My Personal Experience With an Aging Parent and Alzheimer’s

By Attorney, Philip Kavesh

At the time that my Dad passed away suddenly from a heart attack, about thirteen years ago, my parents had already moved their long-time residence in South Jersey to South Florida.  They loved it there, enjoying a small condo that overlooked a river with boats passing by all day long and that was within walking distance to stores, a beautiful beach and Denny’s (with a $1.99 breakfast special!).  When my Dad passed, my Mom was 83 years old and in completely good health.  She didn’t need to take any medications and she did all of her cooking, shopping, and cleaning pretty much on her own.  She still drove her car and paid all of the household bills, while very meticulously keeping her checkbook in order.  Everything appeared fine.

Then a Few Things Began to Seem Wrong

The summer after my father passed away, Mom took a several month trip to visit my sister in London and my brother in Munich.  They engaged her time and attention in many of her favorite activities, like visiting museums and parks and attending theater shows. She seemed to be totally fine to them.  She was high-spirited and had few daily tasks to handle on her own.  It was a fun vacation for her, and being caught up in daily planned activities she was able to “seem normal” to my brother and sister.

However, when Mom returned I went to visit her in Florida for a week, and spent entire days with her in her home environment, I began to notice that she was experiencing some difficulties in doing simple things.  She had trouble using appliances and her TV.  She seemed so overwhelmed with going through the mail, taking almost all day to sift through and try to read and understand all of the mail and bills.  She seemed confused about which mail items were important and which were bills that had to be paid. Initially, I thought she might have expanded the task in order to fill up her time and distract herself from the loss of Dad.  And when I left, she reassured me that she felt competent enough to pay her bills and take care of her other household chores, that she was okay.  She was very persuasive - - and that’s what I wanted to believe - - so I agreed to return to California and leave her on her own.

After I returned home, whenever we spoke on the phone I noticed other little unusual items of her behavior.  She would complain to me about how she was so frustrated because she was unable to do the things that she loved to do.  Things like go for a walk outside or go to the pool for a swim.  I asked her why she wasn’t able to do those things and she told me because “all of her time was being taken up with all this darn paperwork and bills!”  At that point, I started to suspect that something was, in fact, very wrong.  So, I went to Florida to pick her up and bring her back to California with me. I got her to agree to stay at least through the summer months.  (The South Florida summer is way too hot - - she wouldn’t even be able to go out and sit on her balcony, a favorite pastime of hers each afternoon - - so it was easy to convince her.)

Before we left, I helped her clean up her condo.  That alerted me to a few more troubling signs. My neat-freak Mom’s place wasn’t perfectly tidy.  Dirty clothes were piled up, I found unopened mail (enough to fill several large-sized garbage bags!), newspapers and magazines covering every table and flat surface, and I even found some unpaid bills stuffed in drawers!  Plus, she had stashed cash and keys in some very unusual places!

The More I Spent Time With Her
the More I Noticed Other Odd Behaviors

When Mom got settled into her California place, nearby me, I was able to take over her bill paying tasks to relieve her of that stress and hassle.  However, I noticed that even without the burden of the paperwork, she started to exhibit odd behaviors.  For example, she would sit on the balcony and watch people walk by or play with their kids and dogs (or she would seemingly stare out into space), all day long.  She would skip entire meals, even though there was plenty of food in the refrigerator and I marked them “breakfast”, “lunch”, and “dinner” and described what was inside.  There was even a time when she left her apartment to go for a walk and she got so confused that she was unable to find her way back.  Thankfully, she had a cell phone on her and was able to press number 1, which was programmed to call me, and I was able to direct her home safely!

I then began to visit with her daily.  I would often take her out to dinner just to make sure that she was eating and getting out of her apartment.  After that day she got lost, she refrained from venturing outside of her apartment, even though her complex was self-contained with lots of beautiful places to walk and sit.  She stacked up newspapers, rather than play her favorite Sudoku puzzle every day, as she had for years.  She would constantly complain about “losing” her jewelry and cash, which she in fact had hidden from herself!  She became increasingly paranoid and fearful, and uncharacteristically upset or angry very easily.  She refused to let the maid or maintenance person or caretaker I hired into her apartment, accusing them of stealing.  She wouldn’t go to the pool and swim, because she was either afraid of being there by herself or afraid of others who were there.  And, there were some new, bizarre behaviors that she started to exhibit.  She told me some wild stories, like seeing people hiding in the bushes below her balcony while they underwent a secret surgery to have their legs shortened!  By now, I should have realized she needed professional help.  Then came. . .

