Palliative Caring at Home – the Ultimate Gift of Love
Leon - My Lion King
Facing the reality of a terminal illness is generally a very traumatic time for both carer and the patient.
From my personal experience of caring for my 38 year old son Leon at home, I was always concerned about will happen next in the progression of his illness?
What should I expect and how can I help him to cope and keep myself functioning so that he is assured that I am confident in what I am doing and have his well being before all else.
Primarily so I can keep my promise to keep him at home till his time comes and not in the hospital environment?
I am not going to talk about the practical side right now, I will do that in another article, but more about the emotional support structure that is an integral part of this kind of tragedy.
No book can prepare you for this experience, each and every one will be different and have its own exclusive issues.
Everyone, the patient, carer and supporting family will at times experience fluctuating and sometimes conflicting emotions when dealing with issues of pain, emotional trauma and fear.
In truth I poured over every article I could find for help and guidance. And because I did not know what to expect sadly many times you sort of jump the gun in the process of the things that they tell you to physically expect and the time frame when they actually do occur.
You kind of misinterpret the symptom/emotion you are seeing and your mind and your own fear exaggerate the timing, thereby actually putting a lot of extra stress on your own emotions and coping mechanism.
However, there are things that I learnt I would like to contribute, hopefully to give some other perspectives to others in coping with this heart breaking experience.
My personal challenge came with much shock when Leon was diagnosed only 1 month after experiencing severe back pain, with stage 4 pancreatic & liver cancer and was given only weeks, maybe a month to live on 1st August 2007. (we got 5 months!)
What was even worse was this was only 4 months after he had lost his own little daughter Krystal, at 8 months of age, after open heart surgery and a 5 week battle to live, on March 27th 2007.
We were already in grief and this tragedy of now losing her father, my own son, was just so gut wrenching and unbelievabley raw, that I did not know if I could cope.
After all its unimaginable that one of your children dies before you do, its just not meant to be that way.
There were no real options offered to him, chemo was only for pain relief and after 3 weeks that had affected his white cells, so he was unable to continue.
He could die in hospital or he could die at home, and so he chose to return to his parental home, as that was his place of peace and tranquility and we were able to provide independence for while he had it, and comfort and care for when he needed it.
Leon and his siblings
My Brother Under the Sun - Spirit of the Canyon
Leon - the last 10 years
Leon's appreciation of life.
Leon was the 2nd eldest of my 7 sons and 1 daughter, and our entire family went into major distress. A dad and a step dad, a brother-in-law and many sister-in-laws, everyone rallied around and his life was full of as much fun as we could create in the times he was independent enough to handle them.
Anything he wanted we arranged, from getting his old band together and having a gig at older brother Andre's acreage home , to poker nights, or karaoke nights, his wants were minimal in reality, which made things easy to enjoy and to love and be with him the whole time.
Photo's & video's were taken at every opportunity, even just the simple times when his brothers would call in after work, and just hang out.
He got out of the way the few "thing" types of stuff that he wanted to do as it was minimal as he had no desire to travel. Nor any sort of way out things he wanted to achieve.
He just wanted to do things for his son, with his family and friends and have some money, unencumbered money that was his to do with as he chose.
I managed to find out that he was able to cash in his super fund as it had a terminal illness clause, and for the first time ever he had free money to spend, and he bought things for his son, simple things, like stuff to play in the pool, clothes, and an xbox so they could play it together etc.
One of the most poignant things he did was to go out and buy his son a birthday card for every year right through till he is 23. Sadly he was only able to write in the 1st one, his sons 9th birthday, and the message in it was so emotive, so memorable that Jesse cannot help but admire and love his dad even more as he grows up.
He made sure he gave his son lasting memories of just simple things, having a swim in the pool, feeding the ducks at the local park, playing computer games, so he gave of himself to Jesse as much as he experienced the simple things that he wanted to do, even though he was in excrutiating pain almost the whole time.
He bought his own video camera to record all these events and he and Jesse took turns to create a history for Jesse for the future. I found this extremely touching when I recently looked at this for the first time and at the same time heart wrenching to see him talking into the camera and saying......"how come I am so sick? I don't look sick?"
As we were in the grip of a long standing drought the few times that there was minimal rain, he dragged himself outside to sit in it, and listen to the sound, feel the rain on his face, and he treasured every bird song he heard, sunrise or sunset and the pets in the family.
