My Journey

 Hi, I’m Nancy May from CareManity. This is a photo of my dad, Stuart, and my mom, Audrey, and this is where all the following began.

My caregiving journey started, pretty much without my knowing.

My parents, at one point, drove 1200 miles by back roads, from Florida to Connecticut, to attend my mom’s 55th high school reunion in Stamford, CT, and to visit my husband and me. She had been looking forward to this trip for quite some time.

 They had come to see us in Connecticut a number of times over the years since moving to Florida. However, on this trip, some strange things popped up. You see, my mom grew up close to where we lived and knew the roads and area like the back of her hand.   Yet, this time they got completely lost while only 20 miles away, requiring me to come and guide them the rest of the way.  Next, while staying with us, my husband mentioned that Mom had started asking him the same questions over and over again.

 All I could think was: No, this couldn’t be true.  He suggested I take her out with me for some “girl time together,” to see for myself.  While together and right on cue, things happened.  Her conversations would start with a long pause, then she said: “So Nanc (how she always referred to me) you know I grew up here.”  Then, “I lived not far from here as a young girl.”  and “My family’s from here too. Did you know that?”  

It seemed as though 40 years of banter and all the wonderful and wild family stories had dissolved into the fog.  This from the same Mom who had always been as sharp as a tack, and quite snarky at times too.

Delay and denial

While I was a bit concerned by Mom’s comments, I definitely wasn’t ready to admit things were not quite right.  Beyond this, their trip was great, and we all had a wonderful and memorable several days together including a train ride into and travels around New York City, and dinner with childhood friends.

Reality bites, again 

During my next visit to Florida, partly to check on mom and dad’s well-being, things got a bit wonkier. On this trip I noticed my mom was sleeping a lot.  I mean almost all day!  Dad was always concerned about mom’s well-being, but not particularly good at dealing with issues.  While aware that her behavior was a little off, he thought that letting her sleep would help bring her back to “normal.”

Dad was also afraid of what might happen next.

When I candidly discussed mom’s behavior, he admitted that he was extremely worried and didn’t know how to help her. So, he just let her sleep, and kept ignoring the signs that something wasn’t right with the love of his life.

Actually, it was worse than that. My Dad was never particularly good at anything domestic. Or at discussing life-threatening situations.  Since mom wasn’t cooking, he wasn’t eating much, and had lost a lot of weight.

Nancy to the rescue.  That’s what eldest daughters do.  Right?

While there, I quickly showed him how to shop, restock the fridge, and learn some basic cooking skills, you know: hotdogs, beans, Publix baked chicken, some sides and greens, and of course, Ice cream and Cheerios.  At least my fears that I might find them shriveled up from starvation – at least right away – were somewhat alleviated. 

Everything was restored and put back to normal, sort of.

Wait, we’re just getting started!

 One weekend I made my usual mom and dad call on Sunday afternoon.  However, on my first attempt that afternoon, this is the message I got: “We’re sorry, you have reached a number that has been disconnected or is no longer in service. If you feel you have reached this recording in error, please check the number, and try your call again. This is a recording.” 

 What??????  This can’t be!  I dialed a second and third time and got the same recording.  Then, I called my sister and asked her to call.  She got the same recording too.  

Next Step: Stop the Panic, and then Engage the Brain.

Thankfully my parents lived in a gated community, and I had the number to the front gatehouse.  “Frank, (who I knew) would you check on my folks to make sure they’re OK?”  Within a few but seemingly very long minutes, I learned they were fine and yes; the phone had been disconnected.  

A few quick calls and I had their phone service restored.

Next, I learned from Dad that he was having problems getting water out of the faucet that afternoon.  They had county supplied water and, you guessed it, it had been shut off, too.   That took a bit longer to fix but I got it restored the following morning. 

Now we have a calm panic.

Ever since they got married, my dad managed the family business and brought home the bacon. Mom managed everything else: the house, the household finances, and all the other things that kept us all alive. Pretty typical for many families back then.

However, somewhere along the line, things changed., Mom stopped paying household bills. She also forgot to make deposits.  I later found uncashed checks (a lot of them) behind her computer desk.  I later even found, and recovered, over $10,000 that had gone into the State’s “unclaimed funds” account. 

Are we broke Nanc? 