The Turning Point

I booked a trip for Mom to visit her only surviving sister who lived in Tucson, hoping the change of scenery and time spent with her closest living relative would help snap her out of her odd mindset.  I thought it was best if Mom went on her own, without me, to spend a week or two with her sister, supervised by my cousin.  I packed Mom’s clothing and other necessities into a suitcase, checked in the suitcase at the airport, took her all the way to the boarding gate for the short plane ride, and my cousin met her at the arrival gate as soon as she got off the plane.

All seemed to be going fine.  Within minutes, my cousin called me and, in a hysterical tone of voice, asked if I had Mom’s carry-on bag because Mom was having a panic attack!  I told my cousin that I did not have the bag and that Mom had it with her when I left her to board the plane.  What we both did not realize was that my Mom had packed all of her heirloom jewelry and other personal valuables into the carry-on bag!  This set off quite a stressful “fire drill” between my cousin and me, with both of us scouring the airports and their lost and found departments to try and track down her carry-on bag.  (Thankfully, after a week of inquiries and back-and-forth, I was able to locate her bag and all of the valuables were safely returned!)

The lost carry-on bag incident was just the start of Mom’s bizarre trip to Tucson. My cousin also observed some odd behaviors exhibited by my Mom, like leaving the bed repeatedly during the night and wandering around aimlessly.  I finally recognized that Mom needed to undergo a thorough medical exam to determine if there was something else going on other than just general aging.  I was lucky enough to receive a referral to UCLA Health Geriatric Medical Group in Westwood.  After a number of tests, the doctors determined that my Mom had advanced dementia, coupled with Alzheimer’s disease.  My siblings and I were a bit taken aback to hear this, because my mother was always very physically fit, very organized and on top of things.  None of us knew what dementia looked like.  If we had, we would have responded to the many warning signs earlier.

A Difficult and Costly Decision
But the Best I Ever Made

Given Mom’s dementia diagnosis, the doctor and I decided that she required 24-hour care.  I consulted with a Geriatric Care Manager, referred by UCLA, who works with families to find the proper housing and level of care for loved ones.  She helped make the process painless, well almost.

While searching for a care facility for my Mom, I am not going to lie, I was pretty shocked by their greatly different quality of care - - and cost. The “base” fees were about what I had expected, but when all of the “extras” were added in….WOW!  Given my background in estate planning, I was well aware that it was expensive for any kind of senior living or nursing care, but I was not quite prepared for how expensive it turned out to be.  Thankfully, with the help of my Mom’s financial advisor from Pence Wealth Management and some Long-Term Care Insurance that we had in place for Mom, we were able to cover all these costs and place Mom in a great facility near me, without having to eat much into her investment principal (a big concern because her sister was already 99!).

Then the day came to move Mom into the chosen facility. This is the stuff that not a lot of people talk about.  How difficult it is to see your parents get older and age, and then have to deal with it.  Even though, in the back of my mind, I knew that this day would come, it still did not quite prepare me for the reality when it arrived. “Putting Mom into a facility” was something I never wanted to do, but she clearly needed 24-hour care that none of her children were in a position to provide. I will never forget pulling out the checkbook on the day she was admitted to write that first month’s payment.  My writing hand was shaking so badly that I had to use my other hand to hold it so I could sign the check!  I was filled with a mix of emotions, ranging from guilt and anxiety, to uncertainty and fear.

But, I have to say, it turned out to be one of the best decisions I have ever made.

