Caring for a terminal person is something that in not a part of anyone’s knowledge unless they have done it in the past.
There are no TV shows, radio shows, news reports, general conversation about how it is done.
It is a totally foreign concept ..
it’s like winding up in Siberia not knowing the language, culture, road directions etc.
When a child is to be born, the parents and extended family joyfully spend months looking for furniture, clothes, accessories and spend many hours coming up with a name. When they arrive, many “life” decisions are simply dealt with .. where to live, what size of house, whether to shift, upgrade a car, what sort of car .. then the decisions move to what school, which transport, what outside activities and hobbies, what clothes, what holidays, which college, driving school, which career, which friends, what “extras” to get for the home – teenager retreat, big TV, swimming pool, pool table – then everyone happily plans for their 18th, 21st, engagement and wedding celebrations .. and it is all joyous. The parents then plan where to move to downgrade, how much super and investments to have, where to holiday, which car to change to .. all these decisions are approached with enthusiasm and thoroughly researched.
But when it comes to “end of life” decisions ....
- who has gone around the nursing homes and selected which “high- care” facility
they would like to go to should they develop Alzheimers;
- have they considered the reality of their children totally controlling their assets and their personal care,
- have they talked to their children about the specific aspects of quality of lifethey would like,
- have they ensured that their home is suitable for adapting to wheelchairs and ramps should the time come ..
- have they shown, by example to their children, caring for their own parents so that their own children
will know exactly what to do ..
- Have they gone around to funeral homes with the same level of interest
as when they selected their home and their car but this time to choose the place
for their final service and burial / cremation.
All those issues become a reality for everyone
and in some respects are more important than a lot of other decisions during a person's life.
Why leave the most vulnerable and important part of your life to chance?
Fear of the “unknown” is what stops people caring for older people.
One of the major fears is the incontinence & personal hygiene issues for a person who was once your parent.
We do it for our young children .. when we need to do it for older people,
all it takes is a shift in perception that it is just a part of living.
There is much assistance from doctors, hospitals, the government and chemists to solve those issues.
It is the aspect of “fear” that needs to be addressed.
That’s why I put the page about the Brisbane City Council’s G.O.L.D. programme on this website.
("Growing Older Living Dangerously")
That programme goes a huge way to overcoming all sorts of fears for all ages over 50
which is the time of life when we are usually called on to care for parents
Once you experience a fear dissipate and have it replaced with exhilaration,
you gain courage to face all sorts of other fears – not just in the adventurous sense.
If Councils or Governments invests in those sorts of programmes, the dividends are huge in terms of later life ..
Dot didn’t take up a place in a hospital which would have used a bed & resources for someone who really needed it.
By remaining part of the community, other businesses gained more income
and we both gained a limitless amount of beautiful, humbling, inspiring interactions with strangers
and a wealth of incredible memories.
What defines “life” is being part of it.
That is important ...
"What defines 'life' is simply being a part of it !
In a nursing home the person is withdrawn from life.
There are many situations where a nursing home is essential because of a person’s health but until that time,
it is more fulfilling for them to be able to see simple things such as trees, the sky, traffic, the huge variety of people in the world (young, old, wild, sophisticated, funny), even to sit in traffic (listening to great music makes it a pleasure),
water flowing down a creek, boats sailing on the ocean, shops with their glittering array of so many things to look at,
going into an icecream store and see the variety of flavours & toppings and enjoy the experience of eating it.
Hearing birds, the chatter of children, the sounds of thunder and rain
.. they are the sensations that make up our life .. sight, touch, hearing, awareness.
Notice the small details of life
Cost is another factor for people in the terminal situation .. but there are so many things to do that are low-cost or free.
One of the beautiful memories I have is of taking her for moonlight walks around the block in her wheelchair under a full moon and seeing the owls and possums, feeling the coolness of the night air, the fragrances of the blooms, one time even stopping to talk to another elderly lady .. all I did was think of the idea .. the GST on the concept is all the other beautiful things that happen that can’t be foreseen.
Another was just pushing her to the creek behind us (photo on front of website) .. and initially just showing her the creek from the top of the bank because it was a rough, steep track down .. but then the
fun & adventure overtook and we had a ball getting this “on-road” wheelchair down a 4WD slope .. laugh a minute for both of us !
When I got to the bottom, it was beautiful hearing the sounds of the water over the rocks, the freshness of the air etc
but I did have the thought .. “How on earth am I going to get her up again?” ..
