to cook for herself. Her driving skills deteriorated as well, and we were forced to keep her from driving for her own protection. It was at this point when my mother was placed in hospice care.

Over the next few months, her condition continued to deteriorate and she was becoming less and less able to function. My sister and I were by her side continuously in the last week of her life, and we were there when she passed. She did it her way, in her own house, in her own bed, with her children by her side. I can’t describe the emotions we went through, but I can tell you this, she was at peace and pain free. What more can anyone ask. As with my father, I wouldn’t trade those last days for all the money in the world. A man cannot ask for a better gift than to have the honor and privilege of caring for his parents till the end.

When I first started writing about Alzheimer’s, I had planned to document the journey but I came to realize that I just couldn’t do it. The ups, the downs, good times and bad times, all are too personal to me to write about in this venue. Perhaps in the future I’ll write more, but not just yet, it’s still too raw and personal.

In closing, I would like to say a few words about Hospice. We were fortunate to have a hospice team that was beyond praise. The provider we engaged for my mother was the same one we hired for my father. This was a group of professionals, a team really, who far exceeded anything we expected. From the medical director to the nurses and CNA’s, we couldn’t have wished for a better team. This team along with the social worker and religious advisor were definitely a step above. They worked seamlessly in concert with us, and each other. Their love, compassion, knowledge and skills were phenomenal. I would give them a plug but I don’t have their permission, nor have I asked.

I will tell you this, I was ignorant of just what a hospice team is capable of. I had this very shameful idea that hospice was there medicate a patient till the end of life. I saw it as a kind of warehousing. This could not be further form the truth. This team of professionals is highly trained and they show an abundance of love and compassion for those under their care. Not only for the patient, but for the family as well. They laughed with us, they cried with us, they kept us informed all along the journey. The nurses didn’t pull any punches nor feed us sugar coated words. The CNA staff were able to provide a level of comfort care to our parents that was extraordinary in every respect.

With all my heart I pray that no one will be in need of a hospice team, but if you find yourself in that circumstance, be assured that your loved one will be very well cared for. Honestly, I don’t know how we as a family would have been able to cope with the various situations we were in. The hospice folks were such a blessing. These are a group of professionals who do what they do not just for a paycheck, but more importantly, they have a very real desire to help when help is needed most.

Thank you my friends for taking the time to read this article. I would appreciate your thoughts or comments.

I’ve been known to open a can of worms or two over the years, and I’m probably going to open another one right now. If you don’t like worms, I apologize.

For more years than I care to remember, I’ve jokingly referred to myself as the old fat white guy. I heard various replies of ‘oh, you’re not fat’ or ‘you’re not old’. No one has ever told me ‘you’re not white’. Fact is though that by current standards I am indeed white. Well, not exactly white. Some have told me that I have an olive complexion, but what does that mean?

I know that there are green olives and black olives, and maybe a few other colors to boot, so what does exactly does that mean? Does it mean that my skin is black, or perhaps worse, green? Hmm, let me think . . . Olive skin? Green olives in this context, that would make me a green man. Wow! Being a little on the short side, that would make me a little green man. Back in the 40’s that would make me an alien from another planet. Oh Great! Now I’m an alien from another planet. I’m so confused.

Let’s go back to my statement about me being white. Is that really true? Given the demographics currently in use today, I am white, but again, that’s not true. I recently painted a room in my house and got some white paint on my hand. I looked at it and was shocked to find that the color of my hand contrasted sharply with the white paint. Were I indeed white, my skin would have blended nicely with the paint.

Can you tell that I am really offended by classified as white? This classification irritates me so much that when filling our paper work for this or that reason, I invariably come to a section where I have to identify as White, Black, Hispanic, Asian etc., or Other. I always check Other. Why? Because I don’t identify with being in any category I’ve seen listed.

Maybe they should include two other races. Human and Illegal Alien. Oh My!! How politically incorrect and insensitive. Oh bother. The Human race would be my first choice, and in my case, illegal alien would also be perfectly acceptable because, if you recall, I’m the little green man from another planet who must be here illegally. But why illegal? Because I didn’t clear customs when I landed here, which means I’m here illegally.