Mom Is Fine Now

There may not yet be a cure for dementia or Alzheimer’s.  However, with the proper care, it can be significantly slowed down.  Between the medications prescribed to my Mom and the dementia care program she attends daily, my Mom’s quality of life, and time with us, has most certainly been extended.  Mom’s memory has continued to decline to the point she rarely remembers who I am when I visit, but she is always happy to see me. She raves about her new residence (in fact, she relishes giving her visitors a full tour, as if it really were her own house!).  And she never worries about, or even asks about money or her jewelry anymore.  I’ve been able to easily and fully take over her affairs as the Successor Trustee of her Living Trust plan.

The beautiful thing is that the facility, Belmont Village, keeps Mom in the NOW.  She doesn’t have to be concerned with or saddened by her lack of memory of the past.  She’s constantly moving around and interacting with others.  Mom enjoys all sorts of activities, from dancing, singing, movie night, jigsaw puzzles, and dinners with her friends, to walks around the grounds.  Simple things in life give her pleasure, including watching the birds in the trees outside her window and the rabbits hopping in and out of the bushes surrounding her place, and in particular her after-dinner ice cream treat!  Mom also enjoys our regular outings, when I drive her around the Palos Verdes peninsula.  She loves the scenic views and we often stop to take a short walk or frequent a local café for a coffee and a sweet treat (or two!).

Every day for Mom is a brand new lovely experience (although it may appear to others as the same as the day before).  She’s healthy and happy. Who could ask for more at her age? On September 9, Mom will celebrate her 97th Birthday!

Takeaways From My Experience
That May Help You or a Loved One

If you or your parent are over age 70, you’ll definitely want to read on.

First, I've learned from various studies that, although dementia or Alzheimer’s may not be totally preventable, their onset may be significantly slowed down.  Amazingly, my Mom’s condition did not appear until into her 90’s!  That’s because, in great part, she maintained a number of healthy habits throughout most of her life:

• Healthy body weight (she was very lean)
• Avoided drinking alcohol (almost never)
• Never smoked
• Exercise (she has done stretches every day that I can't even do!)
• Plenty of rest and sleep (regularly sleeps 8 hours each night and gets in an afternoon nap)
• Eating mostly fruits and vegetables, little red meat
• Engaging in mind challenging activity, like her daily Sudoku puzzle
• Maintaining good hearing and vision (after her cataract surgery and lens replacement, she sees better than me!)

So, careful living (and I suppose good genes and karma, too) can pay off!

My second takeaway is the need to be aware of the early signs of not only memory loss but erratic behavior which could be symptoms of dementia or Alzheimer’s disease.  (Check out this article, “10 Early Signs and Symptoms of Alzheimer's” from the Alzheimer’s Foundation.) Don’t assume a person is okay just because they seem that way during short visits or zoom calls.  Take enough time to evaluate the person around the clock and fully observe their condition.  The sooner that you can identify the scope of any problem and come up with a care plan that makes sense for your loved one and your family, the better. 

Third, realize in advance that the care or housing (or both) is expensive and plan for it.  There are options for Long-Term Care Insurance and other financial planning and saving strategies that you can start to put in place to help off-set some of the costs down the line.  In our seminars we talk all the time about how it’s not a matter of “if” you’re ever (or your parent is) going to be disabled or too ill to take care of yourself.  It’s a matter of when. I’ve seen the statistics that, once you’re over age 70, there’s better than a 70% chance you will require some form of long-term care, potentially for many years.

Fourth, there are also some estate planning actions you can take early, like being named as immediate agent for your parent under a Power of Attorney and as Co-Trustee under his or her Living Trust.  And, when the point of incapacity is reached, quickly transition in as sole Successor Trustee with two doctor letters.  Plus, do Medicaid benefits planning to help cover the cost of long-term nursing care.  All of these things are why we stress the importance of a well-built and properly maintained Living Trust-centered estate plan.

Last, but not least, I know that people have differences of opinion about placing an elderly loved one into a care facility.  I certainly respect everyone’s individual stance on this and what feels best for their own family.  But I will say that having a Geriatric Care Manager who was able to meet with me, understand our family’s budget and evaluate my Mom’s needs before any decision was made was truly a blessing.  Not everyone is in a position to take on the care of a loved one and to do so in a way that may give that loved one the time, personal and medical attention, and memory care that they really need.  Every time I visit with my Mom, I am reminded of how happy and reconfirm that we made the right decision for her and the quality of her life.