My Favorite Mother-In-Law…

WARNING: This post may not be easy to read, particularly if you have lost someone recently or are dealing with someone suffering from Alzheimer’s.  However, it is also a love story and example of how strong love can make us.

Recently, I’ve had many occasions that made me want to eagerly click away on my keyboard, sharing my thoughts and emotions as I’ve done so many times over the past four years.  However, I just haven’t had the energy, even though it’s always a cathartic experience for me.  I even missed my annual “state-of-the-state” birthday address, which has been a consistent part of my celebration for three of the past four years.  Why did I miss it?  As most of my friends know, my lovely wife’s mother passed away the day before my birthday.  So even though I’m a few weeks late, I want to write this entry and instead of my usual birthday entry, I want to write to you about this special woman.

Margaret or Peggy as most knew her was born in pre-World War England in the city of Norwich.  From the few photos we’ve found and the little she spoke of it, those early years appear to have been a happy time.  That is until WWII hit her city.  The air raid sirens sounded on the very first day of the war when she was just shy of 6 years-old and then no less than an additional 1,488 times throughout the following years.  Historians estimate that these ‘events’ (not each siren resulted in an actual air raid) lasted 1,887 hours and 51 minutes.  When put together that totals to 79 entire days.

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No one knows how many times she was rushed to the bomb shelters, but it left a deep scar on her heart and mind that she rarely spoke of.  One night before Deb and I married she just started freely discussed it with me and mentioned how she often went to bed dressed in her school clothes so if she had to go to the shelter during the night, she would be ready for school the next day.  She shared a few other details of how horrible it was, and then as if catching herself speaking about some forbidden topic, she changed the subject.  Only on rare occasion did a few words slip about the horrors brought on by the war.  However, most of the memories she shared about that time were related to her love of dancing, which was supported by several photos we uncovered recently.

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Sometime in her early teenage years, her mother and her were moved to an American base in Germany where her soon to be step-father was stationed.  Along with her twin step-sisters, they moved to the US shortly after and according to her, she quickly lost the word ‘step’ and they were now a family unit.  Mom, dad and three sisters…

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Fast-forward to 1984… During that summer I met her daughter and if not for Peggy, we might not have had a second date.  When I took out Deb the first time, I was not looking for a long-term relationship.  We had a great night, but I had no idea what would come of it.  A few nights later, I was trying to figure out how I wanted to spend a night off from work.  Rather quickly, I realized I wanted to take Deb out to the movies, so I went by their pizza place to see if she was there.  Her mom informed me she had just left but told me to have a seat and she would try to reach her.  In those pre-cell phone days, it wasn’t always an easy task.  She could reach Deb but left a message at home telling her I was there.  As we waited, we chatted, laughed and formed a real bond.  Before you know it, well over an hour had passed when Deb walked back into the restaurant.  She wandered back by chance as she had been out and about.  She hadn’t even gotten the message.  I said goodbye to my new friend and off I went with her daughter.  If she had not been so engaging and fun, I may not have waited for Deb (as I said, I wasn’t looking for a long-term relationship yet) and may have moved on.  Probably not as Deb was already embedded in my mind, but I can tell you that the conversation I had with her mom and the ease with which we spent time together, set the scene for our relationship.  We spent countless nights playing board games with her mom in those early years and had many laughs.  A trust was built that played a key role in her later years.

In those early years, I quickly learned that Peggy loved all things shiny, glitzy or that actually lit up.  If it lit up and played music, it was a double win in her book.  The beautiful thing was that although her love of shiny things extended to jewelry, the actual value didn’t matter.  Costume jewelry, plastic light up necklaces or a real diamond all gave her an equal amount of joy.