The fear of being broke really panicked my dad.  At some point, mom, convinced dad they were on the brink of financial ruin, and she brought in an antique appraiser to look at personal family items “for insurance purposes.”  Sadly, this unethical “antique appraiser,” who gained her trust, convinced them to sell several very valuable heirlooms for very little. They really did not need the cash, but that’s how predators work on the elderly: fear and trust. 

Later, in a “dad’s listening too much to mom” moment, he called with the sound of utter desperation in his voice.  “Mom says we’re broke. Is that true?”  No, I assured him, they were far from it.  But mom was breaking down, and I was not aware of the antique dealer’s damage until my next visit to Florida. 

The shift in mom’s health and mental capabilities helped us both decide and agree on what to do next.  After all, I wanted to include dad in big decisions, to preserve his dignity, and respect as well.  But first. . .

Taking the reins required saying . . .Whoa!

Everyone, Mom, Dad, their legal advisors, finally admitted that it was time for me to take the family lead.   I had signed on as their Durable Power of Attorney, Trustee, and Executor a long time ago, but until now, my work had been in keeping up with the basic documentation only.  Now I needed to suit-up and manage their total welfare.

Overnight, I stepped in and paid all bills, and started to manage their household and legal affairs, cleaned up their finances, and began to unravel the mess that had built up over the past few years. 

All this was organized and done as I kept Dad in the loop from nine states and 1200 miles away.  This, while keeping my own business running and clients happy. 

Time for a breather. 

Thankfully, my parents did a lot of preplanning before any of mom’s issues appeared.  I’d always said that they’d been preparing me for this role since I was five.  (You can read about this in my Mom & Dad Inc. post). 

A blessing in disguise, sort of!

 Growing up, my folks always made sure I knew who to call in case of any emergency. 

 After they moved to Florida, I started making visits once every two years or so, then every year.  During each visit, my dad and I would review the business cards for the important people I needed to know.  Then, he’d review important documents and his latest family history notes.  He also gave me introductions to local friends and new neighbors, and of course copies of their contact points.  A visit wouldn’t be complete without checking in on the bank safe deposit box, saying hello their friendly bank branch manager, their accountant, and financial advisor.

These types of visits and conversations, although not always fun, were a blessing in disguise: I had a good starting point. 

While I pretty much knew where everything was and who was who, I realized, once taking over, that I didn’t know the extent of the poor advice they’d received over the more recent years.

Next Steps 

After right-siding bills, banking issues, taxes and more (you know, the little things) I moved to confirm my suspicions about their long-time, trusted financial advisor.  Long story, short my gut was correct that he was a “benefit to broker” vs. “benefit to client” advisor.

He (Ron) did well year-after-year while they lost money to fees, bad investment decisions, and promises of saving my sister and I from big tax burdens after their death.  Dad’s trust turned into a leaky faucet syndrome where the money they were relying on to live well until their final days was quickly going down the drain.

There was a lot of repair work to do.

This meant turning the faucet off and then making sure there was a secure base from which to start making changes. The next move was to get ALL their financial affairs organized.  

Their financial advisor recommended that they spend it all down. Mom and dad did enjoy traveling and cruising a lot, until it became physically and mentally impossible for mom.  I’m glad they got to whoop it up, but I wonder if Ron ever considered what would they be left with for their own care during in their final years?

You’re Fired!

Then I rolled into full action by firing everyone who’d been diligently working to drain my parents’ financial nest egg – after all, they weren’t using it to travel and whoop it up at this point.  So… 

1. I fired their financial advisor: Ron, the man, working for a big named company, who my dad trusted, and, as I soon discovered, had several confirmed FINRA complaints against him. 
   Together, with the support of my own financial advisor, it took nearly three years to unravel from the unnecessary, complex, and money-losing schemes and instruments he had set up.
   The FINRA discussion I’ll leave for another lesson. You should bone up on this agency and processes in case you, or your folks, ever end up abused by a financial advisor.  Never trust a financial supervisor who says “if you win, it’s not an admission of guilt!”  That’s not the point!
   
   
2. I tried firing their attorney: who I learned was in cahoots with the financial advisor.  Unfortunately, he died before I could have the pleasure of firing him. I did find another one who has served them and our family well since then.
   
