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cyn when you did legal papers didn't DH sign his advanced directive? If so did he choose no mechanical aid in living? Of course you want him to be here as long as possible I don't know why we all seem to be afraid to talk openly about dying. We are all going to do it I totally understand what your DH is saying about 'is this living'. Give him a hug for me tell him that is from the Hoosier farm girl knowing what he is saying. Now here's yours {{{{{{{{{{{{{{{{cyn}}}}}}}}}}}}}}}}
Hope Amber gets along well and y'all get to see that new baby granddaughter really soon.
Thanks Jaxson--sure needed that hug girl!
Yes, we have already done the advanced directive and he did choose not to be hooked up to any machine to keep him alive but you must understand there are many other new ways they keep people alive now days that does not include being hooked up to a machine....and in some instances it is a good thing--in some it is not. The feeding peg which we have already decided he will try and that will problably be happening soon now but getting a trachea is still not a for sure thing. The more my DH feels trapped in his body the less he wants to try to continue on. Sure we pray for a cure but we all know even if it ever happens the chances are that it won't happen in time to help him now. We got the sad news today that he has lost more weight...It's taking every ounce of my strength to keep from breaking into tears but that won't help him so I'll just keep trying to find something he can still eat and swallow. Personally I don't care if I ever eat again--I am so bored and so stressed over trying to figure out what to prepare for meals that he is able to eat and I am sure he is too.
So he is going to have to decide if he wants the feeding peg so that he can take nourishment....or if he wants to refuse "mechanical life supports".....and let the disease take its course. I know you said that you had already decided he will try the peg.....but it is all negotiable until it happens.
Cyn you need to realize that its not that you cant figure out what to prepare for meals....so that he can eat.....his ability to chew and swallow food is in decline and you could have advanced degrees in cooking for als patients....but a time comes for all of them when they cant safely chew and swallow. I worked with profoundly handicapped young people at one time and several had feeding tubes.....(they didn't call them "a peg" back then)...for those patients even the aroma of food could cause excessive salivation and require suctioning of the saliva so it wasn't inhaled.
Don'[t for a second think it is an inadequacy of yours....it is the disease that is keeping him from eating and causing the weight loss.
Still hits me very hard--blame/fault whatever it is that is happening it hurts me badly. I know I knew it was coming--I really am pretty informed but it still hurts and hurts and hurts. It's not my fault--I know that but it hurts....Tomorrow will be better.......
I can no longer even watch sad movies so reality is very hard if not near impossible--but we do what we must...one way or another. Get up and shake it off--right?
Right! My mother had IV bags full of white milky stuff that would go into a "port" (perhaps it is called a peg now??? )to feed her when her cancer advanced quickly & she couldn't keep weight one. We were raised around horses so we took turns going down to her place in the evenings to hang her "feed bag". It was just a joke but it helped us cope with it all a little better.
The good Lord knows and so do we you can't afford to lose weight either girl so maybe you should drink some protein shaky things. Or buy a gallon of ice cream off the Schwan man and make shakes for both of you in the evenings mix up a tablespoon of peanut butter for extra protein.
You're doing the best you can and that is all that matters hear me missy?
Smile--you are so funny elston!
Thanks for the share Jaxson! Sometimes just reading how others handled their own situations makes our own not seem so bad. At least with the feeding peg today it fits under your shirt and you can't even tell it's there. I've seem patients at the ALS clinic use them when they eat--at first it was difficult to watch but after awhile you just have to realize it is just another way to get food into your body for survival. It's very common with the people at the clinic--because it is a pretty common part of the course with ALS.
Have a lovely day everyone!
A very long stressful day. Work sucks--excuse my language but it is the only way I can really describe it right now...I work long hard hours and no one is buying much and when they do buy they want it for for nothing. As much as my sister can upset me she still is always there when it comes to the animals...smile! Bless her heart--she can't get coupons--like me--same boat, ha! So she sent me some cash with a note saying this is for food for the babies. I love her even though she can anger me at times. Believe me, I will take the money and go an buy nothing with it but cat food. These little buggers are eating like crazy cats lately--guess it's the winter cold coming or so that is what my DH tells me. Being from CA I haven't experienced this with my critters and I guess when I lived in Big Bear I didn't really notice--my mind was on other things....teenager things. Anyhow her little gift was very appreciated and my kitties will also appreciate it. She does have a good heart!
Last edited by cynwldkat; 12-17-2013 at 04:26 PM..
I can smell her roast from here and she didn't invite us
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Now here's yours {{{{{{{{{{{{{{{{cyn}}}}}}}}}}}}}}}}
We got the sad news today that he has lost more weight...It's taking every ounce of my strength to keep from breaking into tears but that won't help him so I'll just keep trying to find something he can still eat and swallow. Personally I don't care if I ever eat again--I am so bored and so stressed over trying to figure out what to prepare for meals that he is able to eat and I am sure he is too. 
so maybe you should drink some protein shaky things. Or buy a gallon of ice cream off the Schwan man and make shakes for both of you in the evenings mix up a tablespoon of peanut butter for extra protein. 