On April 23rd, 1988, Deb became my wife and Peg, my mother-in-law.  She (and Deb’s dad) saw that our wedding was the event of a lifetime and it was a celebration of our families joining.  Soon there were no dividing lines marking where my family ended and Deb’s began.  Both families spent the holidays and special occasions together.  It became a running joke that I was her favorite son-in-law (I was her only son-in-law) and she was my favorite mother-in-law.  It may have been a joke, but it carried a lot of affection.  Oh by the way, her love of light-up things was even present at our wedding; with our full approval and excitement, Deb’s bouquet and all the flowers on the head table had tiny, intricate lights woven in.  It was spectacular and very rare back in 1988.  We loved it.  (Note: Per her wishes, she was buried in the dress she wore to our wedding)
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As the years went on, she began to change.  She went from a fun-loving outgoing lady to one that was afraid of her own shadow.  She was so claustrophobic, that even nail polish could be too much at times.  Was this a remnant of those nights in the shelters?  We often wondered, but could not find answers.  In hindsight, we now know that Alzheimer’s disease was starting to grab hold of her.  The change was slow at first, with her becoming forgetful but hiding it well.  It took years for us to realize she was having major memory lapses.  It was only three and a half years or so ago that we started to suspect Alzheimer’s was the cause, but now suspect it plagued her for well over a decade.

If I had to draw a line in the sand to mark the beginning of her decline, it would be her final visit home to Norwich, England.  She often went there and would stay as long as a month some times.  If she could find an excuse to stay longer, she would take it.  Something happened that scared her during that trip.  Was it the return of a childhood memory and the truth behind the horrors she had faced or perhaps seen?  Was it not recognizing her old hometown?  Or perhaps, not remembering how to get from point A to Point B?  We will never know, but she changed and was never the same.  She came home weeks early blaming volcanic activity that was threatening air travel across Europe, but in the past that would have simply made for a great excuse to stay longer.  Not that time though.  Instead, she came home afraid and showing more severe signs of the disease.

A major problem in getter her diagnosed was that she outright refused to go the doctors.  She always had.  That and taking pills were strictly off limits for her.  It took well over a year or consulting with doctors and the Alzheimer’s Association to finally find a way of tricking her into going.  The details don’t matter as to how we did it, but as her “favorite son-in-law” I hated having to trick her.  However, I was by her side for that first appointment and then with her at the Neurologist as she diagnosed my “favorite mother-in-law” with Alzheimer’s.  During that visit she was struggling with the memory test and half-jokingly asked me to help her with the answers.  I laughed and told her I couldn’t help her.  I couldn’t help her.  That sums up the diagnosis of a disease like this.  I couldn’t help her make it go away.  I could only try to comfort her and along with my wife and father-in-law (and the rest of the family) and be there for her.  So that’s what we did.

At times the Alzheimer’s worked to our advantage.  She forgot she disliked doctors and even forgot she hated taking pills on occasions.  She would even ride in an elevator; something she refused to do the entire time I knew her.  It was certainly not an even trade for losing one’s memory, but a small blessing in some ways.

The true point of no return occurred April 14, 2013.  While entering her home she tripped and fell, breaking her hip.  By the time we visited with her after surgery on April 15, the end had begun.  That afternoon we watched the television in her room in pure horror as the events at the Boston Marathon were played out.  At some point she woke and was confused, which can certainly be expected after surgery.  Shortly after that, she refused the meal they brought her.  She would never eat an entire meal again.  As she went through rehabilitation for her hip her body healed rather quickly, but not her mind.  In the early days of her almost eight month hunger strike, we thought it would pass.  She would begin to eat, regain strength and perhaps some of her faculties.

Soon she was back in the comfort of her own home and we hoped this would help her.  It did not.  The confusion grew and she continued to refuse any type of food.  Some days she would not even drink anything.  We visited daily and did our best to try to encourage her to eat.  From that point in late April, communication with her was hit or miss.  She would start a sentence, but stop mid-way through and say never mind.  The fragments she did say seemed (at that point in April and May) to return to her final trip to England.  She would state how she should never have come here (she was safe in her own home) and didn’t know how she was going to get home.  Of course, not all in one sentence; just fragments ending with “never mind”.  I suspect that at this point in her decline she still knew what she was saying wasn’t correct, and on occasion her comments indicated this.

