Submitted by GremlinBandit t3_xzdz21 in todayilearned
I did in-home care for a kid with mucopolysaccharidosis III aka Sanfilippo. He was misdiagnosed with PDD-NOS/atypical autism for most of his life, because even though it's a simple pee test to diagnose it's so rare no one thought to do it until he started declining severely in late adolescence. Someone might have caught on sooner if any of his siblings had also had it but somehow he was the only one of 8 kids (with a 1 in 4 chance) to inherit the gene defect from both parents.
His parents were able to keep him at home for most of his life except for 2 years when he had to go to a group home because they weren't able to find another carer for him after I herniated a disc in my back (he could be extremely aggressive and his parents were older/had physical disabilities). When he aged out of children's services at 21 his mom really hustled to get funding and arrange 24/7 care for him at home and his dad built onto their house to make an apartment for him. I was able to come back as support staff for his last year and a half at home. We worked to keep him as active and functional (and entertained) as possible but his CNS slowly degraded and he finally couldn't swallow at all. An abdominal port for a feeding tube wasn't an option (he would've had to have been either heavily sedated or physically restrained at all times to keep him from messing with it) so his parents decided to enter him into hospice where he was kept comatose until he passed of dehydration. It was rough but a lot quicker than what some kids get, spending years bedbound before passing.
Kept comatosed until he passed of dehydration.
Is that a peaceful way to go? is it pain free? would he of known? I know he was put into a coma but what’s the general ease of passing here?
Also here’s an interesting bit of info I found, I have cerebral palsy which is brain damage at birth, however you’d think dementia could be an increased risk factor later in life, as my brain and body went through a stressful brain damage event but apparently people with cerebral palsy have no link to dementia, unless they have some form of epilepsy.
The first couple days he was in the hospital, he was sedated but would sort of wake up every few hours. His mom had to argue with the Dr to keep him completely under, when I talked to the nurses about how he shouldn't be allowed to wake up one told me, "Let him say goodbye" which was ridiculous because he had the mind of a 2 yr old. He couldn't understand what was happening, just that he was uncomfortable and somewhere strange. Once he was home he was kept completely under so he couldn't be aware of anything and was given morphine along with whatever else they used so he wouldn't feel pain. When he passed he just stopped breathing.
Thank for the context and information, you are a very empathetic person with a big heart, to be able to witness that, when you knew the outcome, yet you still did your duty to that poor young person. Im 30 now but couple years ago I had to watch my grandad die at his home, and yeah his last breath was rather peaceful and he also had morphine, but his was pancreatic cancer. He lived to a good age and I don't feel sad about it so much now, but thats nothing compared to that poor boy who deteriorated at a young age, Im glad he didn't suffer.
I wonder why people don't do that for assisted death, or death penalty, (sorry I read another post earlier) but slipping into a coma and just lots of morphine whilst dehydration sets in
Thank you for replying and I hope you were able to maintain a firm grip on your own mental health during your working hours, and have good coping mechanisms.
It takes a strong individual to do, what you do.
Some medical professionals are ridiculously out of touch with obvious things. My friend's dad was 83, had congestive heart failure and dementia so severe that only Haldol kept him from just crazily striking out at nurses and family and going full on psychotic. Then some doctor decided to take take him off the Haldol, because it could make his heart problem worse. The dad went apeshit, nurses couldn't control him, and that sure as hell didn't help his heart. But the doctor refused to put him back on the Haldol, because he felt it negatively impacted this demented, dying man's quality of life. Like somehow being a mindless rage machine flinging his own feces was better? Thank goodness that doc got taken off the case, and the poor old dad was able to be medicated back to calmness for the last few weeks. It was as if the doc couldn't recognize that a mind destroyed by dementia cannot be capable of good quality of life.
When my client went to the hospital he was running a high fever. The hospital gave him a small amount of aspirin to reduce it but refused to give more because it might hurt his liver, even though we knew by that time he wasn't going to recover. They also argued about giving him ketamine to keep him under even after his mother explained multiple times that he was resistant to milder sedatives and aggressive when upset/confused.
That poor family.
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