Carers Loft

My Journey As A Carer Has Evolved Through The Years – Come With Me And Let Me Show You How I Turned A Traumatic Time Of My Life Into A Positive Experience.

 

What do single motherhood, Leukaemia, Trauma, Carer, Health Science, clean living, natural healing, alternative medicines, energy work, essential oils, vibrational therapy, frequency work, self help, art and craft, stress relief techniques, a love of nature, a wellness business, blogging, a wish for financial freedom, grandparenting, homeschooling, and a dream to live on a self sufficient homestead, maybe even off-grid, all have in common? Me of course. Me and my continuous and ever changing journey to where I am now in life and to where I will end up.

 

Wow! Who could have known how life would change and evolve through the many years I have been a Carer for my daughter, who is now an adult with her own children?

From having to go through the trials and tribulations, and unimaginable fear of loss, when my daughter, at just three and three quarter years of age, developed Childhood Leukaemia, to what our lives have become today. Back then I could never have imagined where it would lead. If I’d had a normal life, I still probably wouldn’t have imagined where I’d be at in the future.

 

What did this Whole Leukaemia ‘Thing’ Mean for me and my Daughter?

 

Well, I’d be lying if I said we didn’t have a really rough time of it. Firstly dealing with the horrible medical treatment and side effects my daughter endured for nearly two and a half years, and how awful it made her feel. There was also the isolation and having to spend time in a hospital bed for long periods of time, not seeing anyone she knew except me. The 3 am drives up to the hospital around 1 hour from my home at the slightest appearance of a temperature, and the guaranteed minimum 10 day stay in hospital each time while they did test after test to try to determine the reason for the temperature. Oftentimes they could find no cause. The chemotherapy, lumbar punctures, bone marrow aspirates, the porta-cath operation and subsequent infection of it, the blood and platelets transfusions, not to mention the reactions to them and the effects of the wearing off of Phenergan. Sheesh, who would have known that climbing the walls was a side effect of a medicine designed to relax a child and make them sleep?

The endless blood tests to check her full blood counts, platelets and immune status, being held down for treatments when she fought tooth and nail against it, and the time spent away from family and friends and sometimes myself when the hospital tried to tell me to go and stay somewhere, all contributed to the long term impacts and the effects on her life. Not to mention after already spending 16 days in hospital and being allowed to go home, then having to return the very next day to receive 2 zig injections in the backside at the same time, all because she had made a little friend who was also sick, and we happened to visit her hospital bed on the wrong day and had been exposed to chicken pox.

 

Not to Mention The Loss!

 

This doesn’t include the loss of our way of living, our home, our friendships, my job and my income potential. We lost opportunities to meet our social needs and consequently felt very isolated. We ended up having to go to expensive corner stores just before closing so we could get our food shopping for the week, to avoid the potential for infections if out in a crowded public space.

It was certainly no picnic. Then there was having to contend with a whole bunch of long term physical and psychological effects of the treatment. Finding that once she was at school, there were problems with social skills and some schooling and this introduced a whole new set of issues. Apparently chemotherapy was not meant to cause any brain damage, but if that were true, why was I warned that a side effect might be that she could have problems with Math for example, in school? Bearing in mind that there most certainly would have been some lasting feelings of resentment towards me as her mother who was allowing these strangers, even helping them by holding her down with them, to her three and three quarters year old brain, to perform all manner of nasty procedures on her.

 

While We Would Hope It Does, I Assure You It Does NOT End With Remission – Understanding and Accepting this is Key!

 

Believe me after all of this, it still does not end with remission as most people might think. For anyone going through anything remotely similar, be prepared for some hardships along the way, but also have hope. Having said that, I am very grateful to have reached remission when many of the other children in our hospital ward did not and I still, to this day, mourn their losses. But even though we went through what we did, there were still some fantastic times spent with charities like Camp Quality and the Camp Crystal crew. These were the few bright stars in the dark skies we were living under.

A long string of issues faced us from the moment of her diagnosis, to her remission, and has continued to plague us into the future, some 25 odd years later. Even only 5 years ago we were still only just beginning to realise the full extent of the damage done, and begin the recovery process from all of the fallout. Looking back, I wish I had a crystal ball to have predicted what we would end up dealing with and then perhaps I could have saved a lot of heartache with some early interventions. Allow me to be that crystal ball for you if are fighting this fight at the moment. But also use it to see how life has brought many blessings too.