Seriously though folks, with respect to skin color, I’m color blind. Race, color, gender, or any other descriptor for that matter, really means nothing to me. I treat everyone with respect regardless of any of the above. People get it, the media and politicos don’t.

In closing my friends, I ask a simple favor. If you ever see a little green man walking down the street, wave and say hello. If you do, I will surely return the friendly gesture with a wave and a smile.

I heard a story on the news recently that caused me great concern and consternation. There is a certain private school which provides an “Inclusive Language Guide” for it’s staff and parents of children attending this school.

There are many things in this guide which I find offensive, and to me personally is the bit about role and sex as it pertains to the family unit. A quote from this guide states: “it’s important to refrain from making assumptions about who kids live with, who cares for them, whether they sleep in the same place every night, whether they see their parents etc.” Below this statement is a chart showing conventional verbiage with respect to family and other relationships. Instead of mom/dad, its recommended to use grown-ups, folks, family or guardians. instead of saying husband/wife or boyfriend/girlfriend, its recommended to say spouse/partner/significant other. The chart I reference is a bit more detailed, and you can see the whole thing here.

So yes, cancel culture strikes again. Goodbye mom or dad, so long brother or sister. The Coneheads characters from Saturday Night Live, Beldar the male and Primat the female, were referred to as the Parental Units. Their daughter Connie was referred to as “our young cone”, or simply as “our young one”.

Go ahead and denigrate mothers and fathers around the world. God forbid we should use terms of love, respect and endearment. In fact, why not cancel Mothers Day and Fathers Day? Why should these “Folks” be honored in any way? What have they done to deserve such recognition? Here’s a thought, instead of celebrating our mothers and fathers, why not just combine them into one day? Lets call it Parental Units Day. Much more inclusive, don’t ya think? It wouldn’t really celebrate who and what mothers and father are, but rather it would recognize those who are the progenitors of our species.

Hey cancel culture, here’s a thought, why not cancel gender specific clothing. Perhaps Mao Zedong had it right. Chairman Mao saw the power of dress to present a shared national identity. Mao liked a shapeless four pocket worker’s jacket that quickly became the standard of dress for men and women throughout the years of the 50’s and 70’s. There you go, problem solved. No more gender specific clothing, we all just look alike.

I wanted to title this article a differently as initially, I wanted to share the experiences I had while helping my father as he went down the road of Alzheimer’s Disease. I wrote a few drafts along those lines, but in the end, decided not to publish them. I would rather end my (our) journey down this path in a different and somewhat happier light.

There are so many articles already published online about Alzheimer’s Disease. Anything from prevention, causes, various treatments, behavioral patterns, and so many other topics on this disease that are too numerous to mention. Many of the published works have been written by this or that professional, scientist, doctor, nurse and others in the field. In addition to these works are other articles published by those who either are currently dealing with the effects of Alzheimer’s Disease, or have already been down the path of this scourge which has affected so many.

After much thought on this topic, I made the decision not to share the experiences that we had as a family. It’s over now, my father recently passed after a long struggle. So where to go from here? Read on for the answer . . .

As my father’s disease progressed, and as his behavior patterns changed, it became necessary to move in and care for him for a period of time. There were many heartaches, and many tough challenges, but we endured. And I say this because of the love I have for my father. Let me tell you that the past month or so, and the endless moments spent with him and caring for him while he was going through all of the various changes afflicting him, were precious to me, more precious than mere words can adequately convey.

You might have noticed that I jump between “I” and “We” a lot as I am writing this. We came together as a family to care for our father, husband to our mother, and leader of our family. Each of us had a role to play in his care, and these roles frequently overlapped. It’s difficult at times not to drift between I, me, us, ours, and other words expressing what was happening.

There is no greater gift to receive than the gift of helping and loving someone so near and dear. Alzheimer’s greatly affected my fathers cognition, and his ability to grasp even the most rudimentary of things. There were times, when he recognized no one, other times, when he recognized perhaps a few of us, and still other times when it appeared, to us, that he was comfortable being around us.

