In my experience I've noticed that people with terminal illnesses and older people can be quite upset by the legal responsibilities added on top of their situation. It's a load of new things to learn when we are already feeling challenged by dealing with our health, work, home, financial and family issues. It's an 'in-our-face' reminder that death is inevitable, and that it's coming our way in the not too distant future.
A few years ago my mum was ill with pancreatic cancer. It was already stage four at the time of diagnosis, so it was time for her to get things organised. Power of Attorney, Medical Power of Attorney (Enduring Guardian), Will and Advanced Care Directives were suddenly on the list along with medical appointments, home care arrangements, seeing family and friends, sorting out the house etc. – and suddenly it seemed like there was a lot to do! I'm sure many people can relate to this. But hey, aren't you sick and dying, not feeling like racing around doing new scary stuff?!
We have been so conditioned to fear death in our society, as if it is annihilation, an absolute end of one and only one life which we suddenly realise we have not honoured to the full, not given our all to.
Up come regrets, and it's too late to do anything about them. We worry about the things we've done wrong, the lies we've told, the choices we've made, what we've withheld. It is too easy to forget about the love and light we have brought to the world. To appreciate ourselves is too unfamiliar, and to regret, judge, criticise or blame seems to come more naturally. Oh yes we've been conditioned!
However preparing for death is a great time to wake up and decide to let go of all the things that have held us back, to take a step up into actually claiming, living and appreciating what we always knew deep inside that we are.
If facing death is not the time to do this, when is the time? We are presented with a great opportunity, especially if we have a bit of time to work with before we pass over. It is very liberating. People I've known with cancer or other terminal conditions have said to me how easy it suddenly becomes to let go of stuff: attachments, emotional baggage, fears, grudges, inadequacies, material possessions, beliefs... they can all be cast off like the crumpled old skin of a caterpillar when it's preparing to turn into a butterfly. It can (and probably should) take time - like a slow blooming flower, to allow space for one to adjust, grow and learn with the process.
Advanced directives with Mum
This is the way it happened for me and Mum. It wasn't an incidental process. We decided to do it actively together. My brother and I obtained information on all the bureaucratic requirements and sorted out the best strategies to use in handling them. My brother did a heroic job of phoning, emailing and record-keeping, and being on call any time Mum needed his sage advice. My sister, living remotely and very busy, spent lots of time on the phone supporting Mum. Mum had fears and concerns like those described above, which are shared by most people, and at first she had difficulty approaching the subject. It was easier to 'just not think about it'.
Some progress was made, but the Advanced Care Directives were the hardest to confront and hence this is where close personal connection was crucial. With the support of love, detachment and stillness, the process was reduced from a scary bogie to something to face without fear, something to commit to and enjoy as much as possible. I would go to visit Mum in the nursing home and we'd sit together on her bed.
We had 'deep and meaningful conversations' about death, dying, the afterlife, beliefs, relationships, life choices, energy and priorities. The legal forms were nearby in case we wanted to check a question, but I was able to help Mum let go of allowing them to dominate.
I took responsibility for my role in assisting Mum in her process. After all I've seen in my life, I made a firm commitment to not go into selfish emotions, reactions or fears, nor pressure her or pre-empt her ideas, but to hold a steady, respectful, detached yet engaged and loving presence for her. Thus she could focus on herself, without worrying about anyone else's opinions. Mothers do so allow themselves to be distracted away from their own needs by worrying about other's opinions, and worrying about their kids and everyone else in their world! But now Mum could let go of all that as best she could, and settle into putting herself first. My brother and sister were also stalwart supporters, giving Mum space to deal with her stuff and being there for her whenever she needed to ask questions or 'download'.
In our 'deep and meaningful' sessions, I would ask Mum some uncomfortable questions, 'reading' her responses and neither pushing too hard nor letting her slack off and avoid facing the task. Some of the questions that needed to be asked were:
- What if your illness progresses faster than expected?
- What if you become too ill to move about or care for your own bodily needs?
- What if you become unable to tell people what you want or don't want?
- Or even unable to reason at all?
- How do you really feel about dying?
- How do you feel about your physical body and what is done with it after you pass over?
- What happens to you after you die?
-What would support you to feel that death is a natural part of life and something you can take responsibility for, and even enjoy?
- What do you want to do if somehow you get through this and survive?
Plus specific questions about medical and hospital care under the present and projected circumstances.
I made it clear to Mum that she did not have to answer these questions immediately or tell me the answers - they were for her - to ponder on in her quiet moments. She would go ponder on her own, find the truth within herself, read, discuss with other family members, friends, hospital staff and church fellows, for however long she needed.
She committed to tuning in to herself to become clear about what really mattered to her, how she felt about 'the big questions', and what she preferred to do about them.
Then we would get together again and continue on from that new platform, taking the conversation deeper. We would go over the questions, and the answers would come out and be expressed much more easily. It gave Mum a sense of empowerment with the process and ownership of her life and death. She had time to learn, sort out her feelings and come to a place of acceptance and yet active involvement in her preparations. She also increasingly appreciated herself, her awesomeness, and the value she had brought to the world. This had never been easy for her before.
As we went through this process over a period of months, I could sense her fears falling away, her clarity increasing, and a level of acceptance and anticipation emerging. She began to look forward to her 'next great adventure' - passing over!
Eventually, armed with forms and guidebooks, we set to work filling in the practical details. We also allowed the space to do this gradually, interacting with the pondering and discussing process. It was no longer difficult to face. And I learned a lot that would help me with sorting out my own Care Directives.
By the time Mum's passing was imminent, she was 'all dressed up and ready to go' and the amazing final moments make another whole story.
Often there's a sense of resignation to death and paperwork, instead of the beautiful process of claiming this milestone in life.
Unless death is immediately imminent, doing Directives need not be a rushed, they need not be a stressful 'one day event' - it can unfold gracefully over a period of time.
Wouldn't it be great to gradually get all that sorted out while you are still young(ish) and healthy, expecting to be around for quite a while? And allow the process to grow and change with you, as you mature and your ideas change?
Then instead of the shock of 'all that strange stuff to do' when you are seriously ill and/or dealing with the prospect of dying soon, it is simply continuing the flow of a process you have claimed and feel capable of handling without fear.
It helps to talk about it, overcome the reluctance to talk about it, break down the fearful negative connotations of death, and change the picture we have of death.
Instead of fear, give-up and contraction, we can prepare for death in a completely different way with joy, activity and expansion.
It can bring us back to responsibility and allow us the opportunity of a new way to look deeply into ourselves, ponder the big questions and find out what is really important to us.
We can let go of imposing rules and pictures and feel the truth in a way we have never felt before.
It can be a great opportunity for deepening personal relationships, opening up in a way never before experienced, expanding to a new level of love and understanding that benefits everyone.
It can be like a flower slowly opening or a hard-working caterpillar now shedding the last old skin and going into a beautiful, still chrysalis before the great emergence as a winged butterfly – like a person at last clear and free to leave this body and rejoin their soul.
And thus, the cycle continues …
Dianne T., Australia
Note: for more information on completing end of life paperwork, click here.