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The (Best) Toughest Decision I Ever Had to Make

| Aug 31, 2020 | Alzheimer's, Assisted Living, Dementia, Estate Planning, Financial Planning, Long-Term Care Insurance |

By Philip J. Kavesh

At the time that my Dad passed away suddenly from a heart attack, about eleven years ago, my parents had already moved their long-time residency from South Jersey to South Florida.  They enjoyed a small condo near Miami Beach that overlooked a river with boats passing by their balcony all day long, which was within walking distance to stores and a beautiful beach.  A wonderful, well-deserved retirement place.

My Mom was 85 years old when my Dad passed away and was in perfectly good health.  She didn’t take any medications and was physically active, doing all of the cooking, shopping, and cleaning pretty much on her own, as she had always done.  She still drove her car, paid all of the household bills, and kept her checkbook meticulously balanced to the penny!

But Something Seemed to Be Wrong

When Dad passed away, Mom was understandably emotionally distraught.  His death was very sudden and unexpected.  My parents had been married for 58 years, were best friends and spent most all of their days together.  I, my brothers and my sister, all of whom lived far away, were concerned about Mom living alone.  So, a few months later, we arranged for Mom to visit my sister in London and my brother in Munich.  When there, “on holiday”, she seemed to be totally fine.  She was high-spirited and appeared happy and competent.

However, when I went to visit Mom in Florida about 4 months later, I began to notice that she was experiencing some difficulties in doing simple things.  She seemed so overwhelmed with just going through the mail, spending almost all day sifting through it and trying to read and understand every single piece.  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 daily time and avoid thinking about the loss of Dad.  I sat with her and gave her a hand, but she insisted on writing all the checks on her own, and when I left, she seemed all right.

After I returned home, I called her several days a week on the phone, and she would complain to me about how she was so frustrated because she was unable to do the things she loved to do.  Things like go for a walk outside or go out 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 more than suspect that something was, in fact, wrong.  So, I asked her to come out to California for the summer.  She stubbornly refused at first, but when she realized the South Florida summer is way too hot – – and she couldn’t go out onto her balcony, her favorite pastime each afternoon – – she was convinced to come.

When I went to Florida to pick Mom up, I helped her clean up her condo.  That alone was a troubling sign, that my neat-freak Mom hadn’t kept her place perfectly tidy.  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 into drawers!

Fortunately, once Mom came with me to California, I was able to take over some of her bill paying tasks and relieve her of that stress and time-consuming 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 (or seemingly stare out into space) for hours a day.  There was a time when she left to go for a walk and she got so confused she was unable to find her way back.  Thankfully, she had a cell phone on her and was able to contact me and return home safely!  However, this became a longer-term problem because Mom refused to go on a walk with any caretaker I then hired to be with her while I was working – – she often refused to even let them in!

More and More Signs

After a while, Mom steadfastly proclaimed she could live independently and demanded to return to Florida by herself.  I agreed, but arranged for her to visit my sister again in London first.  My sister noticed some more odd behaviors of Mom, which as her son, I was not privy to.  My sister noticed that Mom would often wear the same used, dirty clothing.  Mom also became extremely forgetful, including the names of other close relatives.  My siblings and I had always known Mom as a vibrant, sharp, competent person and dismissed these behaviors as her just “getting older”.  But, we did all agree on one thing – – it was best that she not go back and live alone anymore in Florida.  But where would be best?

My family had lengthy, soul-searching discussions.  We initially considered her moving to London to live with my sister, her only daughter. Mom had repeatedly stated for years that she would prefer to live with the only other woman in our family, whom she felt closest to.  However, moving Mom to London with my sister would have required my sister to get a larger home.  Another major issue was that the health care system in England would not accept Mom’s Medicare or private insurance coverages.   For similar reasons, we ruled out my Mom going to live with my brother in Germany.  We then considered our other brother who lives in Chicago, but he could not accommodate her needs either.  Plus, all three of my siblings live in very cold climates during several months out of the year, which clearly made Mom moving permanently to sunny California the best option.