Through all of that though, my feelings of love for this most wonderful man, my father, grew beyond bounds that that I could scarce imagine could exist. Here was a man, the greatest I ever knew, my father. Strong and proud, business man, teacher of all that is right, just and honorable. He was a man who, more than any other, taught me what is was to be a man. And at the end of his days, here was a man afflicted by one of, if not the worst, maladies that can affect a person. It was my privilege and honor to serve, assist and love him in his last need.

Alzheimer’s Disease is a terrible thing to endure. It may be that there will be a cure one day in a distant future. There are many holistic measures that can possibly prevent, or at the least, lessen the severity of the progress of this curse. But for today, and for some time to come, there appears to be nothing on the table for an end to this most awful disease.

We were so fortunate to have had the help of a very loving and caring health care team that came to his aid. Without their expertise, love and concern, things would have been much worse. When his condition became so dire that we were not able to adequately care for his needs, we placed him in a memory care facility. One afternoon, he quietly went to sleep and never woke. His nurse was by his side at the time of his passing. I can tell you that as he passed, there was a look of piece about him, all pain and confusion were erased. The long sleep began.

Thank you for reading my friends. I wish you all peace in your lives.

Greg

It’s been almost a year since my first post about Living With Alzheimer’s Disease. During this time, we, as a family, have been confronted with so many changes as my fathers disease has progressed. He stopped driving as he was aware that driving a car made him nervous and afraid. The simplest routes he often drove became hard for him as he often would become lost.

After my father gave up driving, the changes started to happen on a monthly basis, and sometimes a weekly basis. The behavioral changes were subtle at first, lapses in memory, brief periods of agitation and the like. But still, he was fairly coherent and able to hold simple conversation.

Around June of this year, the changes began to occur more frequently and were no longer so subtle. His thinking patterns became highly erratic, his communication skills deteriorated, and the bouts of agitation became more frequent. With the advent of Covid, Dad was no longer able to get in person visits with his doctor. Tele-health visits were initiated.

I should mention here that my father has other health issues he has been treated for for many years. Severe back pain from an injury sustained back in the early ’70’s, for which he has undergone 8 major surgeries and other forms of treatments for pain too many to list. Through this decades long ordeal, he has never been pain free. In addition to the back issues, he now has scoliosis which causes mobility problems. He can walk, though its painful, and he needs and uses a walker. Dad is also in stage four renal failure which adds to the other problems. And as if all of this isn’t enough, he’s also practically deaf.

So, where are we now? About a month ago, dad managed to get out of the house late one evening. Fortunately, a neighbor saw him and came to be with him as other neighbors gathered. One of the folks there, woke my mom, and she went out and coaxed him back into the house. The next day, we installed locks that need a key to unlock from the inside as well as outside thus ensuring that he could no longer venture out. He hasn’t tried to go out since that time thankfully.

A couple of days later, I came to my parents house to help out, and have been here since. I’ve taken over almost all of the daily chores, cooking, cleaning and such. My mother is grateful for the help and is able to relax a little. Between my sister and her husband, they live close by, and myself, we manage very well now.

Also this past month or so, dad was placed in hospice, and that has been a blessing. The team we have are wonderful, and the medical attention he needs is just a phone call away. The folks from hospice provide weekly nursing visits, a weekly social worker visit, CNA’s who come twice a week to see to his more personal needs, hygiene and the like. We also have access to home health care which allows us to go out for shopping or whatever we need while at the same time, providing a licensed care person to be in the home,

In my next article, I will be writing about behavioral patterns and some of the the issues we are faced with on a day to day, and sometimes hourly basis. There are a couple of reasons I feel compelled to write so openly. The first reason is to give an insight into what its like living with this dreaded disease from a care givers perspective. It’s a chance to express observations of behavioral patterns and some other changes that can occur as a result of the progression of this disease. And the second reason is to have a forum where I can share some of my feelings as we progress towards the inevitable end. I am not a doctor, nurse or therapist, just an ordinary guy reporting on what I see.

I welcome your thoughts and input. Please feel free to share your stories, and please feel free to share this article as you wish.

Greg

Hi all

Yup, I’m getting sick, but not from Corona Virus. I’m getting sick and tired.

I’m getting sick and tired of all of the nonsense that is happening with television channels and content providers. How dare they cancel “Gone With the Wind”. Seriously?!?

