Advertisements
 

Everyone’s Journey is Different……

My cousin Randy and I have always been close. Four years my junior, we have always been likeminded.  No one could have predicted that our fathers’ illnesses–similar yet so different–would bring us even closer.

Both our dads’ names were Howard. I’ve told my Howard’s story in this blog for a number of years. I miss him and try to honor him each and every day.

As we approach the first anniversary of Howard’s passing, here’s Randy’s Howard’s story as told Randy.

Love you cuz. You’re a mensch.

11351365_837712812978017_4399414933540204751_n

My dad passed away a year ago suffering from dementia.  I started writing this article shortly after his passing to share my concern about what I perceived was the lack of respect and dignity shown to my father during his illness. With time and reflection, it became more about his journey and ours, which included the search for empathy, respect and dignity.

My father was diagnosed several years ago.     With that diagnosis, we knew his journey through life would change.  I knew my journey with him, my mother’s and his wife of 54 years, and the journey of his family and friends would change also.  What I didn’t know at the time was how much and at what rate it would change.  Given my role in the pharmaceutical industry and some personal experience, I was very aware that current medical treatments may slow the progression of the disease, but not stop or prevent it.  Let’s make no mistakes here, there was no going back.

My mother had her own limitations and her ability to be his primary caretaker or the one to manage his care was in doubt by my family.  On top of that, she had a huge case of denial.  Given this denial, as well as proximity to my parents, the responsibility of caretaker fell to my sister.  She was his saint and ours.

Each patient’s journey is different.  For my dad, he was very much aware of what was happening to him right up his passing.  Through it all, he expressed disbelief, frustration, embarrassment over the fuss, and concern over my mother’s care in the future.  I often wished he would simply forget who he was or simply go back to another time period in his life, so as not to torture himself with how this happened and how this would end.

For him, it started with not finding the right words when he was speaking.  Occasionally he would lose his balance which resulted in a fall.  The same was true for mom, though there was no confirming diagnosis for her.  Aware of his condition, and despite’s my mom’s denial and her ability to be the “navigator” while he was driving, he gave it up when we urged him to do so.  He was acknowledging the change that was taking place.  When we brought up the idea of assisted living and/or memory care, dad was agreeable, but mom didn’t want to hear this at all and thus it didn’t happen.  This denial continued as they both started to lose their balance and fall more frequently.  There was also incontinence.  He stopped playing cards with the neighbors as he was having trouble remembering.  A neighbor later told me that they knew what was happening and they looked the other way.  Not always easy for senior citizens engaged in a game.  Last fall, we noticed the rate of his decline started to pick up.  It presented as more frequent falls, battles with depression, eating less, perhaps as a result of having trouble with the utensils, and not finding the right words and/or recalling memories when we had our daily chats.  He was becoming increasingly irritable with my mom (some deserving, some undeserving, I am sure).  He began to withdraw from conversations, partly because he couldn’t hear well, despite having a hearing aid, but I think mostly because he was embarrassed that he couldn’t follow.  When we were together for family gatherings, I would look across the table and we would smile at each other.  It was a look we had been exchanging for many years.  The look you give someone when you are thinking the same way.  In this case, he knew that I knew he had no idea what was going on.  It became another way to acknowledge the change that was occurring.  I will always remember that look fondly.  Make no mistake, dad was not improving.

Around New Years of 2017, Dad fell and developed rhabdomylesosis (rhabdo).  Over the course of several days the doctor’s successfully resolved the rhabdo.  There were no obvious signs of a stroke.  While in the hospital, his conditioned seemed to worsen, and our options for how he was going to live his life suddenly shrank.  Immediately after the fall he tried to grab things in mid-air.  It was like he was trying to grab little floaters he was seeing with his fingers.  I had never seen this and certainly was not like anything he did when I saw him a week or two prior to the fall.  His ability to speak was also impaired.  I had spoken to him the day before the fall and the difference was nothing less than shocking. After a few days, when he was clinically stable, it was agreed that he should be moved to a rehab facility to gain some strength and work on his stability.  At the same time, we were told that with each move, it will be unsettling and may have a negative impact on him.  He moved to a facility that my parents had been driving by over the years and was on the list of places they said they would consider when the time was right.

