Jessie has asked me to write a little of how I feel as a parent who has unexpectedly become her part-time carer.

Jess: The below piece was written by Noli, my mother and one of my parents. This is her thoughts on the Journey through this Lupus life, my Lupus life and how it has brought her from a mother of three entering the ‘empty nest’ phase of her life, to wading through the health troubles of one of her children (me). I only asked for ’500 words or so.’ But here you go.

Where to begin?

Aristotle is attributed with the quote “The only permanent thing is change.” I am often amazed at the rate at which our world is changing round us but change itself is essential. My own motto now is that “Life seldom turns out how we think it will.” Unconsciously, I thought our lives would take a fairly straight path. A few bumps along the way, but generally taking a similar and more contemporary direction to the generation before us. We would grow up, probably marry, maybe have a family, possibly grandchildren, we would work, travel some, retire, relax and mellow into old age if we are very fortunate. Of course, there is the chance of either partner having an illness at a younger age and all this not necessarily being fulfilled. (My own father passed away aged 59, my mum at 86, a bonus in I thought.

In the Beginning

Jess, in hindsight, has presented with symptoms of Lupus from birth (maybe even my pregnancy). After a series of significant illnesses in her mid-to-late teens, she was diagnosed with Lupus (Systemic Lupus Erythematosus or SLE) around the time of her 19th birthday. I recall that I was more than upset than Jess at this time, I think there was more relief on her part. She was, after all, experiencing spasmodic painful and confusing symptoms and she now had a treatment plan to relieve these. So began the Lupus journey, the unpredictability, the twists and turns where it will strike next, how it progressed with treatment, while all the time, “You don’t look sick.”

As Time Progressed

As parents you naturally wish that it was you, not your son or daughter, that is faced with this challenge. I know I mourned for the life that I had hoped for Jess to enjoy. But at the same time, I knew that there is a fabulous medical team looking after her, very effectively. These doctors are very committed to monitoring Jess’s health and providing effective treatment and support. Jess has a ‘team’ because she has Cerebritis issues that have been a challenge to treat.

(Jess: Cerebritis is an autoimmune disease in the brain and central nervous system, thus crossing Immunology and Neurology specialties in medicine.)

Remaining positive is essential to coping but at times it takes a huge effort. We have learned to live life in short bursts of time: today, this week, this month. For me, I think about what I’ll do even next year. I know Jess does not think like this, six months is her limit. The first years of living with (her) Lupus were relatively normal. When the Cerebral Vasculitis (Lupus Cerebritis) came to visit we lost much of the daughter we knew and gained a girl with a different personality. She couldn’t talk and communicate effectively, her temperament was altered, she had significant “gaps” in her memory and ability to recall plans, dates and people, both recent and long-term. Added to this was the lack of sight and coordination on the left side of her body. Thus, we have come to know the new Jess. Jess was previously quite coordinated, aware and able to control the world around her. Now it is a different story. This is where our need to be part-time carers began.

Maybe support person would be a better title? Many times, our support is required in an emotional capacity rather than a physical one. At other times it is both areas.

Did we see this coming? Probably not.

Are we pleased to be able to support Jess? Of course.

Is it confronting? It definitely can cause anxiety.

Will we still be aware of, and cater for our own needs? For sure, we must.

Will we aim for independent living? As much as possible. That is the dream.

We are very fortunate that we have the means, network of family, friends and support that we have. We are very thankful that we are blessed with as much as we have. We have two absolutely wonderful sons and, with a forthcoming wedding to look forward to next year, a daughter-in-law. The future is rosy.

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