A Daughter’s Walk with Dementia

A Daughter’s Walk with Dementia

A Dark Cloud on the Horizon

“I hope you are not going to be the one to look after your Mother.”  Those were the words of one of my close friends when I told her that my mother had been diagnosed with Alzheimer’s disease.  My friend was studying psychology at the time and knew what she was talking about.  I, on the other hand, thought that she was being heartless.  Of course I could take care of my mother! She was simply a little forgetful and a bit of an academic scatterbrain.

Little did I understand the heartbreaking and terrifying journey that my mother and I were about to embark on.  If I knew then, what I know now, would I be prepared to go on that journey?  To this day, I cannot answer that question.

At the very young age of sixty-five years old, my dear mother was diagnosed with Alzheimer’s disease.  The changes in her were so subtle that no one took any notice.  She would be absent-minded, forget names and miss appointments.  If asked to bring anything to a function, she would totally forget.  Many times she forgot arrangements to babysit her beloved nephew and niece which created quite a stir in the family.  I noticed that she did not dress as well as she used to and her home was certainly not as clean and organized as usual.  If she forgot an appointment, she used the same excuse “Some poor barefoot Black ladies came to me and asked me for food.  I felt so sorry for them that I invited them in for a meal.”    Her friends and I thought that my mother’s change in behaviour was due to stress while trying to finish school textbooks that she was writing … or possibly a bit of depression which she tended to get.

Eventually friends and family, including myself, became angry with my mother.  Some said that she was disorganized and anti-social, others said she was just being selfish and looking for attention.  It was so painful to see her hurt by her so-called “friends” who rapidly withdrew from my mother.  When she finally passed she only had two true friends who were actually almost strangers.  An eighty-three-year-old man she had met at a retirement centre and an ex-colleague who she had worked with at the Soweto Teachers Training College.  These two people continued to visit my mother, take her little gifts, read to her or just chat.  To those two people, I will always be so grateful.

The Turning Point

Slowly but surely the disease progressed, eating away at my beautiful, strong and beautiful mother.  I realized that something was seriously wrong with her.  We all have turning points in our lives and I took the decision to move my mother from Pretoria to George in order for me to care with her.  The reason for the turning point was …

My mother was living alone (on her insistence).  One day a truck arrived at her home, four men got out of the truck and offered to spread compost over the lawn of my mother’s small but pretty garden.  Being such a keen gardener, she agreed. When the work was completed the men asked for payment of R 7 000.00!  With shaking hand my mother wrote out a cheque for them.  However, she made so many errors that the bank rejected the cheque.

The men returned to my mother’s home and demanded, rather aggressively, for payment.  Then God intervened!  A good neighbour realized that something was amiss, and came to my mother’s rescue.  He called the police and a settlement of R 2 000.00 was reached.  As much as she denied it, my mother could simply NOT live on her own any longer.  Her safety was at risk.

A Very Rough Trip

A few days before I drove with my mother, from Pretoria to George, I packed up her belongings.  I was shocked at how dirty her home was.  She had always taken such good care of her belongings and now everything was sticky with grime or covered in a layer of dust.  Food in the cupboards and fridge had expired, in fact, most of the food could no longer be eaten.  My mother flew into a rage, beating her fists in the air when I tried to throw the old food away.  I was horrified at her rage but most of all at her illogical need to keep the rotting food. My brother and I had great respect for our parents and it felt so strange to force my will (or at least my need for good food) onto her.

The night before we left for George, I got no sleep.  My mother was very restless and kept coming into my room, switching on all the lights and wanting to chat.  I was panicking!  How on earth could I drive all the way with so little sleep? Was she totally crazy?  Much later I learnt that her behaviour was all stress-related and for a person with dementia, being “restless” was a coping mechanism. For the first (and last) time in my life, I lived on energy drinks during the drive.

Will I ever get the sound of my mother’s gulping sobs out of my mind?  She cried all the way from Pretoria to Bloemfontein until she fell asleep.  My feelings were so mixed, despair for my mother and anger for having to deal with this burden.  We were also travelling with my mother’s sweet little Jack Russel, Teddy.  Her gorgeous, massive Bull Terrier, Ruby, who had the gentlest nature had to be left behind.  Unbeknownst to my mother, as we were driving, Ruby was euthanized.  This evil disease even affected an innocent animal!  Another part of my mother’s heart broke … never to be healed again.

The rest of our trip was relatively calm … until we reached the beautiful landscape of Meiringspoort.  My mother became very stressed, almost to a point of panic.

“Please drive slowly, those rocks are going to fall on us!”
“Look at those big stones!  They are going to crush us!”
“Is there not another way round?  Big rocks are going to roll down and damage the car!”
“I don’t’ like it here!  The big stones are scary!”

… and so it continued.

Nothing I could do would calm my mother until we were through the pass and I stopped on the side of the road and gave her some tea.

No Home Sweet Home

I was still convinced that my mother could live happily on her own, at least with my help.  After all, she had survived so much in her life and had always come out on top.  Not only was she a fighter but also a winner.  I helped her to buy a lovely little cottage in a retirement village.  Sad to say but the residents and staff were not welcoming or understanding towards my mother at all.

She was desperately lonely and confused.  Eventually, I met a careworker called Elizabeth who I hired on a part-time basis to take care of my Mother during the day.  Fortunately, my mother had taken great care of her finances (to a point) and was able to afford this service.  Elizabeth was a Godsend!  She made healthy meals for my mother, did her hair, went for walks and encouraged my mother to be active.  This wonderful woman truly CARED about her clients and it was incredible to see true love, patience and compassion…something I was to use in later years.

