How my family battled with my father’s Alzheimer’s

“I couldn’t remember if I took my medication or not this morning; so, I took them anyway; just so I do not miss a dose”

When I heard my father saying this more than once; I was at my wit’s end.  “Why don’t you understand?  These are potentially harmful medication.  Double doses can be as harmful as missing a dose.  Why can’t you remember?  Why are you so careless around your medicines?”  I remember yelling at him; exasperation clear in my tone.  I was a new nurse working in the middle east by then; and this conversation and many others like this made me lose my peace knowing that I was thousands of miles away from him.  It was his cardiac and hypertensive medications we were talking about here.  “Each time I send him grocery shopping; he comes with half the items on his grocery list.   The grocery list remains unopened in his pocket.”  I was used to my mother’s constant complaining by now.  If there is one thing that I regret to this present day; it was my failure to recognize the signs of early Alzheimer’s. It wasn’t until, one morning he took my brother’s 10-year-old son to the market and came back without him that I began to put the pieces together.

As anyone with a loved one with Alzheimer’s will have experienced, Alzheimer’s affects not just an individual but the entire family as well.  For with the diagnosis come the novel challenges of dealing with progressive memory loss, changes in the personality and the huge, sometimes dramatic changes in the family dynamics.  

My dad may not have been the most highly educated person, but he sure was one of the smartest.  Being a veteran and having fought the Kargil war during the 60’s, challenges, hardships and risk taking came as second nature to him.  I have heard stories of him trying to bake in the icy glaciers surrounding the India-Pakistan borders.  From hockey to sharp shooting during his younger ages, to toiling in the middle eastern deserts in his middle age, and then attempting his hand and exceling in construction business, the word ‘impossible’ never existed in his dictionary.  He was a natural survivor and born to excel.  That’s how people who knew him remembered him……. all until the Alzheimer’s creeped into his brain, unbeknownst to him or to anyone else… like a thief that enters in the dark……and took it all away from him.

Progressive Deterioration

Our memories are what define us; our past determines our future. But what happens when that past is lost? What are we, without our memories? How do we know who we are? I used to say that we are made of our memories, but what happens when memories are lost? Who are we then? How do we connect those bits and pieces that lay scattered in our vast mind?  That’s unfortunately how it is with Alzheimer’s.

Changes in Personality

With the memory loss, came the changes in his personality and behavior.  Just as he couldn’t remember if he had taken his cardiac medication or not, he could not remember if he had taken his habitual evening drink or not.

 Result?  You can imagine! 

He went for a second drink, and then the third; which did not help with his already failing memory.  With increased alcohol, came the quick temper, the easy frustration and the occasional paranoia. We noticed that he had been taking longer than usual to return from the grocery store.  Was he forgetting his way back home?  We will never know; except for the fact that he began wandering around in the odd hours of the night.  One rainy morning he was gone for hours altogether and the local police had to get involved.  He was found wandering aimlessly away from home, in his sleep wear, no slippers, soaking wet, and blistered feet. His personal hygiene at this point was almost non-existent.  Social life had totally diminished.  The fun loving, risk taking, adventure seeking man of the past was now replaced by a confused man, old and frail, a ghost of his former self, skeletal, inarticulate and lost.

Constant war with failing memory

When a person fights a losing battle with memory, nothing ever remains the same.  From struggling to find the right word in a conversation or forgetting names of people and objects to losing things and misplacing them around the house, every minute task that we often take for granted becomes a war in itself.  There were times when he forgot our names but he remembered his childhood town and the house that he grew up in.  He had vague memories of the kargil war of the 60’s and his grief was tangible as he recalled those days.  This is often the case with people suffering from Alzheimer’s.  Short term memory is the first to go; followed gradually with the long-term memory. This is probably because older memories, which are recalled more often, are better established.  

The Silent Unseen Sufferer

And what was lost in the process was a part of my mother, who now feared to sleep in her own home wondering what would be his next move.  Will he just wander away again?  Being sick herself, she too suffered from stress and emotional turmoil and her mental health began taking a toll.  It was now time to find him a shelter away from home, if only to ensure his safety and her sanity.  It is a well-known fact that the full time care-givers of people suffering from Alzheimer’s often experience increased stress, deterioration in their physical ailments, depression and social isolation.  Loss of intimacy, fear and uncertainty of the future and grief to see their loved one suffer often cause untold agony.  And we all experienced it first-hand.  But my mother took the most of it as she was the only one by then who was directly involved in his care.  She took on the struggle silently, always the caring, gentle and soft-spoken wife to her husband.

