How do we respond to situations like Robert Latimer
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I had a community nursing aid come around - the second week after organizing it myself - once or twice but he was a middle aged male, I wasn't comfortable with him, and I decided I could make due the best I could for 8 weeks.
Northwind
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When my sister was in the hospital a male care aide offered to help her shower. She declined. He was fine and professional. She was just understandably not ready to have someone else help her shower. She had no doubt already had to give up enough by then. She needed time to adjust. I'm not sure how I'd feel with a man helping me under those circumstances, even if I did trust him. That's pretty big.
My scooter helps. I have more freedom and even people - strangers - treat me differently. There must be something about watching somebody walk awkwardly that brings out subconscious ableism. Stiff misaligned bodies and awkward movements, balance issues - made people assume I was in pain even when I wasn't. If I looked serious I was probably tired - it does make you work harder to get around - and/ or concentrating on not falling or had something completely unrelated on my mind.
I kid you not, though, since 7:30 and now (10:10) I have rolled into my driveway twice, decided I don't want to go in for the night yet, and gone back out. Right now I stopped on the corner to type this and I'm going for one more spin around the block! LOL
Northwind
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Your scooter gives you more freedom. I suspect people are uncomfortable with people who are different. I guess that is a form of ableism among other things. It's most certainly privilege on the part of those who agree uncomfortable.
I hope you are able to go out and meet people now that you're mobile. There are lots of opportunities if you're willing to have adventures.
I hope you are able to go out and meet people now that you're mobile. There are lots of opportunities if you're willing to have adventures.
ChemGal
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@DaisyJane I can only imagine the issue with pain control with those who have ID or issues communicating.
In general, it's pretty well known that people tend to under-estimate other's pain. When the cause is unexplained or a cause is known but invisible I think that makes it worse.
I would say I have pretty good pain tolerance although grew up being told I didn't. I have had chronic pain on and off at various time points, as well as chronic issues that cause frequent acute pain flareups. I did three hours of dance classes on an arch that once my shoes were off swelled to the point where the arch went the wrong way. My mom used to get frustrated with me when I was young as I would feel unwell and get a fever with ear infections but I was never crying from them or complaining about pain so they would go undiagnosed.
With HAE attacks the number of times that things were brushed off as just me being stressed or trying to get out of something was ridiculous. When I had a severely abscessed tooth and was having facial HAE attacks from that Chemguy said my responses reminded him of his Mom's to when she had intense periods of pain from trigeminal neuralgia - one of the conditions that is known to cause severe pain. When I called the dentist and explained my pain she put it down to teeth grinding and I was like no, there is no way that would cause this severity of pain. She said oh, it can be really severe from teeth grinding, when she examined me though she apologized. I went to the doctor during that time too, she kept commenting about the mild eczema on my face (visible) and wasn't planning on helping me at all with tooth - at the time I was uncertain as to what was causing it as I had some pain on and off leading up to that but my dental appointment when I asked about it didn't pick up on it.
With the liver biopsy I rated my pain at an 8/10 and I don't give a high number like that lightly. My report afterwards was 'some pain'. I don't know if I had an HAE attack with that, but considering how similar the attack was later that day at home I suspect I may have. There are many women who report that HAE attacks are more painful than childbirth and I know often times childbirth rates at a 10. I was given 2 injections of morphine, one IV and one IM while at the hospital but was told to use tylenol at home.
When i had an HAE attack and it was my first thought after waking up from the general anesthetic, I was told what I was experiencing was normal and not an attack. It took multiple attempts & my husband to start advocating for me to convince people that my throat was swelling.
It's funny with getting my wisdom teeth out and the tooth extracted and the meds I was given for at home afterwards. Much stronger than for any other pain I have dealt with. As long as I wasn't having an HAE attack though my pain wasn't all that high. I did use NSAIDs when I could - both for normal inflammation reduction to prevent the HAE swelling as well as reducing the pain. I think if I could have avoided HAE attacks though, besides right after my pain levels would have been tolerable without any meds. Dental pain is something that many experience though, so more people can relate to it therefore better pain control is provided.
It would be nice if there was a quantitative test that could be done to actually measure someone's pain and fairly compare it between people too. If that were to happen, I think invisible and unexplained pain would be treated much better. Ditto for those who can't communicate it well.
In general, it's pretty well known that people tend to under-estimate other's pain. When the cause is unexplained or a cause is known but invisible I think that makes it worse.
I would say I have pretty good pain tolerance although grew up being told I didn't. I have had chronic pain on and off at various time points, as well as chronic issues that cause frequent acute pain flareups. I did three hours of dance classes on an arch that once my shoes were off swelled to the point where the arch went the wrong way. My mom used to get frustrated with me when I was young as I would feel unwell and get a fever with ear infections but I was never crying from them or complaining about pain so they would go undiagnosed.
With HAE attacks the number of times that things were brushed off as just me being stressed or trying to get out of something was ridiculous. When I had a severely abscessed tooth and was having facial HAE attacks from that Chemguy said my responses reminded him of his Mom's to when she had intense periods of pain from trigeminal neuralgia - one of the conditions that is known to cause severe pain. When I called the dentist and explained my pain she put it down to teeth grinding and I was like no, there is no way that would cause this severity of pain. She said oh, it can be really severe from teeth grinding, when she examined me though she apologized. I went to the doctor during that time too, she kept commenting about the mild eczema on my face (visible) and wasn't planning on helping me at all with tooth - at the time I was uncertain as to what was causing it as I had some pain on and off leading up to that but my dental appointment when I asked about it didn't pick up on it.
With the liver biopsy I rated my pain at an 8/10 and I don't give a high number like that lightly. My report afterwards was 'some pain'. I don't know if I had an HAE attack with that, but considering how similar the attack was later that day at home I suspect I may have. There are many women who report that HAE attacks are more painful than childbirth and I know often times childbirth rates at a 10. I was given 2 injections of morphine, one IV and one IM while at the hospital but was told to use tylenol at home.
When i had an HAE attack and it was my first thought after waking up from the general anesthetic, I was told what I was experiencing was normal and not an attack. It took multiple attempts & my husband to start advocating for me to convince people that my throat was swelling.
It's funny with getting my wisdom teeth out and the tooth extracted and the meds I was given for at home afterwards. Much stronger than for any other pain I have dealt with. As long as I wasn't having an HAE attack though my pain wasn't all that high. I did use NSAIDs when I could - both for normal inflammation reduction to prevent the HAE swelling as well as reducing the pain. I think if I could have avoided HAE attacks though, besides right after my pain levels would have been tolerable without any meds. Dental pain is something that many experience though, so more people can relate to it therefore better pain control is provided.
It would be nice if there was a quantitative test that could be done to actually measure someone's pain and fairly compare it between people too. If that were to happen, I think invisible and unexplained pain would be treated much better. Ditto for those who can't communicate it well.
Lastpointe
Well-Known Member
Chemgal. Did your tooth abscess cause more profound issues for your health. Dental problems can really affect our health for everyone
And yes, it would be nice if there was a way to measure pain. I find it hard to compare one pain to another as your memory changes over time. When I had my first child I was sure I would never forget the pain. BUt i did. And had another
And yes, it would be nice if there was a way to measure pain. I find it hard to compare one pain to another as your memory changes over time. When I had my first child I was sure I would never forget the pain. BUt i did. And had another
Northwind
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You raise some good points @ChemGal I can totally identify with the dental pain. I had some a while ago that made me acutely aware of my facial nerves. It took a few attempts to figure out what was causing it. Thankfully, the dentist and doctor I saw both seemed to recognize my pain.
My surgery in October caused some pain of course. It wasn't as bad as the pain from my foot surgery. I could disconnect a bit from my foot pain because my foot is so far from my brain. Elevating it helped.
When we can put pain in perspective and know it will pass, it is easier to manage. Someone like M would probably be in more distress (I'm guessing) because the pain would be ongoing.
I can only imagine how powerless Tracy's parents would feel seeing her in ongoing pain.
My surgery in October caused some pain of course. It wasn't as bad as the pain from my foot surgery. I could disconnect a bit from my foot pain because my foot is so far from my brain. Elevating it helped.
When we can put pain in perspective and know it will pass, it is easier to manage. Someone like M would probably be in more distress (I'm guessing) because the pain would be ongoing.
I can only imagine how powerless Tracy's parents would feel seeing her in ongoing pain.
ChemGal
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As far as I know, just in an acute way with the HAE.
DaisyJane
I probably should be working.
As I read the responses I find myself wondering how we integrate our experiences with the idea of euthanasia for people with chronic suffering and ID. Will there ever be a way to ethically handle the situation for people who never have the capacity to identify their wishes and limits on suffering. Certainly as Kimmo has pointed out there is potential for abuse - and I agree with many of her points. Does this mean that any kind of "mercy killing" will never be appropriate for people with ID? I am genuinely asking that question.
But then, as I reflect, I also find myself wondering if our society's expectation that people with ID have to live with their suffering could then be viewed as some form of intellectual ableism. Because people with ID lack the ability to identify and describe their suffering, as well as articulate personal boundaries, why must they risk intolerable suffering when people who have the ability to articulate their suffering can place limits on their suffering?
Medical teams are more sensitive to suffering and ID these days when compared to Tracy's. But there are still situations where people with ID suffer. In our experience the most profound suffering tends to be the ongoing, poorly understand chronic pain - the stuff of day-to-day life. Because the list of reasons for pain for people with complex issues is very long it can be very difficult, at times impossible, to isolate the source, and we have found that it can takes months/years of advocacy and ongoing suffering before the pain is addressed in a meaningful way. When Matthew was younger we struggled with chronic GI pain for almost two years before it was successfully treated - and only then because I refused to leave the emergency room until my son's suffering was satisfactorily addressed (that earned me some friends - NOT). He ended up being admitted and my concerns were finally taken seriously. In contrast, when severely ill in hospital (ie: ICU) there is always a conversation about how far we want the team to go in preserving our son's life. Once in an acute care setting there seem to be opportunities to have a conversation about legally and ethically allowing a person with ID to die, and I get the sense that comfort care would be offered.
What do people think?
But then, as I reflect, I also find myself wondering if our society's expectation that people with ID have to live with their suffering could then be viewed as some form of intellectual ableism. Because people with ID lack the ability to identify and describe their suffering, as well as articulate personal boundaries, why must they risk intolerable suffering when people who have the ability to articulate their suffering can place limits on their suffering?
Medical teams are more sensitive to suffering and ID these days when compared to Tracy's. But there are still situations where people with ID suffer. In our experience the most profound suffering tends to be the ongoing, poorly understand chronic pain - the stuff of day-to-day life. Because the list of reasons for pain for people with complex issues is very long it can be very difficult, at times impossible, to isolate the source, and we have found that it can takes months/years of advocacy and ongoing suffering before the pain is addressed in a meaningful way. When Matthew was younger we struggled with chronic GI pain for almost two years before it was successfully treated - and only then because I refused to leave the emergency room until my son's suffering was satisfactorily addressed (that earned me some friends - NOT). He ended up being admitted and my concerns were finally taken seriously. In contrast, when severely ill in hospital (ie: ICU) there is always a conversation about how far we want the team to go in preserving our son's life. Once in an acute care setting there seem to be opportunities to have a conversation about legally and ethically allowing a person with ID to die, and I get the sense that comfort care would be offered.
What do people think?
Lastpointe
Well-Known Member
I think for a child like Matthew you are between a rock and a hard place. He can’t understand nor consent to any of his treatment. So you are his advocates as well as decision makers
I expect that some families set up a trust type situationwhere the parents are advocates but there are recognized guardians who chime in on big decisions
In many ways, I feel each person who is unable to participate at the level of Matthew should have a non family guardian type person. Someone who is objective
But then I struggle with some faceless ”someone” affecting your decisions
So far the press has more focussed on people struggling to get hospitals to continue life saving treatment rather than stopping it. And that takes us down that road where medical science can keep just about anyone alive. To what end? With what ramifications for the patient, the family........
Having worked in the field , I suspect that when Matthew was born, the emergency care given to him was automatic , life saving treatment. The decisions to save the life of an infant is straightforward. But the ramifications for the rest of their lives can be very difficult
At some level, hospital ethics committees should be more active perhaps in these sorts of decisions. Because of course the challenge for a person such as Matthew is who is protecting him if the family wants to end his suffering
That extends of course to the weak and elderly. Pushed aside, made to feel it’s time to go. And is there financial incentive.
All those things should be covered by the rules as set up. But nonetheless it is a worry
I expect that some families set up a trust type situationwhere the parents are advocates but there are recognized guardians who chime in on big decisions
In many ways, I feel each person who is unable to participate at the level of Matthew should have a non family guardian type person. Someone who is objective
But then I struggle with some faceless ”someone” affecting your decisions
So far the press has more focussed on people struggling to get hospitals to continue life saving treatment rather than stopping it. And that takes us down that road where medical science can keep just about anyone alive. To what end? With what ramifications for the patient, the family........
Having worked in the field , I suspect that when Matthew was born, the emergency care given to him was automatic , life saving treatment. The decisions to save the life of an infant is straightforward. But the ramifications for the rest of their lives can be very difficult
At some level, hospital ethics committees should be more active perhaps in these sorts of decisions. Because of course the challenge for a person such as Matthew is who is protecting him if the family wants to end his suffering
That extends of course to the weak and elderly. Pushed aside, made to feel it’s time to go. And is there financial incentive.
All those things should be covered by the rules as set up. But nonetheless it is a worry
Deprecation:
Etymology. In general English usage, the infinitive "to deprecate" means "to express disapproval of (something)". It derives from the Latin verb deprecare, meaning "to ward off (a disaster) by prayer". In current technical usage, for one to state that a feature is deprecated is merely a recommendation against using it.
Do the powers hate to see their powers end? Thus the powers would express disapproval of their departure while some are glad to get out from under it defining the differences existing between the powers of life and exorcism of thought ... and the thought goes on in a dark spot!
Are the means of scotland on the lo' rhodes ... a root enigma? Wards of some strange doings ... rhum hours of war time ...
Etymology. In general English usage, the infinitive "to deprecate" means "to express disapproval of (something)". It derives from the Latin verb deprecare, meaning "to ward off (a disaster) by prayer". In current technical usage, for one to state that a feature is deprecated is merely a recommendation against using it.
Do the powers hate to see their powers end? Thus the powers would express disapproval of their departure while some are glad to get out from under it defining the differences existing between the powers of life and exorcism of thought ... and the thought goes on in a dark spot!
Are the means of scotland on the lo' rhodes ... a root enigma? Wards of some strange doings ... rhum hours of war time ...
Mendalla
Happy headbanging ape!!
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It goes a bit further than that. Saying that a feature is "deprecated" means they recommend against using it because they are planning to eliminate or replace it in a future version. It's a way to warn you that you may need to change your processes.
Thus the extend of EXORCIST! Occipitalization? Imagine going further and outside the roue's ... beyond me ... like Poo and the Donkey factor ...
Why bother?
DaisyJane
I probably should be working.
I agree with some of your points LP. Though I will admit that my first thought was that there was no way in hell I would allow some nameless, faceless, "objective" person to be involved in life/death/care decisions re: my son. As far as I am concerned decision making begins and ends with me and my husband - in conjunction with the team. No one else knows our son and holds his history the way we do. We also have ensured that we have the full legal authority to make decisions (ie: guardianship/POA), though we do have a team of caregivers and people connected to Matthew that we would call if we needed support or people to help us think though decisions. We have been very intentional about the establishment of a "team" and we are in the process of establishing a microboard to assist in some legal decisions.
I know we are a family that would call in the hospital ethicist if we were ever struggling. My husband and I, for a day or two when Matthew was his sickest this last admission, wondered if we needed to have a chat with either the ethicist or spiritual care advisor (or both). We knew where we stood at either end of the spectrum in terms of intervention/no intervention, but we wondered if Matthew had crossed into a grey zone where things were less clear. Fortunately within a couple of days Matthew started to get better and we no longer felt a need to have that conversation. But my husband and I have committed to talking this through in the next couple of months so that we have a better sense of how we might respond if he is ever that sick again. As my husband astutely noted, "if not this admission, there will likely be an admission.....".
I know we are a family that would call in the hospital ethicist if we were ever struggling. My husband and I, for a day or two when Matthew was his sickest this last admission, wondered if we needed to have a chat with either the ethicist or spiritual care advisor (or both). We knew where we stood at either end of the spectrum in terms of intervention/no intervention, but we wondered if Matthew had crossed into a grey zone where things were less clear. Fortunately within a couple of days Matthew started to get better and we no longer felt a need to have that conversation. But my husband and I have committed to talking this through in the next couple of months so that we have a better sense of how we might respond if he is ever that sick again. As my husband astutely noted, "if not this admission, there will likely be an admission.....".
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Lastpointe
Well-Known Member
It is tricky and hard to quantify decisions. Catastrophic changes in most ways are easier. It’s the slow slide that is tricky
I agree that family understands the issues the best. When I was thinking out loud about an objective person I suppose I was thinking of some one like an ethicist. I also think that income, education, culture....... all those come into play. Both in making decisions to end supportive care and In challenging a doctor. And while family understands the patient best, it does feel that the hospital needs to have a;ethicist type person in the end of life discussions, whose role is to advocate solely for the patient. Recognizing that the advocacy might be towards end of life, not prolonging life
As I glean from your posts, Matthew leads a life with love, laughter, smiles, movies, hockey........ a pretty full if not traditional life. He seems like a lucky young man to have so much supportive family and care givers
And I assume your entire family worries about the future for him when you are no longer able to care for him.
The patient who is unresponsive, Comatose...... they are a tricky spot for family, doctors, hospitals. Often hugely differing opinions of what the future might bring. I don’t remember her name, but a dozen years ago a young woman, comatose. Relatively new hubby said they had discussed no heroic care. Parents of woman disagreed and fought long and hard to keep her on tube feeds. And lost. Those sorts of dilemmas challenge us all
And has Kimmio has pointed out, family can be the exact reverse. Cruel. Selfish, unaware, unsupportive.........
I agree that family understands the issues the best. When I was thinking out loud about an objective person I suppose I was thinking of some one like an ethicist. I also think that income, education, culture....... all those come into play. Both in making decisions to end supportive care and In challenging a doctor. And while family understands the patient best, it does feel that the hospital needs to have a;ethicist type person in the end of life discussions, whose role is to advocate solely for the patient. Recognizing that the advocacy might be towards end of life, not prolonging life
As I glean from your posts, Matthew leads a life with love, laughter, smiles, movies, hockey........ a pretty full if not traditional life. He seems like a lucky young man to have so much supportive family and care givers
And I assume your entire family worries about the future for him when you are no longer able to care for him.
The patient who is unresponsive, Comatose...... they are a tricky spot for family, doctors, hospitals. Often hugely differing opinions of what the future might bring. I don’t remember her name, but a dozen years ago a young woman, comatose. Relatively new hubby said they had discussed no heroic care. Parents of woman disagreed and fought long and hard to keep her on tube feeds. And lost. Those sorts of dilemmas challenge us all
And has Kimmio has pointed out, family can be the exact reverse. Cruel. Selfish, unaware, unsupportive.........
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DaisyJane
I probably should be working.
Agreed.
I think the story you might be thinking of is the Terri Schiavo story. The husband advocated for the removal of her feeding tube, the parents wanted it to remain. My eldest son was about 6 when this happened and he happened to hear the news story while riding his school bus. He arrived home traumatized because he thought that the government was going to go around removing feeding tubes and letting people die even if the parents didn't want that (his brother had a feeding tube by this point). We had to do some damage control.
PS - your post above says "edited by moderator". That was me accidentally hitting a button. Sorry. The way the commands come up on my screen as a moderator sometimes throws me off.
I think the story you might be thinking of is the Terri Schiavo story. The husband advocated for the removal of her feeding tube, the parents wanted it to remain. My eldest son was about 6 when this happened and he happened to hear the news story while riding his school bus. He arrived home traumatized because he thought that the government was going to go around removing feeding tubes and letting people die even if the parents didn't want that (his brother had a feeding tube by this point). We had to do some damage control.
PS - your post above says "edited by moderator". That was me accidentally hitting a button. Sorry. The way the commands come up on my screen as a moderator sometimes throws me off.
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One of my closest family was a doctor, I've mentioned it before, my step dad was a school teacher, so was my mom then she owned her own small business, all are educated. My parents "could" afford it if they had wanted to give up anything for their kids. They didn't - that's the truth of it. My half brother had a trust fund from his grandma. I was out on my own at 18 making my way trying to work and pay my rent and manage student loans like everybody else. But I couldn't so I got jobs and got experience until I got into working for a well known polling firm at the ground level. I thought it was beneath my ability then but I am grateful I did it, now. All of this with visible challenges walking (and the prejudices that come with that are as disabling as that), and more fatigue and pain than the average person...increasing with time...and bouts of clinical depression and abusive men coming and going. I got funding to go back to school in my 30s, briefly. I finished a short program in social service work - I was really disappointed my marks weren't high enough to get a scholarship to go further. I did pretty well but going back as a mature student with challenges and no support was pretty rough. It was also an emotionally challenging program (but one of the most informative and life changing, too).
Anyway, crappy families can cross all income and education demographics just like disabilities can. If one is the person with the disability and the crappy family dynamics (fewer of what are called natural supports), that person is going to struggle more...there are statistics for that, but it's also common sense. The majority of "high functioning" adults with disabilities against MAID are on my side of the fence, interesting, and not those who are well supported. The well supported are mostly for it.
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... on the MAID thread and this one, I made a few edits to posts that were not showing up right away.
Lastpointe
Well-Known Member
Honestly kimmio I find your parents appalling. I am stunned that as fairly well off people they are not both financially and emotionally supportive
But kudos to you for standing your ground and creating your life
But kudos to you for standing your ground and creating your life