20 10 2013
Day 1. in Greytown for a week of Hospice. 24/7 rest for muy Emily. 24/7 care for myself. I am fast coming to the realization aka awareness and acceptance that I need to consider the next step in my life. Next will come . . . Reality bites. Merde!
However! For now the welcome is delightful and sincere. I spent time exploring the grounds. Spring. Watching, parked, as the world goes by. Motorbikes, motor vehicles, farm vehicles. Harvest time. And amazingly, the bird sounds inside are awesome. I guess caged. Sad that healthy birds are caged. I guess they bring pleasure. I guess :)
A black bird sits nearby at my feet
My yellow power wheelchair holds me safe
Worms lay warm beneath the surface weed
A shiny orange beak stabs the earth
Food for newborn baby black birds.
A blackbird with shiny beak sits safe
Staring at me from a branch of a
Kowhai tree. His head turns left
And right before appearing curious
Am I a strange bird to him
Certainly I am no threat
My head moves as I stare back
Birds of a different feather
Nature and natural ‘things’ fascinate me. Has since a child. Nature as I have repeated, is my nurturer. My saviour. It has no agenda. Criticises not. Judges not. I hear that storms are the ‘will’ of God. An ‘act’ of God when nature is as nature does. I think not. Nature is Natural. The Universe reminding us of it’s beauty and it’s power. The sun and moon control what takes place on earth and in our hearts and minds. Our emotions rise and fall as do the oceans around us.
Last night I lay in bed kept alive by the full moon. What a spectacle. A perfectly white orb of pure reflected light. In days gone by, when I was a walking talking working sort of guy I would park myself outside and gaze in awe at our universe. Beats television. Last night was pure delight. Years ago in Colorado high in the Rockies I was hypnotized by the Universe. Tonight a clear blue sky as the Sun drops down over the hills regarded locally as mountains. My first night in hospice which really is basically, a nursing home. Sigh. What the fuck I ask myself am I doing here. I am not dead. I would rather be at home with muy Emily. Attitude. I need to look at my attitude. Gratitude Dicky. An attitude of gratitude.
Monday. Day 2
Not good. Someone turned off my bipap this morning as I lay in bed wondering why I was experiencing a panic attack then realized I wasn’t breathing. No one knew what to do. Muy Emily became involved. Merde! Now I am sitting in my room in my PWC not feeling at all safe. Trust and Faith? Who do I trust? Who can I turn to in reality? This too shall pass. Faith! I can but pray to my Higher Power and Trust. Simple is as Simple Does. I spoke to my daughter in Canberra and feel better for it. Helpless is not the same as Hopeless.
What to do? I am sitting here wondering looking at my attitude my reaction to this mornings chaos. Am I over reacting? Am I simply taking responsibility for my self? I ponder. No :-) I am not overreacting. My bowels just let go before help arrived. My lunch is inedible. It is what it is. The carers care, the nurses . . . ? Information does not get passed.
I am trying to find a piece I previously found which simply states the challenges facing MND/ALS patients. I need to have it printed so I can hand it to my carers. Then I need to try and make a schedule of my needs. This seems/appears to challenge others. There are so few of us.
Hamlet Soliloquy . . .
To be, or not to be: that is the question:
To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub;
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there’s the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor’s wrong, the proud man’s contumely,
The pangs of despised love, the law’s delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscover’d country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action…
Someone turned my wheelchair off last night. My PWC’s battery is fast fading, my door is closed, I cannot reach the emergency bell and muy Emily is on her way. Time for me to say my piece.
Check that Richard is awake.
Then ask if he wants out of bed.
He will nod.
He will throw blankets back. Raise back of bed. Supporting his back swing his legs over side so he sits upright then deal with Bipap.
Follow instructions as written.
After Bipap is changed Richard needs to be placed in chair and go to the toilet.
Then wash him.
Altroxin with water.
Then Dress. Teeth. This takes approx 30 minutes.
Ensure before Breakfast.
Ensure at mid day. Followed by lunch.
Ensure before Dinner.
9.00pm reverse morning schedule for bed time, including Bipap change over.
If Richard has not had Bowel movement for 24 hours, a teaspoon of Medicine.
Make sure pillow is at correct angle for Richard’s head and duvet reaches his chin.
MAKE SURE power is connected to power charger and charger is turned on.
If in any doubt PLEASE ask Richard.
MND is like being buried alive. It is a degenerative disease. The body will not co-operate.
I wrote this schedule today after a list of near disastrous errors made by the staff.
I have sent it to the Management team and hope like hell they read it and pay attention. Part of me feels heartless doing this but if not me then who will speak for me. Trust?
Again, it all comes down to communication. At least I can write.
Just met my next door neighbor, Vera Jameson as in scotch whiskey. Another visitor who Lives in Featherston but now in respite care. 93! Amazing. Spritely. We will chat further.
22 10 2013
Tuesday. A good nights sleep. A new attitude this morning. Me and Carers. Schedule posted to wall. Followed to a T.
Attitude is everything. I believe Nurses and Carers are to be encouraged to look at Patients as mirror images of themselves. Asking “how would I wish to be cared for and treated, this person could be me.” Illness strikes anyone at anytime as there are no guarantees in life.
Expect the Unexpected.
23 10 2013
Strange times. I could lie in bed all day but here I am. Up dressed washed and in my chair. It’s cold today. Feels strange. My morning carer is paying attention which is good news. Constipated once more. Full of gas.
10am muy Emily arrives, packs my stuff and packs me home. Happiness.
24 10 2013
Spring weather, breezy with sun jostling clouds.
Great to be in my own home. Taking care not to trigger
Any emergencies :). Taking life one moment at a time.
Each breath is precious. Friend’s names are my mantra.
Gratitude and Action are my motives for continuing life.
I have dreams that continue to fuel me, creative dreams
Via words and images inspire me, keep me sane each day.
Reading exploring words fuel my imagination. Gratitude.
Night wind rises rain slants down. Spring weather challenges.
All is well with my world. My carer has shaved washed dressed me
Time for sleep and dreams and muy lover lying next to mine.
25 10 2013
Friday and my friend Deane visited. Great to catch up.
Photographic images are my focus. Words hard to form.
Lunch. Shower. Major League Baseball. A friend joined to
Watch. A Boston fan. Boston lost. My friend left. Muy lover
Arrived home we ate some crackers and I choked.
Bad move. Dinner was delish and I continued to hope, just for today.
A visit to the bathroom solved that issue. I was full of gas.
26 10 2013
Saturday. Time to post blog entry.
A man may make a gun but a gun does not make a man . . . .