One of the difficulties within the structure of the Government HealthCare system, as it pertains to care in the home, is that it assumes every Doctor, Nurse, and HealthCare Worker can do palliative care at an acceptable level. This is a fallacy.
Although we all see some of it, and most of do some of it, not all of us enjoy it. There are also those who the client does not enjoy having. The things my clients tell me would put the curl in or take it out of almost anyone's hair. Some days, I hear about circumstances and comments of the unfortunate nature and some days I hear it first hand. Today was such.
In the home of our magnificantly fierce gentleman, he of the indomitable spirit, things are not going well. There are some nasty complications this far down the end of life road. His strong heart and will keep beating in a body that is literally rotting from the inside out and it is a source of amazement that he fights on for every breath. This week is truly the end. He has not taken food for 2 weeks, and his breathing is laboured. He is gasping for air. He is choking on water which we administer with a syringe. He expresses himself in grunts and makes eye contact to show distain or amusement. He and I get along well. I try not to ask too many questions and keep my chatter lite.
My philosophy of care remains unchanged: do the job well, be mindful of the client's individual, maintain client dignity and then get the hell out of the way.
Each day as I enter this home over the holidays, a different co-workers face greets me. As he is a two person assignment, it is essential that at least one of the two is both trained and familiar with the client. I am that one. Today the other is a pleasant well-intentioned woman who has high skills. We rarely work together. She enters the bedroom, greets our client, bends down over the man in the bed and announces:
"Oh my GAWD- your eyes look awful. You look like you are going blind."
"Happy New Year. Well, I guess it isn't a very happy one for you eh."
and so on.
My experience dealing with people who are inappropriate, is that they do not learn appropriateness from co-workers- they learn it from clients. Until the day a client tells her that she is out of line, she will continue to be who she isand so, I waited until she left the room to lean in and say:
"You'll have to forgive her. She means well but is a tad insensitive."
We got him up today. After a week where he spent alot of time in his bed, he wanted a change. He has a wonderful bed that inflates and deflates evenly in rotation so that his inability to move does not result in bedsores. With that bed, it is not necessary to reposition him unless he desires it. Once up in his modified wheelchair, only massive pillowing kept his head erect, as he is too weak even to hold his own head up. Each breath rasps and there is a faint gurgle. Every single respiration sounded like he was wrestling the angel of death for it. When I left the home I was thinking how nice it would be if he could have a wee nap by the fire and just sleep on into eternity.
Soon. Very very soon.
"We would never learn to be brave and patient if there were only joy in the world."