Moving to this first facility, however brief, was really my first introduction to elder care outside a few visits to an assisted living or nursing facility.  I was never quite sure if the wing dad was in was a nursing home or a rehab but regardless, after a few visits, I made two major observations. First, the number of visitors to see other patients/residents was shockingly low.  I wondered why, but deep down, I knew the answer and it made me sad.  Second, it was no hospital, meaning with the exception of changing linen, giving medicines, moving to another room for a change of scenery, or some group activity which he had was not able to do, he was alone when we weren’t there.  We watched his behavior change, becoming more agitated.  Days later we learned that the agitation, and yes, some aggressive behavior, was due to a urinary tract infection (UTI).  The doctor was able to resolve the UTI within 7-10 days, but the damage was done, the agitation and aggressive behavior became part of his medical record.  The staff tried on a few occasions to do physical therapy, but he became agitated.  That said, the chance of success was low because they would often come at 4:30, right before dinner, and when “sun-downing” was starting.  Outside of physical therapy, he kept trying to stand and walk by himself despite his ability to support himself was declining.  Sometimes we couldn’t really understand what dad was saying; sometimes he was talking about another time in his life.

Despite having all the legal paperwork in order, communication with both the administrative staff as well as the nursing/caretaker staff was mediocre at best.  Rarely did a caretaker come into his room to check on him or try to understand what he was trying to communicate.  We asked several times if the physical therapy time could be changed, with no response.  There was an occasional nurse who would sit and talk with us as she saw we were looking to understand what was going on.    Interest in caring and responding to his needs seemed to wane.  I get it, it’s not a hospital, and the ratio of caretakers to residents may limit their ability to be more attentive, but he did deserve to be treated in a way that was respectful and dignified.  This was not the proud, soft-spoken, humble, family man we knew, but it was the only side the caretakers knew.   I kept hoping a caretaker would stop to ask what kind of man he was.  They had to know he was loved, as there were few other people visiting this wing of the facility.  Just as important, as my dad, our family expected and deserved regular communication when changes were observed or treatment changed.

As it became clear that he wasn’t going to get the proper level of care at this facility, we began to seek out alternatives.  At the same time, we were told he would have to move as soon as possible.  The administrative office made it sound like a space or financial issue, though we had a sound financial plan in place.  Quickly we reached information overload and it resulted in analysis paralysis.  Identifying the right facility and one that would take him based on his condition was difficult.  We learned that it would be difficult to move him across state lines due to challenges with Medicaid rules; we learned that it didn’t matter whether or not a UTI caused the agitation and aggressiveness, it was just that, agitation and aggressiveness.  To help navigate the maize of options, challenges, and legal questions we hired a lawyer as well as a company that specializes in helping families navigate through elder care and advocate on their behalf.  Yes, it cost money but there was no other way.  We needed to ensure that right decisions were made and frankly know when and how to push back on administrators and caretakers.  My dad would have to get evaluated, his medical records reviewed by a representative of the facility and the facility would then decide whether or not it could provide the level of care needed.  This being new to me, I likened it to tryouts for a sports team or an audition for a stage show.  We found ourselves praying he would pass the tryout/audition.  Unfortunately, many doors closed, and our options kept shrinking.  He was moved to a second facility, battled another UTI, which seemed to present itself in the same way it did before. It was apparent that this facility couldn’t and wouldn’t provide the care needed for him as he continued to decline.  The decline continued with him loosing muscle control, losing weight, incontinence, speech impediments, periods of delirium, and depression.

This led to the third facility; he was accepted there, with the condition that to ensure he needs were met and that his behavior was in check, he would get 24×7 private aides.  Over time, to manage costs, the hours could be reduced.  We hired a nursing agency and saw a revolving door of aides to cover all those hours.  There was one aide that he had a connection with but we were not able to have him scheduled more with dad.  Some, not feeling comfortable, never came back.  With the private aides in place, the caretakers from the new facility absolved themselves of the need to partner with the agency aides to support his needs. During visits you could see the tension between the aides.  When that happens the only one to lose is the patient.  The administrators were in agreement, but it never seemed to reach the caregivers on staff.  My sister worked to improve this on a daily basis, in-person, and on the phone, with no luck at all.  The same was true with our advocate.  Over a period of two months, the facility became comfortable with my father, and we began to reduce the hours of the private aides.    As concern grew that without the aides, his care declined, I walked into what can only be described as a hurricane.  There was “stuff” laying all around; old linen, towels, clothes, old food and drinks, no doubt from the aides; whether it was from the private or facility, it didn’t really matter to me.  Then I turned to my dad, laying in a fetal position on the bed with a diaper.  I was speechless and motionless; I tried to hold my tears in, as my mom was with me, but the shock was too much.  I eventually collected myself and went to the nurse’s station, where I got a response that was almost non-responsive.  I immediately went back to the room, took a breath to get over my shock, and began to straighten out the room.  The private aide arrived and helped clean him up.  I wanted to take pictures to share with the administrators, but frankly it was a horror show and I didn’t want to see it.  My sister was once again left to complain.  To the caregivers, all I could think was, “What is wrong with you people?  Does anyone deserve this?  Would you treat your family in this way?  Doesn’t everyone deserve to die with dignity”?