Things Get More “Peculiar”

In order to persuade Mom to agree to stay in California, I leased her an apartment overlooking the Redondo Beach marina and the ocean, similar to her Florida condo.  Even the size and layout were about the same as her Florida condo.  In an effort to make her feel more at home and quickly adapt to her new space, we even decorated it with furniture like that in her Florida home.  She could feel she was living independently, but I was close by just in case.  And, Mom agreed to give me Power of Attorney, so that I could take over her financial affairs and relieve her entirely of all of the hassle of managing her mail, other paperwork, and paying bills.

I would visit with her daily and, during this time, I noticed that she was losing weight even though she had a lot of food sitting in her refrigerator.  She had been skipping meals and almost stopped eating (except for a cinnamon bun and 4 cups of black coffee in the morning!).  I would often take her to dinner just to make sure that she was eating and getting out.  Like before, she would sit on the balcony all day and watch people and their pets come and go. She refrained from venturing outside of her apartment, even though her complex was self-contained.  She stacked up newspapers, without playing the Sudoku puzzle daily, as she had for years.  Her temperament more frequently became paranoid and angry.  She would complain about “losing” her jewelry and cash just about every day, when she in fact had hidden it from herself!  She was reluctant to let the maid or maintenance person into her apartment, accusing them of stealing.

And, there were some new alarming behaviors that she started to exhibit.  She told me and my siblings weird stories, like seeing people hiding in the bushes below her balcony where they underwent a secret surgery to have their legs shortened!

The Turning Point

I decided to book a two-day trip for Mom to visit her only surviving sister, who lived in Tucson, hoping the change of scenery and time spent with her closest relative would help her snap out of her odd mindset.  I packed her clothing and other necessities into a suitcase, checked in the suitcase at the airport, took her and her carry-on bag to the gate to board the plane for the short ride, and my cousin met her at the airport when she got off the plane.  My cousin immediately called me in a panic and asked if I had Mom’s carry-on bag because Mom did not have it with her and was frantic and crying.  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 created quite a stressful few days for my cousin and me, as both of us scoured the airports and their lost and founds to try and track down her carry-on bag.  (Thankfully, after about a month of inquiries and back-and-forth, I was able to locate her bag with LAX security and, remarkably, all of the valuables were safely returned!)

My siblings and I finally recognized that Mom needed to undergo a medical exam to determine if there was something else going on than just general aging.  We were 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 and only started to exhibit dementia symptoms at around age 91!   All of us had been in denial.  It was now clear Mom was incapable of handling her normal daily tasks and needed help.

I Faced the Ultimate, Difficult and Costly Decision

Given Mom’s diagnosis, the doctors recommended 24-hour care at a facility, particularly one that specialized in treating dementia.  I consulted with a Geriatric Care Manager referred by UCLA who works with families to find the proper housing and care for their loved ones.  We eventually decided on Belmont Village Senior Living in Rancho Palos Verdes.  Belmont Village had a beautiful facility and grounds, and better yet, a residential space for Mom similar to her Florida condo (which we were able to decorate in similar furnishings).  They not only offered special mind-stimulating classes for residents suffering from dementia, they had other fun daily activities such as art, music, dancing, exercise, movies, and more!  No sitting or staring into space or watching TV for hours.  They also had a fantastic dining facility, like a restaurant where the residents were seated and ordered their food.  Mom could make friends with similar high-functioning seniors and socialize with them at meals (and I was reassured that she would be eating well each day).  They even had a hair and nail salon on the premises, where Mom now goes to get pampered each week.  I was really afraid, when I checked her in, that she would react negatively and try to leave, but the Belmont Village staff seamlessly handled the transition like true professionals and she loved it there within a few weeks.

While searching for a care facility for my Mom, I am not going to lie, I was pretty shocked by the costs of these facilities. When all of the “extras” were added in on top of the “base” fees….WOW!  Given my background in estate planning, I was aware that, in general, it was expensive for any kind of senior or nursing home care, but I was not quite prepared for how expensive.  Thankfully, with the help of my parent’s financial advisor at Pence Wealth Management and some Long-Term Care Insurance that was in place for Mom, we were able to get these costs covered without eating much into her principal (a long-term concern, even though my Mom was 94, because her sister was 99!).

