In The Beginning…

I started this blog well over a year ago, and I was recently reviewing all of the work that I’ve put into it, looking for “holes” and topics I hadn’t yet covered that could be helpful to you. I found a few things that need further research and potentially revisiting. Most importantly, I found that I started in the middle of my journey, skipping the part where we had a new family patient! 

Crazytown often starts well before any diagnosis at all! 

So, this two-part series will examine HOW people get their start in Crazytown, and how The Mayor is tasked with responsibilities—often unsolicited—months or even years before anyone is sick. 

I love being The Mayor. I really love it, feel like I was born for it, enjoy the intensity and plethora of tasks, and wouldn’t change a day of it.

But, in the beginning, I had absolutely no idea what I was signing up for. I agreed to the role completely sight unseen, with no clue how much time, effort and emotion The Job would require of me. 

When Absolutely Nothing Is Wrong

Growing up

I was the kid, my entire life, who always said I would take care of Mom and Pop when the time came. It wasn’t really something I ever considered in totality, but I knew that ultimately, when the time came, I would step up. It was part of the conversation when Sweet Husband and I discussed getting married, and it lingered in the back of my mind absolutely forever.

My parents were extremely healthy—strong Depression-era people—and I never really even thought it would ever change. In my mind, I watched them age gracefully and with dignity until they just didn’t wake up one day. I didn’t envision doctors, specialists, surgeries, cancers, cognitive decline, or anything else that eventually happened. I had the Hollywood version of old age.

Then, One Day…

Mom and Pop had been retired for a few years in Florida, and they came to visit. They sat us down at the kitchen table, and asked us if we’d be willing to move. Just like that. They wanted to know if we would be willing to buy a larger house that would have a dedicated area for them to start to “vacation” longer and longer with us, with an eye towards permanent residency in our home.

This was in the late 1990’s, and they were enjoying a rich and robust retirement, with few medical issues and no outward decline (no “new family patient” yet). Sweet Husband and I thought long and hard about it, then began the search for a house that would accommodate all seven of us. They helped us with the down payment, and within the year we had relocated, leaving the two bedrooms on the first floor empty for my parents to decorate for themselves.

Over Time

They careened back and forth between Florida, Arizona and our Las Vegas house through the years. Their two primary focuses in retirement were visiting their five children and 15 grandchildren, and traveling as much as possible. They had a great life, and this lasted for a few years, with minimal things going wrong medically, and they were able to build strong relationships with all of us. We took multiple family trips—all 27 of us—and they split the winter holidays among all five households. This was their Golden Years. 

Yeah…This Isn’t Really Normal

Most regular people aren’t the intense, long-range planners Pop was. In retrospect, they approached us after Pop’s first cancer (prostate) that they didn’t even tell any of us about at the time. This calm, relaxed and financially secure story isn’t normal for most of the Mayors who are doing The Job. The majority of the time, The Job is thrust upon us following some type of catastrophic accident or illness – especially with a new family patient. Many times, the older person is quite resistant to the idea of leaving their own house and moving in with you.

I don’t know what your origin story is, Boss, but I’m betting it wasn’t as calm and seamless as mine. 

Let’s address the natural progression of your election to Mayor, and maybe we can arm you with ideas and suggestions for what comes next.

So, You Notice Something Is Wrong…

Looking back at the progression of things, clearly Pop was jarred by the prostate cancer, and recognized his mortality for probably the first time. With Mom always in the forefront of his mind, he probably foresaw that his illnesses might mean that she would be left without him, and so he decided to create a life for her so that she could go on without him. The fact that, ultimately, he was 100% correct isn’t at all surprising to any of us who knew him—he was just that smart. 

Between 2001 and 2007—the years we owned the house but my parents lived elsewhere, not being our family patient—my parents just lived their life as they chose. It was glorious.

But little things started to crop up. 

While the cancer did not become a big issue during this time, Pop began to have other problems, mostly brought on by the heart atrial fibrillation, that became concerning to them.

Primary Symptoms

The atrial fibrillation didn’t concern me at all. Pop had absolutely zero symptoms from it, and suffered no discomfort whatsoever. The skin cancers that started to become a yearly occurrence didn’t concern me at all, either. 

The real symptom that brought my parents to Las Vegas was their overreliance on doctors. They believed whatever the doctor told them, because they were raised to respect and listen to those authority figures. It wasn’t a failing of my parents, per se, that they relied on the advice of doctors. I blame the doctors who, in my opinion, saw my parents’ insurance and financial situation, and decided to do some unneeded work on Pop. 

