Making a Difference.
by Carole Sandberg.
Life, as we all know, is so very precious with each moment unique and special, never to be repeated exactly again.
Our lives certainly can have mixed blessings, however the bottom line is our attitude towards everything – how you perceive wins and challenges and how you deal with them.
Looking back specifically over the last seven years, (it is now three years since my husband, Sid passed away), I realise one of my challenges was accepting there was nothing I could do to improve my husband’s health. I found myself wishful thinking at times that things would improve and we would still be able to cross some of those things off our bucket list, sharing them together. But, this was not facing reality, and when you are someone’s carer, facing reality is a serious necessity, as is endeavouring to maintain some sense of positiveness even when things are dire.
By the time of my husband’s passing, he had acquired a multitude of major health issues combined with lots of medical emergencies. We were in and out of the cardiac unit at North Shore Private Hospital so often that each of our arrivals was greeted with warm” hellos” by all the staff who had almost become our second family.
By choice I became his prime carer with all that this entailed. In some ways I was fortunate in that I had watched my sister as prime carer for our parents, not realising at the time just how much practical knowledge and compassionate understanding of what was required I had absorbed during those emotionally charged times. For the learning I received, I will be forever grateful because it helped me immensely with my own personal caring journey.
It certainly is not an easy journey, watching someone you love deteriorating before your eyes. It can be so frustrating, having to accept you can’t stop the progression of the situation and it can be quite a challenge keeping that smile on your face and remaining positive when you know time is running out. All you want to do is sit in a quiet space and cry your heart out at your impending loss. However, by staying positive, having that smile readily available as much as you can, and being the best you can be is a real gift for all concerned, indeed for yourself as well. That doesn’t mean to say I was positive all the time – quite the contrary. There were a few times when sleep deprivation, anxiety and other emotions took over and I would trip over myself big time. Unless you have experienced this particular journey, it is hard for you to imagine it. At times, you can feel grumpy, perhaps impatient and go through some self recrimination, but the bottom line is you just need to accept this is where things are and pick yourself up, dust yourself off and keep going. You need to remind yourself that you, too, are human, with lots of foibles, and that you are doing the best you can which is all anyone can ask of anybody. If you are fortunate, as I consider myself to be, you will have family and friends there to offer you some emotional support- what a blessing this can be at such a time.
Being a carer is a profound experience with lots of fast learning curves. There were times where my thoughts evolved around what a privilege is was to be there, to do what needed to be done, to be able to give support at the end journey of someone I loved. There were times when I questioned why this was happening. And there were times I coped admirably and other times I questioned my ability.
Once my husband became too ill to deal with all the bureaucracy that seem to twist us in occasional knots, I had to take over all responsibilities pertaining to our lives. Naturally, by the time of his passing, this meant I was fairly conversant with everything that needed doing ranging from all financial and legal aspects, our home ( arrgh, I ended up having to take out the garbage – that wasn’t in our marriage contract!), car details, insurances, health coverage, memberships, indeed the multitude of things that we have to deal with in our lives many of which we take for granted. During the last few months and immediately after his death it was clearly apparent how important it was that we had previously organised the legal aspects for being each other’s power of attorney, enduring guardians, updating our wills, making decisions re burial, advanced care directive wishes, and all those topics one would much prefer not having to face – ever.
Just one week into trying to cope with my loss I was hit with the first lot of bureaucratic red tape and realised I needed to re-gain some focus to deal with everything. I was grateful I knew what needed to be done. However there was one piece of information I had forgotten to obtain from Sid, and that was his Facebook password. You have no idea the stress and aggravation connected to trying to have someone deceased removed from Facebook. To say it was not easy is the understatement of the year! And we won’t go into some utility companies who insisted on talking to the prime name on the account even after being told many times that he had passed away!