It Turned Out to Be
The Best Decision I Ever Made

This is the kind of personal family matter that not a lot of people talk about.  How difficult it is to see your parents get older and no longer able to take care of themselves.  Even though, in the back of my mind, I knew that this day would eventually come, I still was not fully prepared for the reality when that day did come.  “Putting Mom into a facility” was something I and my siblings never wanted to do, but she already needed 24-hour dementia care that none of her children or caretakers at home were in a position to provide. I will never forget pulling out the checkbook to write that first payment to Belmont Village on the day I checked her in.  My right hand was trembling so badly that I had to use my left hand to hold my right hand just to sign the check!  I was filled with a mix of emotions, ranging from guilt, anxiety, sadness, uncertainty and fear.

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

As most people know, there is no cure yet for dementia or Alzheimer’s.  However, with the proper care, they 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 have most certainly been extended.  My Mom still recognizes me and most of our close family members. She retains some limited long-term memory, where she can recall fun stories or memories when prompted.  Most importantly, she is happy and raves about her new home (in fact, she relishes giving her visitors a full tour, as if she really were showing off her own home!).  And she never worries about or even asks about money anymore, since I was able to fully take over her affairs as the Successor Trustee of her Living Trust after I received two doctor letters confirming her incapacity.

 Thankfully, a BIG Event is Coming Soon!

Mom at her 94th birthday (2019)

On September 9th, we will be throwing my Mom a 95th birthday party!  She will be permitted to have a few select friends and family to sit with her outside on the covered patio, properly socially distanced due to COVID, and we will all get to sing her “Happy Birthday!” (through our masks).  It’s certainly not how we imagined celebrating her 95th birthday, but we are so grateful to be able to still have her with us and celebrate her long, full life.

My Takeaway from This Experience

I hope I can pass along to you and others the need to be aware of and not deny the early signs of memory loss, which could be dementia or Alzheimer’s disease.  (Check out this article, “10 Early Signs and Symptoms of Alzheimer’s” from the Alzheimer’s Foundation.)  The sooner that you can act and come up with a proper care plan that makes sense for your loved one and your family, the better.

Also, as I mentioned, the care or housing (or both) can be very expensive. However, there are newer options for Long-Term Care Insurance and other financial planning strategies that you can start to put in place to help off-set some of the costs down the line. It is also possible to reduce these costs by looking at other care alternatives that may be more feasible and affordable, such as maintaining the person in their home with 24-hour custodial care. In our seminars we talk all the time about how it’s not a matter of “if” you’re ever going to become disabled or too ill to take care of yourself, but when. I’ve seen the statistics that, once you’re over 60, there’s a 70% chance you will require some form of long-term care, potentially for years.

There are also some estate planning actions you can take early, like having the appropriate person named as immediate agent under a Power of Attorney or as Co-Trustee under the Living Trust.  And, when the point of incapacity is reached, as evidenced by two doctor letters, quickly transitioning that person into the status of Successor Trustee.  All of these things are why we stress the importance of a well-built and properly maintained Living Trust-based estate plan.  We may also be able to obtain government benefits, such as Medi-Cal (known outside of California as Medicaid), to help pay for a substantial portion of the care costs.

Last, but not least, I know that people may have different opinions about placing elderly loved ones in care facilities.  I certainly respect everyone’s individual view on this for your own particular family. 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 your loved one the time, medical attention, and care that he or she really needs, even with a live-in caretaker.  In any event, I do highly recommend having a Geriatric Care Manager meet with you, understand your family’s budget, and your senior’s needs.  Our Geriatric Care Manager helped us with all of these items, which was truly a blessing.   Every time I visit with my Mom, I am reminded of how happy she is and, it is in that very moment when she smiles and waves goodbye when I leave, that I know I made the right decision for her happiness and the quality of her life.

 

 

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