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hboyajian

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My dad is going in to get a PEG tube placed tomorrow morning. The doctor told my folks to review their living will, make any changes necessary, and bring it with them. This is a scary thing to think about, and nothing really happened about it. The document currently says that in the event of a terminal condition, my dad does not want artificial nutrition, hydration, or respiration. Terminal condition is defined as (among othe things) having a terminal illness that will result in death in "a reasonable amount of time." I'm sure my dad feels like he has some life time left, so he shouldn't be considered as terminal yet, I don't think. He and I got the paper out over Thanksgiving and discussed it some. I told him about portable ventilation with tracheostomy as a possible option in the future if he should want it. He had thought that ventilation meant being hooked up to a machine in the hospital and unable to get out of bed at all. He definitely doesn't want that kind of existence. He also doesn't want to be kept artificially alive if he is in extreme pain. He didn't make a decision about the portable ventilator. It was too much for him to think about, and he was tired, so I let it drop. My mom was just feeling overwhelmed by the whole thing. Just taking care of my dad takes all her energy, so they left the living will as is. It may be how my dad wants it, or it might not, I don't really know. It is hard to figure out all the possible situations that might occur and outcomes of different procedures. One thing my dad and I did was to come up with a system of communication to say "yes" or "no" in case he can't speak. This invloves being able to wiggle the fingers of his left or right hand, or if that is not possible, to open or close his eyes. That way, if he is conscious, he can still make medical decisions for himself. I realize I am rambling on here... don't know if I have a specific question except to ask for other people's thoughts on the subject.
 

Al

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Dealing with older people regarding their wishes is always a difficult thing. My father is 92 and doesn't even want to talk about power of attorney or a living will. He figures he'll live to 100 so he has lots of time. He's healthy so that's good. Your dad isn't healthy and he from what you have said either doesn't want to discuss things or hasn't absorbed what has been said regarding a vent. I would hope that it would have been discussed before last week. If he is going in for a feeding tube today I hope he does well but you really should try to get him to discuss the other matters when he is feeling better. It will be hard on your mother if she has to make a decision not knowing exactly what his wishes are. Good luck. AL.
 

CindyM

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Good luck today with the PEG, hboyajian. Hope all goes well for your Dad.
 

hboyajian

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Thanks for your thoughts and well wishes. Dad came through o.k. so far. He was resting and feeling some pain when I talked to Mom this afternoon. They are staying at the hospital overnight. I'm trying to manage getting some time off work later this week, but don't know if I can.
I don't want all my time with my dad to be wrapped up with discussing what to do about unpleasant eventualities, but I don't want him to be blindsided and unprepared either. He gets tired so often, that there are small windows of time that he can deal with planning and decision making. I've been reading him articles about ALS and he often falls asleep on me...I guess not a topic he finds uplifting. I think he got some more information from his doctor, and that may help him choose treatment options. I need to plan some fun things we can do as a family also. My son is really sad that grandpa can't sit up and play a game of chess with him anymore.
 

Al

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Glad to hear he is doing ok. AL.
 

alan911

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It seems states and countries have different laws, and different forms --- even names for living wills, medical power of attorney, and advanced directives. Our daughter insisted on proper and legal documents as soon as my diagnosis was made.
It seems that, unless I keep a copy of my advance directive in my pocket, EMT's or paramedics or ER folks may have to follow their own protocols against my wishes (although MY hospital may have a copy, but the nearest ER may not have a copy).
I should have researched this first, but I "think" if I supply the bracelet company with a copy of my Adv/Dir, they'll give me a bracelet with "DNR" that the medics will honor.
Has anyone had any experience along this line?
Alan
 

hboyajian

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Alan911, A friend of mine died of cancer a last year, and the EMT's did honor his directive while also helping make him as comfortable as possible. I don't know the details, but I think they helped him get through a breathing episode without taking him in to the hospital. This was on the day before he passed away. He and his wife had his papers at their home, and she was able to explain what was wanted. The EMTs were familiar with the family because they had been there before earlier in his illness. We live in a small town, so people get to know each other. I don't know what would happen if a person were to be out and about without a family member when an emergency situation occured, and the papers were not available. I might suggest to my dad that he make a copy and tuck it into the bag he always carrys with him (that is when he has updated his living will to reflect what he really wants it to say).
 

notgoingtotell

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As long as your father can express his wishes, he can change his living will. There is a lot of information on the internet about living wills and amending them. Laws differ by state, but I expect that there is a way the living will can be amended if appropriately witnessed, even if your father can no longer sign his name.

I'm sorry about your father.
 

alan911

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hboyajian, thanks for the info. I also carry a bag everywhere I go, and no reason I can't include a copy of whatever. Good idea. Sometimes the most logical things escape our attention. And that's why I'm here!
Alan
 
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