   
3. I fired their accountant: who coordinated with their financial advisor and attorney also protecting everyone’s interest except my parents!  I hired a new CPA, my own.  I’d known her for years and she was well-practiced in business and trusts/estates. Oh, by-the-way, she charged half of what the other accountant charged my parents, in Florida! In addition, she provided additional balance to key decisions that I’d need to make going forward.
   
   
4. I fired their doctors: several of them. Then had to find new doctors who would accept Medicare and their supplemental insurance and be responsive when needed.  Their physician’s office had stopped accepting their insurance and would only permit them to see a nurse aide who I referred to as “the happy idiot” and who like to discuss Dr. Seuss during each medical visit.  

But wait… there’s more!

Best laid plans… take a dive.

Probably like your parents, mine never wanted to be a burden (their term, not mine) to my sister and me.  They made plans to live well, with a little support, so we wouldn’t have to worry about them.

Their careful plans (and a deposit) included a move to an assisted living facility when their home became too much to manage themselves. Supporting their decision, I went along with this, even though it would take a while for an apartment to become “available.”   It took four years to sell their home, and miraculously, they received a buyer’s offer just two months before their new care home move-in date. 

Honestly, mom and dad were quite excited to move into a new place, right next to where their home and friends were located. 

Life Goes Back to Normal, for a short while.

Once settled in their new care facility/home, we all thought life would go back to normal. We could breathe normally, for a while.  However, the “guaranteed” special move-in deal, that Dad was so proud negotiating, started with a $1,500 deposit so they wouldn’t lose their place in line.  (Note:  this fear of missing out sales tactic is more common than you might guess).  Once in, and two months later, their monthly costs increased to $3,750, and then began to creep up from there. 

Soon an extra $600 was added, then another flat increase due to “unforeseen business expenses.” These “unforeseen” operating charges were bumped up again, six months later.  Even though they’d been told that increases rarely happened.  When they did, they were told it would only occur once a year.  Ha!

Later on, I received calls from the facility, complaining that Dad was peeing between the cars in the parking lot because he couldn’t make it to the bathroom after being out on long driving adventures with mom. 

Shortly after that, a special aide had to be hired to drive Dad to doctor appointments because his driving skills had become somewhat dangerous, and the facility transportation bus wouldn’t take him to his specific doctor’s location.  Even though they promised this service would be available, when needed.

Then, I received charges for more surprise tests and medical charges (which were never shared or given to us), that had been ordered by the facility head nurse.

With each visit, and in-between, I arranged group facility management discussions about the quality of care being provided and set plans to improve each time. Finally, during one visit the head nurse and the director told me that my parents weren’t their problem! Really?? What type of care were we paying for?

During this time, Mom complained of sight problems, had several falls with injuries (eight stitches in her head, bruises, cracked ribs), and needed more care. After some of these small incidents, this facility said Mom needed more oversight (24-hour care) and that we had to use their approved medical providers and caregivers. Within 18 months, their special care facility rate ballooned from $3,750, to $5,700, then $10,00 and rose to well over $30,000 per month (this came to over $360,000 per year, not including other expenses!) They even wanted to place her in their lockdown memory care unit. This would mean breaking mom and dad apart, and knowing them, doing so would have been a short-term death sentence for both.

The big talk.

It was time for a serious one-on-one meeting with Dad about their financial strength and how we could work together to make sure they wouldn’t outlive their hard-earned life savings, and mine for that matter! 

Dad always trusted our tight and honest heart-to-heart conversations, but this time, he almost went into shock as I explained the latest bills and reviewed every last detail, to the penny. 

As tough as that discussion was, I worked incredibly hard to reassure him I had everything under control (sort of), providing he was willing to support my decisions. Thankfully, he was.  So our dad-daughter team flew into action together to find a new facility and get the hell out of this one. 

As I left, my dad gave me a huge bear hug, reassured me that I could get them out of this mess.  I wish that hug had never ended. He then turned around and walked back into that facility as I drove off to the airport.

Watching him walk away from me broke my heart. But that bit of release made me more determined to move fast to right side their life – and mine too.  I’m not one who easily cries, but that day I bawled like a baby on that lonely drive back to Tampa Airport. 

Moving Forward.

Once home, and over the next three weeks, I researched, interviewed, and visited over 40 care facilities in Florida, and Connecticut. I returned to Florida and took my dad in tow on numerous facility visits. Finally, a close family friend came up with our best option: an independent living facility only five miles away from where they were.  It was warm and inviting and at a negotiated price that was realistic. 