I have a dud leg myself.
At a pinch could have put my arm around her and slowly edged her up, sat her at the top
and gone back for the wheelchair but as I’ve said before,
if you have the intent to create something beautiful (the power of intent) for someone
and it comes from a pure place, the answers will always fall into place.
A couple of young primary school boys came by at the right moment and joined in the fun of 4WDriving a lady in a wheelchair to the top. Only realized much later that that memory will also stay with those boys, (whom I didn’t know}
and maybe when their time comes to care for someone, they’ll draw on that fun, shared experience.
We did so many other “free” things such as:
- many times just driving to a particular spot on a mountain,
parking the car and just listening to a valley of bellbirds & whipbirds;
- sat by the ocean having fish and chips with beautiful music playing on the car CD;
- simple trips in a bus to the city
It is amazing for people who are confined to their homes
and even more so to take them through the city at night to see the lights;
- watched cheap $1 phenomenal DVD’s on Tuesdays
– only fun, musical, uplifting or great documentaries on other countries;
- Dot always had the close company of our King Charles Cavalier Spaniel "Aussie".
In textbook terms, it could be described as "pet therapy" .. but from Dot's perspective,
she had had animals all her life and had a lifelong bond with them.
The company of a pet is priceless ! Dot's hands were almost always permanently clenched -
she couldn't hold anything or do anything with her hands herself but the one thing she could do
was stroke Aussie with her clenched hand. It was beautiful to watch.
Never under-estimate the power of pets to rejuvenate anyone's spirit but particularly an older person.
Pets are 24/7 unconditional love. "Aussie" made her days beautiful.
- drove to random places to see whatever we saw along the way
and ALWAYS we saw things to amaze or fascinate us;
- pushing her along the boardwalk along the river in the city
to seethe water craft, all types of people doing ordinary things, see the city buildings
- going through the Art Gallery & Museum
.. seems an ordinary concept to people in the flow of life
.. but she wouldn’t have seen either of them for over 20 years
and before that she would have only seen the old Museum
- always, and without exception, we had cheerful or inspirational music playing,
whether it was in the car or at home. Music made so many things memorable.
Dot was always the fun at the end of the rainbow ..
I had parked her wheelchair at our gate after an outing while I collected my mail.
I looked up to see the rainbow behind her .. that photo was the reason I have used so many rainbow colours
and symbols on the website pages. She added colour to everyone's black and white lives.
One of the things I wanted to do for DOT was hire a stretch pink hummer
.. and take her and her family (or the few people who had been so instrumental
in achieving what she did) on a short trip somewhere.
It would have been such a great experience for her and them.
I hadn't implemented that idea.
I drove her to the hospital myself at the end and made that as beautiful as I could
.. BUT it was only afterwards, I realized that I should have thought of taking her in the
Stretch Pink Hummer .. it would have been one helluva way to go..
Parents have made so many sacrifices for their family over a lifetime and rarely put
themselves first .. Dot's needs always came last.
These adventures were a way of redressing that
Imagine pulling up to the hospital in a stretch pink Hummer
not necessarily to the door but as far as possible without interfering with hospital traffic.
It would have been a final celebration of her life
just as deserving as birthdays and wedding celebrations.
That person will never be in our lives ever again .. it is not a time for restraint ..
it is a time to live boldly .. right to the end.
No professional athlete lies down 100 metres from the finish line and waits for the line to come to him.
No professional tennis player stands behind the line while a ball bounces just over the net.
Our lives are way more important than those events and yet sometimes people give up years before
the finishing line. Race all the way to the end instead !
If we'd arrived at the hospital in the Pink Hummer,
not only would her spirit have killed itself laughing,
everyone’s spirit’s at the hospital would have gone through the roof
and so would have mine !
The more you truly allow a person to live their life to the maximum
and share that experience with them ..
There are then so many beautiful memories to look back on,
so many new friends who shared the adventures
AND the example to live your own life with the same zest
which then inspires the next generation.
Imagine the exhileration, the joy, the excitement, the enthusiasm, the abandon, the inspiration of encore songs at live concerts where there are 10,000 people or New Year's celebrations
.. why shouldn't the end of a person's lifetime of contribution, struggles, memories, relationships
and achievements be celebrated even more joyfully !
There are no endings .. just new beginnings.
Graphics from sxc.hu