Ok, I get it, HBO is temporarily pulling Gone With the Wind. I quote from BBC News:

HBO Max said the 1939 film was “a product of its time” and depicted “ethnic and racial prejudices” that “were wrong then and are wrong today”.

It said the film would return to the platform at an unspecified date with a “discussion of its historical context”.

While this film is not one of my all time favorites, it is a film I’ve enjoyed watching from time to time. I saw the film for what it was and thats it, plain and simple. I don’t need to hear some muckety mucks discussing the historical context.

The next bit of news I heard along these lines is that A&E has pulled Live PD. The Paramount Network pulled Cops, Body Cam got yanked as well, and now I’ve heard that the kids show Paw Patrol is being yanked.

Where does it end? I can sympathize with folks who find programming to be offensive in some way, that’s fine, it’s their opinion. I take offense at some programming myself as well, and guess, I don’t watch it.

I would never in my right mind demand that certain programming which I deem offensive, be pulled off the airways. You know why? Because I respect the rights of the many others who enjoy watching. Who am I to dictate that just because I find this or that offensive it should be pulled.

Ever heard of #LivePDNation ? There are millions of people who love watching and interacting with this show, myself included. And we have to be punished in a way because people are out raged over the wrongful treatment and death of George Floyd?

I’ve struggled with remaining silent publicly over this tragedy. When the news first broke and the video aired, I was enraged. I hollered and yelled, shaking my fist in the air over the events that led to Mr. Floyd’s death at the hands of a cop.

I support the protests that broke out after this incident. I respect the right of all American’s to peacefully protest, it’s part of who and what we are. The riots though, that’s another story, and one that I take issue with.

I’ve lived through riots all through my life and never, not once, have I understood the logic behind wanton looting and destruction. What gives anyone the right to destroy buildings, private property and the like. Looting and stealing from people under the umbrella of protest.

To what end? To prove a point, to give expression to your message? What about the lives that have been ruined or destroyed. Oh wait, that doesn’t matter as long as your point of view has been heard.

As I said, I support the constitutional right of every American to protest, and in that vein, I offer the following:

Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.

The Constitution guarantees the right to protest in Amendment 1. It does not grant the right to Riot. Period.

Rahm Emanuel, President Obama’s chief of staff, was once quoted as saying: “Never let a crisis go to waste. You never want a serious crisis to go to waste. I mean, it’s an opportunity to do things that you think you could not do before.”

Rahm Emanuel wasn’t speaking about riots, and it’s not my intent here to talk about the politics of the time. I referenced that quote because this is just what happened in the aftermath of George Floyd. It was a crisis. A crisis of the trust between the police and the public. And according to Emanuel, never let a good crisis go to waste.

Words can and do have meanings. What you say today can be applied at some point in the future, even if used in a different context.

In closing, let me say a few things. I am a strong and ardent supporter of law enforcement. It is very true that there are bad cops out there, but there are truly good and decent law enforcement officers, and the good far out weigh the bad.

Are we, as a nation, long overdue for reform in the law enforcement community? Yes, we definitely are. Will rioting, with all of the hurt and devastation that goes along with it, help further this cause? Perhaps, but the injustices that have occurred as a result of the rioting will hurt rather than help this cause in the long run.

Is it right for broadcasting companies like A&E and others to pull content because it may upset some people? NO, it is not. As I said earlier, if a show is upsetting to you, don’t watch. Don’t infringe on my right to enjoy a type of programming.

When my kids were quite young, MTV hit the air. I enjoyed watching the music video’s, but wasn’t happy with the way some of the content was portrayed. I didn’t want my kids to watch. Did I protest? Kind of. I simply locked that channel out of my cable box.

It’s ok to protest, but please, don’t give in to the urge to cause chaos by inciting or participating in a riot.

And last, to the networks, don’t pull programming, add a disclaimer. This show might not appropriate for all viewers. Or something along those lines. Maybe HBO has it right with a discussion on the events of the day being portrayed in the movie.

Lemmings. COVID19 is here, and it it’s affecting so many people in so many places worldwide. I’m sure that everyone has heard of shortages in stores, people staying home, and so many other things too numerous to write about.