As spring turned into summer, no real improvement came for her.  There would be moments and sometimes days of a somewhat clear state of mind, but she still refused food.  The doctors said to offer all types of food and drink, but she wasn’t having it.  When asked why she would not eat, her reply often was that “they told her she should not eat”.  Who was this “they” that gave such advice?  We tried and tried to find out what was going on to no avail.  Was she remembering her childhood in the shelters when food was rationed?  We don’t even know that she experienced that, but it sounded plausible.  Whoever “they” were, real people from the past or simply voices in her head, “they” were persistent and she repeated their instructions whenever asked.  How do you fight an enemy that only exists in another person’s mind or memories?  We learned we couldn’t.  Her disease had short circuited the part of her brain that should have let hunger overpower imaginary voices.  (I need to mention that a feeding tube was not an option.  Her Living Will was quite clear on this.)

Fall approached and so did another defining point, a massive infection.  She was hospitalized and given antibiotics that required her transfer to a nursing home while she finished the regiment.  We had been discussing hospice care for some time, but my father-in-law wanted to wait.  Now the waiting was over.  So many doctors, nurses, case workers and staff at the nursing home reassured him it was a good idea that we finally had a meeting with them in early September, while she was still at the nursing home.

I cannot say enough good things about the hospice workers.  That very first meeting lasted almost two hours and all our questions we answered.  My father-in-law felt comfortable with the decision to enter her into the care of the hospice workers.  Then he made the bravest, least selfish decision I have possibly ever had the honor of seeing first-hand.  Honoring a promise made years ago that she would not be put into a nursing home, he stated he wanted her to come home.  So that Saturday in September, we moved her back home and started meeting all the members of the hospice staff that would be visiting.  We were told she most likely would pass within three weeks based on her condition. Hospice quickly had her anxiety medicine turning into a strong liquid compound that required only a small dose be squirted into the side of her mouth to be effective.  Finally, she began to have a calmer demeanor.  However, “they” continued to win the battle and she did not eat other than a mouthful here and there.

She was never alone.  Her husband of 59 years stuck by her side literally by lying in bed with her for hours on end during the daytime watching television.  Despite the fact that her restless nights would surely mean no sleep for him, he still shared a bed with her and did his best to comfort her.  Deb and I stopped by daily and her son came home as many weekends as he could.  Everyone did their best to see that she had plenty of company.

The three week window came and went without any major developments.  As October passed, she became confined to her bed and was moved to a chair on rare occasion.  “Death is imminent”, was the prognosis repeated over and over.  While I sat with her one October afternoon, she was quite upset and I asked her why.  My suspicions were finally confirmed as she looked at me and said “I have to get to the shelter, but I can’t”.  She was trapped in a childhood nightmare.  Now, let me be clear about the fact that we were very careful to NEVER discuss our suspicions or say anything in front her that could trigger these memories.  In our non-medical, non-scientific opinions it made sense.  We had watched as any recent memories became erased and seen how she hardly ever recognized us in her final months.  Yet the longer you had known her, the more likely she was to remember you.  For example, in the middle of a bad spell she recognized her sister whom she had known most of her life, but no one else.  Additionally, when asked about things from several decades earlier she could recall things details, but not remember what occurred five minutes previous.

November came and Deb, my daughter and me travelled to our son’s wedding in Florida and the Bahamas, with much nervousness.  By the time we left she was completely confined to her bed and barely ever spoke.  Midway through our trip we were told again that her death was imminent and we came home a week early.  She was strong and held on though.  They told us we needed to tell her it was okay to let go.  My father-in-law, bless his soul, could not do this.  He had been with her 24/7 (literally) for three months and didn’t complain once.  He said he just couldn’t be the one to tell her that.  I tried.  Once.  Only once.  While I was alone with her, I looked into her eyes and told her it was okay to let go and move on.  Although she no longer spoke with any regularity, she made her reply clearly known by shaking her head no, quite emphatically.  I asked her if she was afraid to and she rolled her eyes and made a face that I fully understood as an “Oh please” as she shook her head no again.  I don’t know why she wasn’t ready, but she wasn’t.  She had been literally skin and bones for weeks (I don’t say this casually, it is the horrific truth and an example of what this disease can do to a person), yet she felt it wasn’t time yet. Death could not have her until she was ready.

The hospice nurse worked on assuring her that everyone would be looked after and taken care of once she was gone.  We all continued to comfort her as she lost control of her arms and they flailed about any time she tried to move them (again, I apologize if this is disturbing, but I want the ugly face of this disease exposed for those that haven’t experienced it).  December came and winter approached.  Her winter approached as well.  On December fourth, our daily visit found her breathing irregularly and her focus pretty much gone.  After reading all the materials hospice had provided, I was sure that the end would come within 48 hours.  We told my father-in-law to call us if he saw any change that raised his concern.  He seemed to know the end was near, but still wanted to hold on.