Moving Forward.

Most care facilities have contract clauses requiring advance notice, before moving out. Some even have a timeframe after death. Theirs was 30 days. After giving our “move out” notice, the facility’s General Manager and Head Nurse (I referred to as Nurse Ratchet) tried to put the fear of God in me stating it was a horrible idea to move and that most frail and elderly people, like my parents, died within six months of such a move. What a joke. I scoffed at this and made damn sure we’d defy their “statistics.”  I swear my parents would have died if they stayed six more months more at that place. 

Here’s a photo of them at their old care facility, and another after only three months in their new care facility home.

Finally, a light at the end of the tunnel.

Our move was truly a life-saving act. After getting settled in their new home, Dad gained a new bounce in his step. The color started to come back into Mom’s face. Dad lorded it over their dining table and made sure to protect Mom from anyone intruding on her and their space. 

Mom started smiling again and regained 35 of the 55 pounds she’d lost from being denied meals in the last facility because she was too weak to walk down to the dining room.  They had refused to send meals to her room – even though we were billed extra to have them delivered.

 This move gave me some relief and time to focus on how to rebuild their financial health and find the right 24-hour team of aides to provide care and oversight.   Over time I learned the optimal number of aides to have on their care team. We needed six to eight to make everything work well for them and our aide’s personal lives too.  The size of our small team was reaffirmed as ideal by a friend who served as president of our state Agency on Aging organization.

This became, for me, a new venture, which I called “Mom and Dad, Inc.”

OMG. We’re not done YET?

Within two years, however, facility costs started escalating, although not as quickly as before. Worse, the quality of this facility’s services also declined. Mom improved, but Dad declined due to poor nutritional options for someone with bad teeth.  Few can thrive on just pizza, oatmeal, and ice cream alone. Good nutrition really is a key to good physical and mental health.

So, with a sigh, I decided to move them, yet again.  They had survived round one, why not go for round two?  Hopefully I wouldn’t kill them this time either!

In my search, I got the right suggestion from a worker at a 55+ residential apartment building that clued me in on what to do next. This complex was new and beautiful but 100% booked.  There was no room at the inn and there wouldn’t be for a long time. He was impressed with our “revival” story and said, “why don’t you just rent the right house with a more comfortable home-like setting, on Zillow?”

Brilliant! 

So, the next goal was to find an actual house to rent that was suitable to move them in to.  I already had a decent care team, so my search was mostly managed from my home in Connecticut. Tight communication with a realtor and my lead aide ensured that we’d find a workable alternative. The key here was to make sure that their bathroom was safe for everyone to maneuver, and that we had the right care equipment to reduce physical hazards, potential falls, and make it easier for our aides to do their job well.

If you want a checklist of equipment you will need to make sure your own mom and dad can live well in their own home, or yours (click here) 

 On the road again. Catching a second breath!

 Moving into a house that Mom and Dad could call home made a huge difference for everyone: me, my sister, and our families. But all good things end. Two years in, that rental house went up for sale as the local housing market started to heat up.  Consulting my financial advisors, I decided to put a bid on that house.

Well, it didn’t pass inspection to my satisfaction, and the owner refused to negotiate.  It was at this point that I gave the rental agent and owner our required 60 day leave notice.

Now what? Round Four! 

They say that which doesn’t kill you, make you stronger.  I hoped the same was true for mom, dad, and me!

Next, I kicked into high gear, went to Florida, my sister flew in to help, and we set a 10-day plan to divide and conquer a search for a house to finally call home again.   With the support of a few real estate agents, we toured and assessed over 40 homes and brought our selections down to a few places that looked promising.  After all, it had to be a perfect place for them to live for the rest of the lives together, and for our aides to be able to comfortably care for them too!

Love at first sight.

I knew we had the right home after asking our lead aide, Millie, to give me her opinion. Together, we walked the house, toured every room, and with a big grin spread across her face as she leaned over and hugged the kitchen island top. That cemented the deal for us, and the realtor too. 

A real home at last! 

After a little negotiation and passing inspection, my parents had a place to finally call home again. One where they’d never have to leave, EVER again! After a final review with our advisors, we knew this was a wise investment.  That house, within days, of moving them in, became a home. 