I would see him trying to live normally and at the same time your mind is screaming with the injustice of it all, and yet you are full of admiration for the way that he accepted his fate.
Even though he mentally and verbally acknowledged that he was in no way ready and would fight for his life for as long as he could.
Of course we did all the kinds of alternative treatment that he could stand, but his appetite faded fast and the ability to eat or enjoy food was minimal.
For both Leon and myself we had already traversed a journey where he had for many years believed that he would not make it to 30. Our joint relief when he did, was palpable and he grew tenfold thriving with happiness and a positive outlook.
In hindsight, it is often found that people sometimes predict that they will not have a long life. Whilst I do not believe that he wished this on himself (and therefore created it), I in fact wonder if inside many people that die young, sometimes just have a tiny inner knowing or intuition. They leave little signs that you see later after they are gone.
He also went through a short phase of believing that God had taken him up on his emotional plea to take him instead of his daughter. He felt that it was ironic, that he too was going to die anyway, even though they had already lost her.
He got over that in time, and just got to believe that it was his time. He never gave up faith that he could fight it as long as possible however.
Of course when given a diagnosis like this is where all people are different and re-act and behave differently to one another.
One of the first things Leon said to me and his siblings, was take lots of photos and take videos whenever you can, because this is the only opportunity you will get.
This is truthfully much harder to do than it sounds, however a great solace afterwards. It helps stop the "what if's" and "did I do enough" guilt, which is all part of the grieving process.
From my son's home caring I learnt what I feel was a very important aspect, in that he wanted to know how he would be remembered, prior to his death.
This is something that I don't think many people are comfortable about and avoid saying/doing in case of hurting the dying loved one.
Its kind of an avoidance issue so that it is not confrontational. But, from our experience we learnt that it was paramount to him.
So based on that, I made personalised professional photo albums, had his picture put on a cups, drink coasters, key rings and created home movies of his life.
We sourced signed jersey's and shirts from his favourite footy team (the Rabbitoh's - South Sydney Rugby League team) and we all wrote him poems and special cards (something I had always done anyway). This way he also knew how we truly felt and we could keep them to eventually pass on to his 9 yo son, Jesse which was his desire.
One of the other things we found was to set lots of little goals for him. The footy final was one and following his favourite team and their matches.
The Australian cricket season and major games was another. He had a love of golf, however never got to play it again with his dad and brothers, so instead they watched it together.
Backing horses that had the word Lion in them, because that was what his name signified, and having some exciting little wins. His favourite racehorse winning a major race, and him betting on it and winning.
His boss Trish who adored him, organised a brilliant outing where he went to the races, into the members stand, and meet the owner, trainer, and the jockey of this brilliant horse Gold Edition (recently retired for breeding) who gave him the biggest thrill and a huge signed framed picture of the horse and jockey. They were the milestone goals that he enjoyed.
Putting up the Christmas tree the first week in December we made into an entire event and filmed the whole process as he did this with his son. I was so proud of Leon for trying to create normal memories for Jesse to have, and not miserable ones, as he always tried to rise above his illness and how he was feeling. I know that having these goals was an integral part of his turning his weeks to 1 month prognosis into 5 months.
Leon loved and cherished every single one of them, and I know they gave him comfort and the knowledge that we would not ever forget him. As if we ever would. But he needed to know.
He and I jointly created an area in the garden where we put a few highly perfumed roses in pots, placed around a beautiful gardenia bush, with some jasmine and he helped me to lovingly attend them during his days of independence.
Eventually he could only be wheeled out in a wheelchair to see them, but they too were an important part of his journey and one that assured him of a special place that he knew we would sit in and meditate in afterwards.
I've now moved them next to the pool which was a favourite place for him to sit and I sit there every single morning, rain or shine thinking of him and his appreciation of the little things in life.
One of the most beautiful things was a small solid timber chair engraved with the words "Leon's Garden" that his younger brother Damon made me for Christmas some 4 days before Leon passed. Sitting on top of it is a beautiful bronze fairy that symbolizes his daughter Krystal.