Change in family dynamics

This was a perfect time to come together as a family.  It was time to unite and take over tasks and share responsibility.  His medication was taken away from him and stored in a safe place.  Each day, I took the initiative to send a reminder to mom to give his daily meds.  Pill sorters were used to make this task less challenging for her.  Each one of us had reminders installed in our phones for his doctor’s visits and appointments which took away quite a chunk of stress from my mother.  It was not a transition without conflicts.  Each one of us-three siblings had our own sacrifices to make and significant changes became a part of our day to day lives.  Each day was a new learning and coping opportunity.

Reversal of roles

Along with many other emotions that we were already experiencing, role reversal was the hardest to digest.  Our dad had always been the bread winner, decision maker and the man of the house.  This was now changing as were taking over the reigns.  At times we were engulfed with guilt, while wondering if we were doing enough.  At other times, the grief and a sense of loss took over.  We craved for the man he once was. 

Holding on to what once was

One thing that kept us going during this difficult time was holding on to our beautiful memories of what once held our family together.  The way he showered his love on us; his absolute understanding while we took our life’s decisions, our annual vacations and his thirst for travel; and his love for cooking! Reviving those beautiful times spent together we couldn’t be more grateful.  This was our moment to shower our love and understanding on him.  To reciprocate the same affection that we once received.  To give our best to the one guy who never hesitated to give us his all.

Alzheimer’s friendly home

It did not take us long to realize that the home we lived in was no longer safe for our dad.  Changes had to be made.  The staircase needed rails.  So did the bathrooms.  Unnecessary clutter around the house had to go away.  His personal items like his eye glasses and wallet were always beside his bed.  His bedroom walls were decorated with the best family moments-in case he remembered the wonderful times!  The unnecessary furniture had to go to make more walking room.  Bathroom was kept safe and simple and well lit.  The hallways leading to the bathroom had automatic lights with sensors were installed which would light at the slightest movement.  All the rugs and mats had to go away to avoid any falls.  And most important of all, the doors were tightly locked at bedtime and mom kept the house keys safely hidden so he would not wander away in the dark.

Communication

Simple answerable questions

As a nurse; I was always taught to ask open ended questions; so as to obtain important information.  But with Alzheimer’s, open-ended questions were not the way to go.  Simple, answerable questions were the key.  Questions that could be answered with either a ‘yes’ or ‘no’ were a great hit.

Minimal distractions

We learnt to turn off the television and the music while trying to strike a conversation.  Any meaningful conversation had to take place inside the house

Offer understanding; Not yelling

This I learnt the hard way.  I still regret my initial yelling and complaining and bickering; when I did not understand what was going on!  A lesson well learnt.   On the same note; I learnt to avoid power struggles.  Pushing, nagging, haranguing, or yelling will only result in disrupted relationships; and might lead them to get their backs up, doing more harm than good.

Home away from home:

As days progressed into weeks and months, so did his symptoms.  It was now getter harder and harder to care for him at home.  We had to find another home; a home away from home, where his medical/emotional needs would be better met.  A relative once recommended a place that took in and cared for people with Alzheimer’s.   After a couple of failed attempts at placing him successfully, we found a place that was appropriate to meet his needs.  A caregiver was assigned just for him.

Last moments

I remember the cold January morning when I visited him in his new home.  He did not remember me or my kids.  He couldn’t tell me if he had eaten or not.  I did not know then; that was the last time I was seeing him.  For a couple months later, I received a call from my brother saying that he had passed.  Peacefully and painlessly.  All alone in a home with no one to call his own.  With no memories whatsoever.  But he left behind a ton of beautiful memories!  Memories that I cherish to this day!  He taught me valuable lessons of strength and courage!  To persevere and to never give up!

Parting words

To those who have loved one’s suffering from Alzheimer’s or dementia, remember the person is more than his disease. Each one of your words and actions matter. Make your every action count. Enjoy and appreciate your time together; for tomorrow is never promised to anyone! One thing to remember though!

Your loved one’s emotions last more than the actual memory of the event that caused them. Always be mindful!

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