Throughout this time my mom had been living at home.  Prior to the fall, I could probably count on two hands the number of nights they slept in separate beds.   While my dad was in the hospital, she agreed to have an aide come into her house a few hours a day/ 5 days a week to help with cooking, cleaning, and in her words, “to have a companion”.  By that time, she had lost contact with many friends or simply had little to say, she stopped driving, and wasn’t interacting with the outside world much.  The TV news became her friend.  At our urging she started to use a walker and really felt better about getting around the house.  Seems silly, but we all wanted to celebrate this moment.  She kept on thinking Dad was coming home; while we knew differently.  On Memorial Day, we moved her to an assisted living facility, where she got involved in many activities to keep herself busy.  She didn’t have to make her meals, clean the dishes, and wash her clothes.  The location was chosen as it was close to my dad’s facility and they would be able to drive her there twice a week to sit with my dad.  Quickly she saw that dad was sleeping much of the day, his appetite was decreasing by the day. Her husband, our dad, was slipping away.

Throughout this journey my sister was getting drained.  The downs, were outweighing the ups.  What she wanted, what we all wanted, was for him to stabilize and be comfortable?   My sister and her family were constantly in motion….Where are his glasses?  Where are the hearing aids?  Do the batteries work?  Where is all his laundry?  Why are there no clothes?  Maybe he will eat a hamburger (it became one of his favorites as we neared the end)? Will the aides show up? Do I have time to pay their bills?  As you could imagine, there were many more questions. As my brother and I watched from a distance, I helped by organizing and paying bills.  Except for helping out on an occasional visit and being a listener (sometimes good, sometimes not so much), that was all I could do.  While getting access to all the necessary accounts was frustrating, it was mostly busy work. Compared to what my sister was managing, it was a walk in the park on a sunny day.

About a month after my mom’s move, my sister and our advocate pulled off what can only be described as a blessing.  The assisted living facility where my mom moved to, agreed to accept my dad to the facility, three doors down from my mom.  We agreed to 24×7 aides we started him on hospice care.  After about two weeks, the hospice nurse indicated that the family should gather quickly as the end was near.  We spent several hours with him on Thursday and Friday.  I was so happy that we found a peaceful place for him to stay, near mom, with people who treated him with dignity and respect, in the absence of chaos in the hallways, surrounded by some of his belongings and pictures of everyone he loved.  He was on medication to make him comfortable and on Thursday, he had just enough strength to share that twinkle in his face.  He shared it with everyone in the room.  While it made me sad, that twinkle we shared was worth a million dollars.  On Saturday morning, the hospice nurse suggested that we share some last words, and tell him that everyone had come to see him, then let him leave us when he was ready.  It hit me profoundly that I wasn’t there to see him take his last breath, I was there to say goodbye to my father, my biggest fan, and my hero.  As Saturday progressed, we did just that, over the course of several hours, family said goodbye to him and left the room, with my mom being the last one to leave around 8:30.  Several hours later he passed peacefully.

It was a long eight months for the family.  It must have felt like an eternity for my sister and her family.  Throughout that period, I made sure to tell my dad how much I loved him.  I told my sister and her family how grateful we all were to her and her family and that we knew how hard she was working to make dad comfortable.  I also told her several times during the final two weeks that in the end, he passed in peace and we owed it all to her.  Now, as we mourn the loss of dad, our attention will turn to our mom, just like dad would have wanted it.

Over the next decade or so, our society is going to be faced with a tremendous crisis.  The numbers of patients with dementia, Alzheimer’s disease, and other complex diseases in which there is no treatment will increase.  We need better care, including compassionate healthcare workers.  We need to address this problem even though resources will be limited and costs will increase.

Remember, it’s the disease causing these behaviors and not how the patient was or wants to be seen.  My father and everyone on the journey towards end of life should be treated with dignity and respect as their time here ends.

IMG_6896

 

Advertisements

~ by Butch on July 27, 2018.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

 
%d bloggers like this: