All week long, the buzz has been around our tenacious warrior gentleman, who clearly was at the end of his life. No one wants to be the person who accidentally chokes him on water or rolls him and feels the final death spasm but someone has to be there. It was inevitable that one of us would be the last Health Care representative to attend to him and today was the day. My co-worker and I walked in to find him deceased. We did his last care as an act of closure and a nicety to the family and then we cleared as many of the medical reminders away as we could.
We said our goodbyes, telling his wife in respectful tones,how much we admired her for being so present and willing. Grace under pressure needs to be affirmed. We left the home, looked at each other and decided to go for coffee. I booked off my next client as I could feel my usefulness as around the zero mark. My coworker did the same. Do not think badly of us. We just needed to breathe.
For three years we have been going into that home to care for this man. At first we went to the upstairs bedroom. Next we used a lift for bathing but assisted him to stand and walk. A renovation moved him to the lower area where a hospital bed and an Angel overhead lift made transfers safe for all. Last summer the word came down the pike that the assisting to stand was off the books. He grumbled but acquiesed. His decline necessitated catheter and bowel care, and even this indignity he bore. His wheelchair was modified repeatedly to accomodate his growing needs. Pureed food came before syringe, and this last week, it was very little of anything. The constant throughout all this was his resilience and refusal to have things done any way but the way he wanted. He did not suffer fools but once he trusted, that trust was firm and unwavering.
To see another human being use their will so mightily is an awe inspiring thing. Very few of us possess the tenacity to wrestle Death to a draw. The trouble with a draw is that there is always a rematch, and Death being who he is, always wins.
There are no words for the things we see and do. There is no one other than another Palliative Care worker who understands the feelings that wash over us at such a time as this. We are happy that he has found his rest but we are sad that we bore witness to such incredible pain and suffering.
The reason that man stayed around this planet on this plain for so long is that he understood what is stronger than death. It is love. He had the love of a wonderful woman, bless her heart.
It will be a long time before I forget these two extraordinary people. I stand humbled.
Showing posts with label ALS. Show all posts
Showing posts with label ALS. Show all posts
10.1.09
4.1.09
Palliative Care is not for some....
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."
---then---:
"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."
He snorted.
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."
--Helen Keller
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."
---then---:
"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."
He snorted.
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."
--Helen Keller
18.10.08
Three Life-changing Letters - ALS
Amyotrophic Lateral Sclerosis:
A = absence of
myo = muscle
trophic = nourishment
Lateral = side (of spine)
Sclerosis = hardening
OH how my heart hurts when I read these three letters on a case file.
For a disease that is said to strike 6 in 100,000 Canadians, we sure seem to have a high proportion of afflicted in this Paradise of ours. Naturally, because we live in the best spot in all of Canada, we do get retirees from all over and everyone gets some sort of thing that slows them down. Some of us just get Old Age and all it's attendants, but others are felled by such as ALS.
In the last 2 years, I have attended 7 different people in this area of approximately 20,000 residents, and that is just the ones I know. Statistically, we should have a much higher popluation for these kinds of numbers. What is even freakier is that three of those people live within 1/2 mile of each other. In this case I am aware it is coincidental but it is still weird.
I was called into our sister town a few months ago to assist a gentleman who was about to go in and get a feeding tube installed. He still had the power of speech, and spent a lot of our time thanking me and complimenting all our team on their professionalism, compassion and skills. I recall thinking at the time: "Hmm, the last person who complimented me so profusely passed away not long after." These kind of people who see the good in all, and try to be the best they can in all ways in all times, make even their own deaths easier on others. I stand in awe of this.
This gentleman did indeed pass away not long after our meeting.
Now I am in another home, with another family, helping another person who is trying to live his best life under ALS's oppression. He also has an amazing wife who does everything she can to make things flow smoothly. My concern is always that these superwomen wear their bodies out caring for their spouses and do not realise it until after the fact when they too are clients. Still, you cannot ask the Sun not to shine nor command the Wind not to blow. She will do as she wishes until she cannot.
Me, I get to go home at the end of the day to my doggie and my beautiful new condo.
MMMmmmMMM! That could change in a heartbeat, as well I know. I enjoy every minute.
--------- *
It is with words as with sunbeams. The more they are condensed, the deeper they burn. ~Robert Southey
18.5.08
Gestation
In the line of work I have chosen, situations parallel each other. My eyes see the line of humanity, all different, all the same. The sketches of each situation are like embryos, each so alike until the process of gestation defines the differences.
One of the embryos is a clone. Many many of these selfsame clones inhabit our area. The clones name is ALS. This awful disease takes everything away from the person hosting it.My clientèle matures as do I, and the number of people I meet professionally with this disease increases, evermore.
After watching the declines, it is my thought that those whose breathing muscles go first are the lucky ones. The alternative is that you watch your body shut down, bit by agonizing bit, and you become 100% dependent on other people for your personal care, indeed for everything. Like so many things, this is hardest for those with Type A personalities. Loss of control. Loss of everything.
I am thankful that I have had some very bad experiences with some of these clients as I have learned some very invaluable lessons. I am a person who loves to learn. If I fail at something I need to know how and where I failed not just why. I also need to try it again and apply my insights. There was a terrible experience this week for my client and myself. I am looking forward to betterment.
One of the embryos is a clone. Many many of these selfsame clones inhabit our area. The clones name is ALS. This awful disease takes everything away from the person hosting it.My clientèle matures as do I, and the number of people I meet professionally with this disease increases, evermore.
After watching the declines, it is my thought that those whose breathing muscles go first are the lucky ones. The alternative is that you watch your body shut down, bit by agonizing bit, and you become 100% dependent on other people for your personal care, indeed for everything. Like so many things, this is hardest for those with Type A personalities. Loss of control. Loss of everything.
I am thankful that I have had some very bad experiences with some of these clients as I have learned some very invaluable lessons. I am a person who loves to learn. If I fail at something I need to know how and where I failed not just why. I also need to try it again and apply my insights. There was a terrible experience this week for my client and myself. I am looking forward to betterment.
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