I took over all aspects of my mother’s life, just as well, because I was struggling to find employment at the time.  Our roles had reversed and I was now the parent. When I examined her financial and administration affairs there was a great deal of updating and cancelling to do.  My mother owed R 32 000.00 in taxes which was ten years in arrears!  She was paying for services she had not used in years, internet connection (my mother never mastered a computer), magazine subscriptions and an expired cell phone contract.  It was a laborious task but to this day I am fastidious about administration and finances.

My mother’s strange behaviour and depression escalated.  It affected my personal financial situation, health and my relationship.  Somehow she knew she was ill.  Often, in floods of tears, she would ask me to help her commit suicide.  I seriously considered it!  I could just not bear seeing her pain.  In South Africa, assisted suicide is a crime and I knew that if I helped my mother to die, I would be in a huge lot of trouble.  The only solution was for both of us to commit suicide.  So….being a very organized person, I planned everything to the last detail to ensure success.  Somewhere and somehow I could not go through with this.  I seemed to rise above this act and chose myself over all else.  Perhaps this was God’s way of telling me to look after myself as well.

Another turning point presented itself …

Very late one night I received a call from the frail care staff saying that they had found my mother wandering on the streets.  She had packed a small suitcase with a packet of biscuits, a teddy bear and a small blanket, and was off to Johannesburg to teach again.  Thank God they saw her and got her safely back to her house.  When I called to thank the staff I was told “You had better do something about this.  Our staff do not have time for this nonsense.” I was so angry and decided not to reply in case I flew inappropriately into a rage.

The very next day I started looking for frail care facilities for my mother.

A Silver Lining

I was exhausted from running between my home, trying to find employment, supporting my partner but most of all … caring for my mother.

Often I fell ill with colds.  I felt so alone, everyone telling me what to do but not practically helping me.  My dear brother in Australia felt helpless as he was so far away.  However, he was always there to help me make important decisions.  Then God intervened again.  I saw a tiny advert in our local newspaper advertising the monthly meeting of the George Alzheimer’s Support Group.  I attended immediately and a whole new world was revealed to me!  For the first time, in a gentle and caring environment, all aspects of Alzheimer’s disease were explained.  At these meetings I would often just cry but it was a wonderful release for my stress.

I read and researched everything about Alzheimer’s that I could lay my hands on.  It was a thirst for knowledge that to this day I cannot sate.  Finally, this fog of confusion was lifting and I was no longer a victim of this disease.

Through the support groups, I made contact with Excellentis, a place where clinical trials were done on various medications.  My mother took part in the clinical trials.  Once again we were surrounded by people who enveloped us in their love, care and support.

The Crossing Over

As much as I tried to allow my mother to lead as normal a life as possible, I knew that she would need special care.  The frail care where I placed my mother was very upmarket and the care she received was excellent.  HOWEVER, I soon realized that the staff were not really geared for dementia residents.  There still remains a desperate need for education for those dealing with those with dementia.  I realized that I knew more about managing a person with dementia that most professional staff!  Having said that, I must express my deepest gratitude to all the staff especially the careworkers.  They work under stressful, demanding circumstances, with low wages and yet still get the work done with a smile.

I too, made some horrible mistakes.  When my mother hallucinated I told her to “look properly and stop being silly.”  Or the time she wanted to visit her late parents and I ignorantly replied: “Oh, they died years ago.”  I remember the look of shock and sorrow in her eyes.

The disease continued its juggernaut of destruction.  By now my mother shuffled slowly on her feet, had many falls, could no longer speak or feed herself and had difficulties with swallowing.  The worst was when she became unresponsive and would sit and state into space, lost in a world where I could not reach her.

Apparently, Alzheimer’s disease progresses much faster if the person is younger.  I would pray for my mother’s release, then feel guilty that I was asking for the death of a person I loved dearly.

Mercifully this is exactly what happened.  I was spared the long drawn out departing of my mother’s soul.  The call came early one morning.  My mother had experienced a massive stroke and had passed away immediately.  Strangely I question the circumstances of her death because it did not make sense. However, I have decided to be at peace with my concerns.

Grief

My first tears were simply out of duty.  Tears were shed because it was the right thing to do.  Anyway, there was so much to do: funeral arrangements, ordering flowers, catering, family and friends to contact and tons of administrative tasks to complete.  Certainly no time for mourning.

I did not experience the different stages of grief. I had been through them over and over during the ten years of my mother’s illness.  Very deep grief takes time to be exposed from its abyss and be healed.  Small bits of sorrow eventually came to the fore, were dealt with and peacefully laid to rest.  The pain of loss never leaves us, we simply learn to manage it better.

This is why I so strongly identify with “die tweede rou” (second mourning) as the writer, Elise Nel puts so well.  True grief can affect us long after the actual loss.

Forward!

My mother’s ashes are scattered in Kirstenbosch Gardens in Cape Town.  She loved those gardens and I know that her soul is happy and free.

I promised myself that once my mother had passed, that I would NEVER deal with any kind of dementia again!  God had other plans.  My passion for the care of those with dementia increased, I wanted to help families who found themselves lost in this disease and I wanted to learn more about all types of dementia.  I became a qualified careworker, specializing in dementia care.  Therein lies another story, for another time …

All my thanks and appreciation to:

My partner Noel, who stood by me at all times.
The committee members of the George Alzheimer’s Support Group.
The staff of Excellentis in George.
All the wonderful careworkers who cared for my mother.
God our Heavenly Father, who gave me inner strength when I could not go on.

Jennifer Tiley