In the early hours of December 5th, everyone in my house was awoken by a loud banging noise that stopped as quickly as it had started.  Deb jumped up and sat on the side of our bed to listen, after hearing no further noises she laid back down.  Brittany had the same experience.  I wasn’t sure what had happened, but knew I was awoken by something.  Within minutes, the phone rang.  We knew why.  My favorite mother-in-law had just passed.  My father-in-law said he had known she was a short time earlier, as he had heard he labored breathing.  Then he had woken up, gone to the bathroom and when he returned, noticed she was silent and called us right away.  Before I go any further, let me say that I will make no claims as to what made the noises that woke us, but I will say I am thankful for the fact it happened because we were all awake and somewhat clear-headed already.  This made it much easier to rush over to their home.

Upon arriving there, I went in and checked on her.  When no one else was in the room, I put my hand under her nose to see if she was breathing at all.  She was not, but she did look at peace.  More at peace than I had seen her in a long time.  She died with dignity in the comfort of her own bed thanks to a loving husband, supportive family and the unbelievable support provided by the people from Beacon Hospice.

We waited for the on-call nurse from hospice to come.  My daughter and her boyfriend arrived first, about five minutes behind us.  We all gathered in the front room and continued to wait.  When the nurse arrived he was shaking.  It was his first call so he had never done this before.  In a moment of brief levity that my favorite mother-in-law would have surely appreciated, as the nurse leaned over her taking her vital signs his cell phone went off blaring “The Cupid Shuffle” at top volume.  Lesson learned… when verifying if someone is deceased; make sure your phone is on silent.  When he was done and had made a call to the funeral home, he quickly left.  Poor guy…

Soon the gentlemen from the funeral home arrived and after a few minutes we all watched as they drove away with her.  All my father-in-law could say was “poor girl, she never did nothing to deserve this”.  Truer words could not have been spoken.  Alzheimer’s steals so much from its victims before ultimately stealing their very life.  No one deserves that fate.  No one should be tricked by their own mind that starving to death is the only option.  It’s an awful death.  She was strong though and did not go easy.  It took just 10 days shy of eight long months for the infamous “they” to win.  Almost eight months without food and very little drink.  Doesn’t seem like one could survive that, but she did.

I will miss my favorite mother-in-law and the holidays will be very bittersweet as they were four short years ago when my great aunt passed on Christmas day.  Terrible time to experience such loss, but surrounded by family, we will be fine.  She will be present in every shiny light or glitzy decoration.

In closing, let me bring up a few things… One, Alzheimer’s is an evil, evil disease that I pray we learn more about soon and find a real cure.  Two, hospice workers rock!  Without them we could not have made it through the past several months.  My last point is almost as sad as the disease that took my mother-in-law’s life; we are too quick to forget the children of war.  Personally, I never stopped to think about what it must have been like to live in England during the Nazi bombings.  I’ve heard all the well-deserved praise for those that fought against the Nazi regime, we even call the Americans that made sacrifices to support the war effort “The Greatest Generation”.  I don’t disagree with that at all, but think it should be broadened.  We need to give special recognition to those children that grew up under such horrifying circumstances, yet carried on.  Unfortunately, I think many of them are/were like my mother-in-law and never really spoke much about it.  They never got the help or right psychological tools to deal with what they had experienced, and move on.  I firmly believe she suffered from post-traumatic-stress syndrome that went unchecked and untreated all these years.

So as you gather this holiday season, think about the families dealing with Alzheimer’s, cancer or other horrible disease and say a pray for them.  Then take a moment and add another prayer for the children of war.  All of those, that after watching their cities burn and experiencing more death than anyone (never mind a child) should, still have the courage to get up and move forward and live their lives.

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“It is this way for each of us
We all need to be held, at least twice
Once upon the day we are born
And once more when we leave this life…”

Lost Christmas Eve Narration – Trans Siberian Orchestra

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As American as apple pie, but always a proud Brit at heart…

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