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Old 12-28-2012, 06:34 AM
Status: "Well informed, thus unvaxxed!" (set 2 days ago)
 
Location: Kansas
21,432 posts, read 18,050,705 times
Reputation: 20477

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I took my young adult son with DS for a physical yesterday because he is getting ready to enter a new day program. We were told he had a heart murmur but that it wasn't a big deal. Since that time we have learned that as time goes on, it could become a problem. So, at this appointment, the physician asked if we had a long term care plan in mind and I thought he was talking about after our deaths who would care for our son but he went on to explain that he was talking about the amount of intervention we would want if this heart thing flares up. I told him no and probably I didn't want to think about it and he said "We are finite." Yeah, but................. Our son is lower functioning and as I thought about it, with new changes where the government might be deciding who lives and who dies, I'm wondering where that would leave us. I am going to make an honest effort to look at leaving the country and I had been planning to do this for some time now since this is not the same country that I grew up in anyway. My son is worth at least as much as anyone else and more than probably a lot of people!
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Old 12-28-2012, 10:52 AM
 
Location: Wisconsin
19,452 posts, read 22,064,465 times
Reputation: 50718
Quote:
Originally Posted by AnywhereElse View Post
I took my young adult son with DS for a physical yesterday because he is getting ready to enter a new day program. We were told he had a heart murmur but that it wasn't a big deal. Since that time we have learned that as time goes on, it could become a problem. So, at this appointment, the physician asked if we had a long term care plan in mind and I thought he was talking about after our deaths who would care for our son but he went on to explain that he was talking about the amount of intervention we would want if this heart thing flares up. I told him no and probably I didn't want to think about it and he said "We are finite." Yeah, but................. Our son is lower functioning and as I thought about it, with new changes where the government might be deciding who lives and who dies, I'm wondering where that would leave us. I am going to make an honest effort to look at leaving the country and I had been planning to do this for some time now since this is not the same country that I grew up in anyway. My son is worth at least as much as anyone else and more than probably a lot of people!
Please relax. I don't think that your doctor was implying "no intervention" for your son.

Perhaps, your doctor was wanting you to consider the level of medical intervention. I obviously don't know what type of heart needs or other health needs your son has but consider various situations.

Maybe one of the potential complications is being bedridden for the rest of his life. If your son is quite active that may be a very big change for him. What if the heart problems or the heart surgery/complications can result in strokes or perhaps lead to being on a breathing tube. Would your son understand and tolerate those changes in his life?

I have worked with several students who were bedridden, with very, very limited movement (one student could only move his eyes) and on breathing tubes, etc, and had loving parents/families, teachers and nursing staff and had a wonderful quality of life. But in each case the parents had to decide whether or not to have additional medical involvement in emergencies (DNR orders).

My students had these health problems their entire lives. But, going from being an active, mobile adult to being much less mobile can be extremely difficult for some people. It is something to think about.

Don't panic and make any rush decisions regarding moving. I think that your doctor just wants you to learn more about possible problems and possible solutions/outcomes and to think about what is best for your child and your family.

Just like you needed to make difficult decisions when you filled out Power of Attorney for Health Care Plans for you and your spouse I'm speculating that the doctor wants you to start thinking about those decisions for your son, too.

Good luck to you and your family.
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Old 12-30-2012, 08:06 AM
Status: "Well informed, thus unvaxxed!" (set 2 days ago)
 
Location: Kansas
21,432 posts, read 18,050,705 times
Reputation: 20477
Thank you for your post. The thing is that I saw one of the DNRs once at a high school where I often substituted as an aide in the special education program and it was the mother telling the medical professionals not to do anything "heroic". I was well acquainted with the student that this applied to. He had been in foster care for many years and the foster mother did a super and unbelievable job of caring for him. I just could not see how a parent, especially one that was non-custodial, could be making such a choice for another human being. It is a big decision and I don't think it is one that can be made in stone anyway. I have heard a lot of people say that they would rather die than fill-in-blank but when it came right down to it............................ My son is 26 years old and in good health. The case manager had asked me in front of him if we had a burial plan for him. And, leaving the country was on my mind before this. Micro-chipping and seizing weapons, now that's intervention that I have thought about. I do believe that people will be denied medical care based on their presumed value in the future.
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Old 12-30-2012, 08:38 AM
 
1,458 posts, read 2,475,507 times
Reputation: 3123
It isn't an unreasonable question. In fact, it is a very responsible one for the caregivers of any disabled person to consider.
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Old 12-30-2012, 09:06 AM
 
Location: Geneva, IL
12,977 posts, read 13,586,802 times
Reputation: 14843
Every responsible person should have an Advanced Health Care Directive for themselves, or the people they are legally responsible for. It is much easier to have thought things through before the onset of a stressful, fraught event.
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Old 01-09-2013, 06:34 AM
Status: "Well informed, thus unvaxxed!" (set 2 days ago)
 
Location: Kansas
21,432 posts, read 18,050,705 times
Reputation: 20477
Well, we have every intention of extending our son's life as I am sure that is what he wants also. The fact that they bring this up in front of our son who functions at about the 4 or 5 year level also played into the situation. No other doctor has brought this up in the past. One of the case managers did ask if we had a burial plan for our son while he was sitting there. Seriously, think about how you would feel if these questions were asked in front of your child who was 4 or 5 years old of age and did not understand death? Our son goes to the doctor rarely since we use homeopathy/herbal medicine because, frankly, our son often became worse when treated by the doctor. This question was never asked of me, my husband or our older son which is why it seemed "off key".
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Old 01-09-2013, 11:04 AM
 
3,951 posts, read 10,568,558 times
Reputation: 8225
I think everyone, whether sick or disabled, should consider their options and discuss their wants with close individuals or a doctor. I have discussed what I want with my husband and his mother has done this with us. This includes no heroics and no transplants. Each of us has our own levels that we want done.

The doctor wanted you to think about the situation. Nothing megative was being suggested. Give the poor woman/man a break.

If you think it is any different anywhere else, think about it very carefully.
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