 

 

It occurs to me that the oncologists really should have known something about how the treatment might impact the children down the track, I mean how could it not? If they were able to give us a percentage survival rate and a prognosis, they must have had enough children through the door to make a note of the implications. At least offer some psychological after care, or perhaps put us in touch with other supports, but we got nada, nothing, zilch in terms of support or information as to the long term implications of this life that had been turned upside down.

Healing From an Unacknowledged Side Effect is Possible

In fact, any time I mentioned that I thought my daughter was being psychologically impacted, I was met with silence or sensed that I was being considered one of those ‘neurotic mothers.’ I was never taken seriously, or they simply did not want to know. It was almost like in Harry Potter with the “he who must not be named” scenario, except it was the “side effect that must not be named”. Get the kid well again, but too bad if her quality of life is somewhat less for the troubles. It’s not our problem once we get them out the door, one more successful walking chemical time bomb. Never knowing if they will go off, or if they will be continuously exploding over and over again, or how long it will take to defuse them. Yep, they may need major detoxing and major psychotherapy, but they don’t tell you these things, you have to magically work everything out for yourself and then hope that you are believed when to all appearances, your child looks, acts and seems quite normal on the surface.

Healing Can Happen, But You Can’t Force It! It Will Be on their Own Terms and in their own Timeframe.

But healing can only happen by their own choosing, when they are ready. You will never be able to force it upon them or coerce them. It is their own choice to heal. I’m glad my daughter made the right choice even though there were times where I wondered if she ever would. My daughter is one strong and wonderful human, to go through what she has and to have spent so long working on herself. I was persistent in getting the help for her, but at the end of the day, she had to do the work herself. So proud of her for not giving up.

 

 

So I was left to muddle through it all alone once cast adrift from the medical system. They may as well have said “Thanks for coming, don’t let the door hit your arse on the way out”. As they say, being forewarned is being forearmed and boy do I wish I had that. I could have done so many things differently, I could have helped in ways that were useful instead of detrimental to my daughter. Yes, while I have been there through thick and thin for my daughter, believing all the while that I was helping her, there were times when I wasn’t helping at all just making matter worse. I just didn’t know it. Having more information from the outset, might have had a different outcome for my daughter. But it is what it is, and I’ve done the best I could do with the little knowledge I had and now we are finally starting to see some successes in life.

It’s been a very long journey to get where we are today, but where we are today is amazingly hopeful considering where we have been. It’s not all peaches and cream everyday, and it damn near destroyed our relationship as mother and daughter, but we are so much better off now.

To be totally honest, I believe that this life has guided me in ways I never would have thought to go myself, and it makes for a much more interesting life than what I probably expected in different circumstances. But I guess that’s life really, isn’t it? You start with a clean slate, if you’re lucky you might have some ideas on where you want it to take you, but for the most part, it’s a mystery and oftentimes you don’t end up following a laid out path anyway.

I hope I can give you a glimpse into what to expect if you are facing our situation, but the same can be applied to just about any circumstance. l also am keen to present to you how such a devastating event became a tool for growth and development and in the end shaped me into someone new, my daughter too. So much so, that I can see many blessings in the chaos, disruption and fear we went through.

The Battlefield

 

 

Over the years I have had to watch my daughter decline through a slow progression from a child with deficits in social skills, memory and problem solving skills towards Complex PTSD otherwise known as Developmental Post Traumatic Stress Disorder, which severely impacted on her ability to cope with even the simple functions of everyday life. I was screaming out for help for years, with that mother’s knowing that something wasn’t right, only to be told over and over again that there was nothing wrong. In all fairness, she had learned to hide her feelings well over time, and it was difficult for anyone to get a true reading on her, but eventually, things got worse and worse and someone finally took notice, but not before the impacts became long lasting and difficult to get well again from.

We finally found a psychotherapist who specialised in Complex PTSD, not that we knew this at the time, and finally got started down the path of recovery. This is not an instant fix, it takes time and while she is much better able to cope now, she is not completely healed yet. More than five years on from the diagnosis, countless sessions and many neurofeedback sessions as well, and the healing is still going on. But we ARE healing and I think I can safely say we might even be almost fully healed now. There are many options for support available. 