 Dad’s face lit up when we pulled into the driveway. He couldn’t believe that they were back in a house that they could call “their own home” again. Mom settled in beautifully, even with slight dementia, and never missed a beat. Ever!

 This is where Millie and our team of aides brought more love, light, music, and joy to my parents than my sister and I could have done on our own. 

 Christmases, Valentine Days, anniversaries, birthday celebrations, a hurricane or two, welcoming of new babies visiting, a few small dogs, and the challenges of Covid made that house a home for every one of us!  Even Millie, and our other team aides called this house their second home. It always felt like I was coming home too, with each visit South.   Thankfully!

Yes, we cycled through a good number of aides over the years, and in this home too, but with caregivers that’s something you’ll need to get used to.  (Note: You will adjust, but I can pretty much guarantee you won’t become entirely comfortable asking an aide to leave your home.  You can find tips and resources about this too … Link….).

It ain’t over until it’s over… and then some.

Here’s How it All Added Up ($$$): By this time, I still hadn’t fully recovered all the losses that their former financial advisor had created for my folks.  This meant the need to continually count pennies, and dollars and manage finances tightly.

That final move saved us an additional $18,000 a year. But it was important to my sister, my lead aide Millie, our entire aide team, and me, that we’d never have to move my parents again.

Here’s how it all added up: Over $250,000/year SAVED!

I’d been working with our team to make sure that finances were managed well and that we could provide the best care and living environment for my folks.  It was important that each aide was also treated with respect, gratitude, and kindness, even when we had to let someone go.

I’d been working with our team to make sure that finances were managed well and that we could provide the best care and living environment for my folks.  It was important that each aide was also treated with respect, gratitude, and kindness, even when we had to let someone go.

It took time, adjustment, and tweaks along the way, and with that, our final total care came to just over $250,000.  Yes, there were different expenses, but these were expected, versus the costs of getting nickel-and-dimed, and receiving poor care in that original assisted living facility. 

Nurse Ratchet was a distant memory. . .Thank heavens! I won’t name the place, but it was one of the largest and most respected in Spring Hill, Florida.

It took a while, and together as a family, our aides, and a network of local and long-distant friends and other professionals, were able to extend my folk’s years of joy and quality of life by more than 10 years. As I said before, I believe we saved them from an early death.  Take a look at the earlier before and after photos to see for yourself.  

By the way, photos are a great way to gauge the positive or negative impact that a facility or aides are having on your parents.  I highly recommend keeping a photo log.

The final trifecta.

Love, commitment to care, and business. . . family business! This was what I call a trifecta win for my folks – and our families. 

Over the course of my life, dad and mom taught me a lot about business, especially knowing how, when, and whom to connect with and when and how to ask for help when needed. 

One day my dad asked how I managed to meet so many interesting and good people over the years. My response “I watched and learned from you.”  He teared up that day. I did too.

It’s not personal, it’s just business.  Don’t believe it!

I’m fortunate that their early guidance, along with what skills I acquired working with tough corporate clients, public company directors, and CEOs, gave me what I needed to do well in caring for them. Mom and dad were fortunate too.

I have since been privileged enough to pass many additional lessons on to friends, colleagues, and others in need–like you.

Caring for an aging parent, spouse, or other loved one has its bumps… many bumps along the winding road you’ll travel.  Your bumps do not have to be as difficult as some I faced and overcame. It did get a lot easier for me as I went along. Like you, I’m still on the journey.

Lessons learned, inside secrets and research collected. . .

As I’ve gone along my journey, I acquired an incredible team that helps me research, collect inside “secrets,” knowledge, and resources aimed towards making your journey:

• Less stressful
• Less costly
• More joyful and
• Personal in every way.

So that you can live well, while doing good for those you love.  

That you can do so without you, or your parents, becoming an unfortunate statistic.  

Where you can find some joy, even when it feels like everything is working against you.

So you can avoid becoming emotionally, physically, or financially broken while caring for those you love. 

Yes, there is a better way!  Let me show you how.

P.S.  There’s a ton of information, tools, and resources here to help you more easily navigate life, career, and your family caregiving.  From DIY resources and programs, to tools, discussion groups, and one-on-one custom support.  

Take a moment to look through our site for more.  You can also reach out to me directly if you can’t find what you want and need.