I have always lived by the adage, “if you come up with a lemon, make lemonade.” This was no exception. About six weeks after his passing, and having dealt with a multitude of red tape, I had a major epiphany. There must be endless adults out there who will not be as “prepared” as I had been; People who were going to go through unmitigated hell trying to sort through the bureaucratic red tape, being ignorant of where to find documents or what to do with them, not knowing access codes, passwords, funeral wishes, memberships, etc. – the list is endless. And I won’t go into all the minutiae of daily living much of which we take for granted when someone else is dealing with it. Consequently, for those left behind who are not conversant with everything, instead of being able to sit quietly and allow the grief process to gently flow, they might find themself with added unexpected pressure, anguish and stress due to lack of information.
After this unexpected insight, I decided to grab that proverbial tiger by the tail, and write a book based on my learning experiences over the last few years. The context would be to help others through this difficult passage by showing them a path they could take that would stop unavoidable stress sometime in the future, and create peace of mind now, right now.
Following discussions about the concept with a few close friends and my family, I felt encouraged to start writing. The book title brainstorming session with my son, David resulted in the name The Gift of Preparation being born, and I would like to think my book is indeed a gift, a gift of love.
I wanted it to be an easy read, written in a very personal style because the subject is such a personal one that needed connection with the reader at a meaningful level.
As I wrote, there were innumerable times I found myself sobbing my heart out, blinded by my tears of grief, and sadness. Many were the times when I had to just stop and sit in front of my computer, quietly letting my emotions run their course. In looking back I realise what an incredibly cathartic experience writing this book was for me, and for that I am grateful – actually it was a real blessing. Basically, I wrote the book in a few weeks after which a few months went by filled with re-writing, editing, minor panic attacks, and continuing to ask for feedback, which resulted in a few more items being included in the book’s content that I hadn’t thought about.
It was during my writing process that it hit me again just how much we all take for granted, and the innumerable number of diverse responsibilities we all deal with on a day to day basis. In speaking with a neighbour who had lost her husband some months prior, she shared how her husband had looked after absolutely everything. She was still in shock and quite traumatised, more so because she hadn’t realised just how ignorant she was about so many aspects of their lives, and the incredible stress she suffered accordingly.
Sharing the outline of my book with another friend he said he couldn’t wait for my book to be available because his elderly parents had been avoiding the subject of one of them no longer being there and he had hopes that my book would open up this psychological block and help them prepare in a practical manner which would then create much needed peace of mind for all their family. A colleague who had lost an adult child shared the mess they had to wade through because they had no idea of all their daughter’s information and how that impacted on their grieving and their lives.
Hearing so many stories likes these magnified the importance to me of making my book a reality as soon as possible. Obviously, I was confronted with lots of major decisions requiring my attention.
After many sleepless nights, I decided to take the plunge and self publish, as I preferred to be in total control of the end result (happy to admit I am a bit of a control freak!) . It was a big decision because of the finances involved, however, in hindsight, I am glad I chose this road.
The second edition of my book will be available shortly, because excitingly, I am almost out of first print copies.
My mission is to make a difference to as many people as possible through my book. Every sale that comes in brings a smile to my heart, because I know this is one more person I have helped.
Self publishing for me, also meant self marketing. I have spoken to a number of diverse groups and have had some media exposure, one of them being an interview with Ita Buttrose on Channel Ten’s Studio You. Ita has kindly written an endorsement of my book for the second edition. With the second edition coming out soon I now have to knuckle down on an even higher marketing level in order to accomplish my mission on a grand scale.
The Gift of Preparation is for all adults, regardless of age, sex, marital status or current health – a great gift option for yourself, your family and friends.
I have had one forward thinking very caring financial planning company purchase hundred of books that were given to each of their consultants who in turn have bought books for their clients, so the ice has been broken at the corporate level. Now I hope to attract more corporations and organisations to realise the unique value-added service opportunity The Gift of Preparation offers for their clients/customers/members and of course, by gifting or informing them of this book it will help them raise the bar on their professional, caring image – a win- win situation.
I live in hope of continuing to make a difference.
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