So I ask, is it time to panic? Is it time to act like lemmings and head for a proverbial cliff?

A Little Education

COVID19 woes. As markets around the world start to face plant, oil prices dropping, lock downs and businesses starting to fail, I started to think of those cute little lemmings. We’ve all heard about lemmings rushing to the cliffs to jump off in mass suicide. Let’s read a quote from Encyclopedia Britannica

“So why is the myth of mass lemming suicide so widely believed? For one,
it provides an irresistible metaphor for human behavior. Someone who
blindly follows a crowd—maybe even toward catastrophe—is called a
lemming. Over the past century, the myth has been invoked to express
modern anxieties about how individuality could be submerged and
destroyed by mass phenomena, such as political movements or consumer
culture.”

Caution

With all that is going on, it’s not time to panic. I see it as a wake up call. We are all aware of the need to take caution while going through our daily lives to stay safe. Don’t panic, this isn’t the end of the world.

We’ve all heard of preppers, and I’ve been told that I’m a prepper. I’m not really, I just like to know that I’ve stocked up on a few things over time. Simple every day things like water, coffee (a must in my house), toilet paper, canned goods, simple first aid gear. These are some of the things stashed away in various places in my home.

If things get to the point where basics are running short, My wife and I would be happy to pitch in and help those in need. There are many folks who are willing to do the same. I urge caution my friends, but don’t panic, don’t run off the cliff.

Remember when cool meant lack of warmth or moderately cold? Cool to the touch, or let it cool down before touching, phrases like this are still used today, but cool has come to mean many other things. Somewhere through the years, cool has also come to mean ‘in a calm and nonchalant manner’. Another definition might mean an item or situation is a good thing.

Definitions, while remaining true, also change and evolve with the times. Most recently, the word ‘Organic’. I remember a time when organic was loosely referencing something grown, plants vegetables, trees and so on. One definition of organic is ‘relating to or containing carbon compounds’.

In today’s world, organic has come to mean so many things. Organic sales, organic views, organic food. There was a time when organic meant natural, but in terms of food, natural and organic are not always synonymous.

Granular. Here’s another word that is evolving. A definition of granular might be, ‘consisting of or appearing to consist of granules’. The word granular is definitely evolving. A current use of this word might look something like this: ‘on a granular level, things aren’t what they appear to be.’

Evolution is about change and adaptation, and our use of words is evolving. Sometimes the evolution of vocabulary is a good thing, sometimes not. Sick used to mean affected by a physical or mental illness. According to the Urban Dictionary, sick has come to mean: crazy, cool, insane.

A few years ago I attended a meeting hosted by VP’s and Director’s. One individual, highly placed mind you, ended his presentation with these words: “All things being equal, at the end of the day, it is what it is.” The room erupted in applauds. I sat there, sort of stunned, and said to myself, Huh? It doesn’t matter the context of the presentation, he ended it by speaking and not saying anything.

I was traveling down a highway near my home. The speed limit is 35 mph going into a traffic circle. Coming out of the traffic circle, the speed limit continues to be 35 mph for a hundred yards and then increases to 55, and a few hundred yards further it increases again to a final speed limit of 65.

I came out of the traffic circle accelerating to 35 and was between speed limit signs. I got pulled over. I asked the officer why I was pulled over and he advised me that I was going slower than the surrounding traffic. A typical tell for someone who has been drinking.

I politely told the officer that the posted speed limit is 35 mph and that accelerating to 55 prior to the speed limit sign was in violation of the law. Still, he persisted in saying that I was going slower than the other traffic. I pointed out to him that there were two lanes of traffic going in the my direction and that common rules of the road dictate slower traffic using the right hand lane and that is where I was at the time of the traffic stop.

So we debated for a few minutes. I argued that law enforcement should enforce the posted speed limit rather than allowing others to start their acceleration to 55 and beyond. He saw my point of view and conceded that I would be liable to receive a ticket for accelerating through the posted limit.

He let me go without a ticket or even a warning, and I thanked him for that. But it led me to wonder, why post a “Speed Limit” if all you’re going to do is look the other way as people ignore the slower speed as they aim for the higher speed.