Just to name a few of the battles we faced together;

• Mental Illness
• School problems
• Being bullied
• Exclusion
• Lack of emotional regulation
• Complex (Developmental) Post Traumatic Stress Disorder
• Adult ADD/ADHD (Attention Deficit Disorder)
• Learning Difficulties
• Social skills, problem solving skills, and memory issues were all heavily impacted
• Repeating the same patterns of behaviours and achieving the same bad results or consequences and not learning from it
• Distorted perceptions or clouded judgment
• Survivors guilt
• Risky behaviours
• Poor choices
• Being taken advantage of
• Being led astray and potentially into dangerous situations
• Severe emotional distress at situations being dragged into
• Social misunderstandings and inability to pick up on cues or read a situation
• Judgmental people
• People voicing opinions of how they thought I should handle situations and completely overlooking the disability aspects and whether it would be detrimental to my daughter’s emotional well being and even safety.
• Ignorance or non-recognition of their being a disability or disorder.
• Continual opinions and suggestions of others to kick her out of home
• Higher expectations that could not have been met and the feelings of inadequacy it brought.
• Domestic violence
• Anger, so much anger
• Delayed maturity
• Avoidance
• Addictions, potentially cigarettes, drugs and alcohol.
• Suicidal thoughts and actions
• Daddy issues and loss, having grown up without her father around much
• Feelings of abandonment
• Rebelling against the system
• Friendship and relationship failures
• Financial hardship
• Stress, stress and more stress
• And more

Most have been overcome over the years.

Let Me Bring You Hope If You Are Going Through What We Went Through Or Something Similar.

I have always been able to find the positives in a situation and while our lives seemed bleak at the time, I now see our journey as a blessing in disguise. Because without these trials, I wouldn’t be who I am today, and that person is a long way from where I began. I’m a stronger person and I can see a lot more clearly than I was able to in the earlier days.

I am still on this journey and I always will be I suppose. It’s the journey of a lifetime. But I do hope to be able to give you some light at the end of the tunnel and ideas. You are all on your own individual journey, from wading through the quagmire, to a stage of reclaiming your life, recovery, or just trying to find your way to move forward from the place you are in right now. There is hope, and I would like to help you find it too.

Into this mix, I also help look after my 3 grandchildren, soon to be 4, who with their mother and her partner, all live with me. We are homeschooling and I play a large role in teaching them all. I was also caring for my elderly mother until she moved into a high care nursing home about 2 years ago. Some of the time since 2000, I was also caring for a sister who was ill as well. My daughter has recently been having some other health issues too, and my Carer role suddenly increased again as she needs a little extra care now, when it was just starting to reduce a little. It would be a dull article if I didn’t proudly show them off here with a photo or two. I love my girls, they make me so proud. 

Self Expression Is Healing

 

At the end of the day, I would like this to be a place for me to express myself in various ways so that I may further my own healing. Please give consideration to using the various forms of self expression there are to begin your own healing journey. I use writing this blog as one form of self expression as a way to off load, but also as a way to tell others of things I have discovered. Perhaps you might choose to do the same.

It is my desire for Carers Loft, or my Facebook page or other social media etc,  to be a place to discuss the problems we, as a family, have faced, any diagnosis or non-diagnosis, the effects it has had on us, conclusions we have drawn, insights, hopes, goals, experiences good and bad, tools, resources, healing ideas, therapeutic ideas, expressions of feelings, successes with things, plus some general chit chat to lighten things up a little.

 

I Was Stubborn Trying To Do It All Myself. My Word of Advice? Don’t!!!!!!

I would like to end this article by urging you to never feel that you shouldn’t ask for help. I have been that person, due to having to deal with it all alone because we had no diagnosis. But I wish now I had asked for help sooner and not tried to do it all on my own. I have been very isolated because of the lack of knowledge and understanding of my daughter’s condition, but I am reaching out now to plead with you to ask for help so that you do not have to endure a life of isolation. Get in touch with me if you need someone to talk to, or want to be part of a group that support each other.

We have moved forward, seen many changes in our lives, and are beginning to live a more fulfilling life now. Please read my story here to briefly learn all of the ways of how I changed this negative experience and turned it around into a positive energy and amazing gain of knowledge, skills and spiritual awakening. There will be more details given throughout this blog, but this is a great place to start to get you on the path of positive vibes.

Until next time, Thank you for reading and may joy and peace find you every day.

Ange