The final straw was when my parents were pushed and shoved into heart surgery to correct the atrial fibrillation. It had not been any problem for Pop, but they were convinced that he needed immediate surgery to do electric shock on the heart to correct that atrial fibrillation. They scared my parents with the probability of suffering a life-threatening stroke if the atrial fibrillation wasn’t corrected, citing what I now know to be inflated statistics. 

The scare tactics worked on my parents, and Pop had surgery with one day’s notice.

I didn’t have time to fly there.

I didn’t have time to stop it.

It was the beginning of Pop’s other problems.

And, no, it didn’t cure the atrial fibrillation. Big shock.

Pop became my new family patient.

Watch Carefully

So, at this point in my story, I didn’t realize that my parents’ decisions were starting to be clouded by the influence of others, and might not be in their best interest. I don’t think the doctor was trying to harm Pop at all; I just didn’t appreciate the strong-arm tactics and rush of the entire issue. 

I realized for the first time that my parents needed an outside person who could make decisions from a position of logic and education, not emotion and fear. 

It was time for me to step in. 

Where Exactly Are You?

We had catastrophic things happen, and we had slow-moving, difficult things happen. Fortunately, my parents were very forward-thinking, and we settled most of the really important things before any real problems cropped up. Before they were even the family patient.

The salient question is: Where are you in this process? 

If you are stepping in unexpectedly following a catastrophe, it will be more difficult—but just as important—that you follow the advice to come.

If you are just becoming familiar with your impending role of Mayor, it is easier and just as important that you follow the advice below. 

No matter which end of the spectrum you are starting on, the following pieces of the puzzle will make your entire journey smoother and less stressful. Some of the conversations are difficult, but ultimately worth your time and efforts. 

So whatever your circumstance is right this very minute, read this checklist, and make sure you are as prepared as humanly possible. 

Talk To Them NOW While You Can

So unless you are being brought into a medical situation where your parent is unconscious or comatose, you have the chance to have conversations. If you’re fortunate enough to be preparing in advance for eventualities, you are in an even better position. No matter what, The Job starts with these sometimes difficult conversations. Far before they become the family patient. So belly up to the bar, Boo Boo, and get these matters straightened out today:

Are you The Mayor yet?

My position of Mayor was never in question, but maybe you haven’t been “appointed” yet. Now is the time to step forward and accept the responsibilities and wonders of the job. It’s time for you to take a hard and long look at where your parents are in every aspect of their lives, and begin the extremely long process of familiarizing yourself with their situation. 

Talk to your relatives

after we all decided to get a new, bigger house, Pop had a family meeting with the five of his children, and he told them their long-range plans. It was surprising to my siblings, and it didn’t go as well as Pop had anticipated. Despite their reaction, Pop pressed on, telling them it was their decision. He tried to answer everyone’s questions and allay their fears. Ultimately, it worked out fine, but it wasn’t seamless. As much as you can, as far in advance as you can, talk to your relatives. Let them know your plans, and remind them that they are still important, and you need their help and support to make the plan work. 

Give them as much information as they can handle

In the beginning, my parents were willing participants in their medical care, but that didn’t last. Slowly, over time, doctors would address me directly, and frankly my parents spent many doctor and specialist appointments quiet and confused. After the visits, I would restate everything that had transpired in a way they would understand. It was still their health and wellbeing, so I needed them to be informed, but there was no need to stress or overburden them with medical details. By the end, they didn’t even ask. 

Simplify their life and affairs

Once ensconced in my house, I started the process of streamlining their affairs and responsibilities, so they could relax and enjoy themselves as much as possible. They were an integral part of our family, and spent tremendous time bonding with my children, but I tried to make sure they weren’t stressed over anything in the house. We didn’t share household repairs or problems with the kids with them, because they just didn’t need those burdens. 

The Really Hard Stuff…

In part two of this series, we will talk about the really difficult topics and how we handled them moving into full-time caregiver roles. Join us again next week for these important items!

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about a new family patient!

Hey, since you’re here! You may as well check out getting a second opinion, here, or if you’ve read that, check out more dementia problems, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.

Oh! And don’t forget to check out my video series by CLICKING HERE!!!

Resources

https://www.aplaceformom.com/caregiver-resources/articles/after-dementia-diagnosis

https://www.agingcare.com/articles/warning-signs-of-dementia-to-look-for-139753.htm

https://www.commonwisecare.com/i-think-my-mother-has-dementia-what-should-i-do/