Living in Christ, Living with Alzheimer’s Disease – Carole Rowe

Prologue

Alzheimer’s was something I knew nothing about when it ‘popped’ into my life. It started with a ‘bang’, then there was an awareness that something which was, was no longer. I got frightened and uncomfortable, uneasiness set in.  It brought with it an urgent knocking – hello, are you there? I need your attention.  Everything you knew before was no longer applicable or relevant as I was forced to move into a new way of living.  This unknown world changed each day without notice, so I could not plan for tomorrow. I never knew what tomorrow would bring. I became as in Christ a new creature – old things passed away and behold all things became new.  The only thing I knew for certain was that that I did not know what to do but God would help me.  I did not know how he would, but I held on to Him, cast my cares on Him and just stood in the assurance that he would never leave our family nor would he forsake us.

What is Alzheimer’s Disease

According to Fisher Centre for Alzheimer’s Research Foundation, Alzheimer’s disease is the most common form of dementia. It is a neurological brain disorder named after a German physician, Alois Alzheimer, who first described it in 1906.  Alzheimer’s disease is the most common form of dementia, a group of disorders that impairs mental functioning. (Dementia literally means loss of mentation, or thinking.) Currently, Alzheimer’s is progressive and irreversible. Abnormal changes in the brain worsen over time, eventually interfering with many aspects of brain function. Memory loss is one of the earliest symptoms, along with a gradual decline of other intellectual and thinking abilities, called cognitive functions, and changes in personality or behavior.

Alzheimer’s advances in stages: progressing from mild forgetfulness and cognitive impairment, to widespread loss of mental abilities. In advanced Alzheimer’s, people become dependent on others for every aspect of their care. The time course of the disease varies by individual, ranging from five to 20 years. The most common cause of death is infection.

When she left

My mother –  my father’s wife, my sibling’s mother, my children’s grandma, my cousins, nieces and nephews’ auntie, my friends’ sister in Christ – slowly left me frightened and depressed as I experienced living with Alzheimer’s and life in the “valley”.  Yet, even while I was down in the valley, there were many happy moments when I had “mountain top” experiences when she came back to “visit” with us and I thought – “yes” we are going to conquer this thing – and as suddenly as she came, she drifted off again.  Finally, reality set in and I realized after some time that the disease was something we had to live with so I had to get acquainted with it, and so I did the best I could as I went on a journey which moved from known into an unknown, dark world.

It all began in 2007 when we became aware that my mother started forgetting things and then the diagnosis that she was suffering from Alzheimer’s disease which she had up to her death in June, 2012, eight months after my dad died.

The Challenges

It was quite challenging when it started, but my family and I had to quickly accept that we faced a downhill battle. Symptoms included:  she regularly forget things on the stove, packing her things everyday to go home to the place she grew up as a child, talking about her parents and her siblings as though they were alive, messing her pants but insisted that we not tell anyone.  She would hide everything; so many times we were unable to find important things. She was a stay at home mom and a dressmaker – so the kitchen was a regular place for her and she was a great cook.  The main problems we had were keeping her off the sewing machine and out of the kitchen.  She would go to the stove every minute until we had to stop her from going there.  This became a major problem for her and sometimes she would find her way in the kitchen and took out eight plates and started sharing for her husband and seven children. These were among many things she would do.  When the situation went beyond my dad’s ability to cope, my parents had to live with my youngest sister and we had to employ caregivers to render round the clock assistance.  I thank God for my youngest sister and her daughter and know that they will be rewarded for the part they played.

It was indeed one of the biggest challenges I have ever faced as I watched my mother – my tower of strength – become a child once again.  However, through it all, I became a witness to the promise of God that if he took you to it, He would take you through it.  I can say as a family we lived through it and for me there were many blessings out of this challenging situation.

The Blessings

In spite of the challenges, there were many blessings.  Other than the Alzheimer’s disease, my mother had no other illness.  She was even cured of issues she had since childhood.  From childhood, my mother could not see without her glasses and one day after she lost her glasses, we realized that she was seeing very well.  She could not walk on the floor barefooted as she would sneeze uncontrollably; we discovered that as she loved to take off her shoes, she was then able to do so without sneezing.

As a family we had to support my mom and dad and each other.  We had to be prepared to do whatever it took to cope. We were close but became even closer.  All of us had to engage in the process, my siblings, our children, and other members of the family and our friends.

Through it all, I learned to trust God and keep Christ at the centre of my life.  Christ became closer than a brother and my dearest friend.  It required me to strip myself and became totally dependent on Christ.  I had to get to know Him more.  I discovered what it meant to pray without ceasing.  One day I asked the Lord, “Why me?” and I discovered while reflecting one day that as I grew in the grace and the knowledge of Christ, I moved to higher heights and deeper depths in Him.  God was also preparing and strengthening me for the task ahead. Thank God for Jesus Christ; when my strength was gone His strength was perfect.

The book of Ecclesiastes speaks to the fact that there is a time and purpose for everything under the sun. In 2006 I had opted to request redundancy from an organisation where I worked for 27 years.  At first it was not considered but God worked a miracle in the situation and the decision was made in my favour.  I did not realize that I was being freed in order to take on the responsibilities that required attention during the work day for the six years of my journey with caring for my mother with Alzheimer’s and my father who was also ill.

How to Cope

In living with Alzheimer’s, here are some strategies which worked for me and my siblings as my mother’s situation got progressively worse:

• Share the responsibilities – assign every member of the family to handle tasks such as visits to the doctor, pharmacy, shopping, and all the day to day activities.
• Have regular family meetings to assess the situation and make decisions.
• Pray together.
• Even if you have someone to give round the clock to help, assign someone to be on duty whether on a daily or weekly basis to help to manage and monitor the situation.
• Share with others as you go along; it helps you to unburden, it educates them, and they can help each other.

Remember God our strong tower is able, capable and dependable. He cares for us and will NEVER give us more than we can bear.

References

Fisher Centre for Alzheimer’s Research Foundation    Retrieved March 21, 2013 from http://www.alzinfo.org/aboutalzheimers/?mtc=google&kwd=alzheimers_disease&gclid=CP3JxOX3jbYCFQrNnAodaioA3w

Mrs Carole Rowe is a commissioned lay pastor with the United Church in Jamaica and the Cayman Islands.  Her call to ministry was affirmed within a year of her parents’ deaths.