Leon loved them when he saw them Christmas day and then the next day just hours prior to his coma I wheeled him out, a frail, fragile shadow of the smiling loveable son that my aching heart knew was finally losing his battle. He had clung onto life so that he could see his son open his Christmas presents that he had lovingly bought when he was still independent. And although he wanted to last till Jesse's birthday on 1st January 2008, the superhuman strength he had found finally left him, as he had not eaten for almost 2 weeks at this stage.
He looked at the chair, smelled the roses, gave the thumbs up, and then said the last 4 coherent words of his life "I love you, Mum", which is the loving memory I now have of my cherished son.
I also learnt that while you need to show your unconditional love (for self and for them) you do also have to find a superhuman inner strength (that shocks even yourself) so that it gives your loved one knowledge and security that you can cope as their nurse and meet their needs and keep them out of hospital.
No matter how much grief and angst you are progressing through yourself. Your strength and their safety with you must shine through.
So they need to know you care, but that you can rise above your own pain for the necessary tasks.
They don't want to see you in a sobbing uncontrollable mess however as this saps their own resolve and their own reserves of strength. Many times I would silently cry as I did my chores around the house when he was trying to rest which was so difficult for him as he could only kneel in bed over some pillows, and many times he would come out and catch me, and say "I know when you are crying" and then we would hug and just get on with it, as we knew we had to do.
There are many ways you can still show your grief to them and the best times I found were to talk to him in the wee small hours of the morning when he could not sleep, and to let him choose what he wanted to talk about. It was dark, no facial expression could be seen and like writing an email it sort of allowed for deep inner truths to be spoken out loud. We could even then cry in the dark.
We had many deep and meaningful's at this time and Leon told me that if he was allowed he would come back and make contact with me.
We spoke of fear of death and the progression of the actual act, and based on his worries I was able to find a young Doctor near his own age, who gently explained the likely progression of Leon's condition and how his death would occur when he was asleep and unable to be aroused. This reassured Leon a lot as he was worried about organ failure and he was able to communicate to us via the Doctor, that he wanted us to play him music and to hold his hand right up till his death.
Actually one week before Leon died he was sitting in our large family room with myself and 2 of his brothers, and he asked me, where abouts his cancer actually was in his body, (he was getting a little forgetful at this stage) and he then said that when he died, he just wanted his family to be with him, and that when the time for his funeral came he would understand if any one got caught in traffic!
This turned out to be a very memorable statement, as on the day of his funeral, it was raining buckets and his younger brother Paul had to travel 2 hours from his home, and ended up getting caught on a major bridge for over 2 hours due to an accident and was 20 mins late for his funeral! We commented at the time, how Leon had kind of predicted this, and fortunately we were able to delay the funeral so that all his family were there, as his 6 brothers were his pallbearers into the service, which was as special as he had wanted it to be.
He even picked his own music and left it in his room about a week before he passed, beautiful loving songs, that he enjoyed. He was himself a beautiful singer and poet and that is one of the things I miss most apart from his beautiful smile and engaging giggle, is that heart felt soul that he could somehow express with his voice.
I cannot begin to share how courageous this beautiful loving young man was, and how he did so much to lift others right to the end.
I am honoured to say that we were able to do all of his wishes, and he passed with my right hand on his heart and with 3 of his brothers and I holding his hands, stroking his head & face till I felt that last beat and at that moment in time all I could then do was utter deep guttural wail's of pain and loss that just erupted from within me. A pain that is like nothing I have ever had, or ever want again.
My own loss, his loss of his future life that he had looked forward to sharing with his son Jesse in adulthood, and sadly at the same time feeling relief that my darling son who had borne so much without one complaint, was no longer in pain.
It's a true contradiction, but a necessary one.
I know in my heart, nothing better could have been done for him in a situation we had no ability to ever control, except to give him peace and help his journey with the unconditional love every member of his family showed him. No one in this world could ask for more when they die.
In Leon's own written words to his older brother:
"We will be dead for eternity so there is no rush to get there"!
"Since I've found out I'm dying, I've been finding peace and love in all I do.
Life has been amazing for me.
I've done plenty of things I wanted to, so I'm going to dwell on all the
things I've enjoyed as opposed to trying to complete my life with
ambitions I didn't get to complete.
It's all good"!
We all honour you Leon, for being an uncomplaining, courageous and loving man, and a true inspiration and legacy for your son Jesse.
We salute you!