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LovemyPALS

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Nov 21, 2009
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Lost a loved one
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US
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Texas
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Little Elm
what do you do when your PALS doesn't want a feeding tube and breathing tube? He wants to be sedated. Which means, when he is sedated, we say 'goodbye' but he is still hanging on unconscience? what a mind mess!

Suzanne
 
As hard as it is, you let him make the decision.
 
Sorry Suzanne! My prayers are with you to help you through this difficult time. Like your Dad, my Mom doesn't want PEG or trach. She is on liquid diet (for 2 weeks) and having difficulty with her tongue movement and swallowing. It's a chore to get her to consume liquids. She hasn't been referred to hospice yet. I suspect it will be soon...not looking forward to it.
 
Rose... may I ask why you are not looking forward to hospice? They were a wonderful help during Glen's last few months and during my mom's last few weeks. Glen also chose (very early on) to not have a peg or trache. As it turned out, with his dementia, they would have just been another set of problems for him.

Suzanne.. my answer to you is the same as Missy's... you respect his wishes. You spend his last days/hours with him talking to him, playing his favorite music, making things as peaceful as possible, and taking advantage of having the opportunity to say good bye. We played my mom's favorite movies on the computer in her room even after she was in a coma... just in case she could hear. (She died of lung cancer) Hospice will have emotional support available for you as family members as well as medical and emotional support for your dad.
 
OH.. one other thing.. Rose... if your mom is having trouble with liquids, are you sure they are thick enough for her? Thicker liquids go down more slowly, giving her more time to control her swallow.
 
OH.. one other thing.. Rose... if your mom is having trouble with liquids, are you sure they are thick enough for her? Thicker liquids go down more slowly, giving her more time to control her swallow.

Katie,
Mom's speech therapist gave her some Thick It, to which she just makes faces at...then she gave Mom some Simply Thick. Which Mom tolerates much better. Mom complains of liquids being too thick, which is kind of nice. It's a lot easier to thin liquids than make them thicker. She insists on drinking water which we all know is too thin and should only be done only after she's brushed her teeth. She's starting to realizes she's choking too much on water and needs to switch to thicker liquids. Every day offers something new with this disease.
 
When my mom told me she didn't want a feeding tube she just said "I would get it if it was going to help me get better, but it won't, so I don't want it" How could I argue with that? We had to respect her wishes and I know if I had tried to talk her into getting one, she probably would have - not for herself but for me. My mom did so much for me my whole life being both parents (my dad died in a vehicle accident when I was 11), I couldn't ask her to do yet one more thing for me. People who knew my mom or I tell them about her, all said it is such a brave decision to make. Be at peace with your loved ones decision - weather to get a peg or not - for your own peace of mind. My mom has been gone almost 10 months already. I do still wish she had tried the PEG, she might still be living, but not at all how she wanted to live.
 
Rose, my PALS can not drink water, but for some reason can drink Vitamin water. The speech lady thinks maybe because of the flavoring it is drinkable for him. I put it in the freezer and half freeze it like a slushy, or he drinks it on ice.
 
Macdonr, very well said! I know if I would ask Mom to get a PEG she would, but it wouldn't be living to her...her words.

Sadiemae, thanks for the tip, I'll pick up a bottle of vitamin water today and see how that goes. She says water tastes awful to her these days...she knows it's her taste buds cuz we haven't added anything to her water...
 
"She says water tastes awful to her these days...she knows it's her taste buds cuz we haven't added anything to her water..."

If she is taking Rilutek then that could be the cause of the bad tasting water, it sure did for me when I was taking the pill by mouth.
 
Suzanne- I have to agree with the others. As hard as it is, we have to respect what our PALS want. Some people find living with ALS easier than others. Some folks are dead set against prolonging anything. If your dad made this decision and is of sound mind, then it must be respected. Now, I understand that is a lot easier said than done because even though we know the end may be coming, it is natural to want to prolong it as possible. Like the others said, take this opportunity to really tell your dad how much he means to you and how much you love him. The whole process will be much easier on him if he feels he is supported in his decisions.
God bless and good luck.
 
"She says water tastes awful to her these days...she knows it's her taste buds cuz we haven't added anything to her water..."

If she is taking Rilutek then that could be the cause of the bad tasting water, it sure did for me when I was taking the pill by mouth.

Barry,
She's not taking Rilutek, way too expensive for her. She does have 1 high blood pressure pill she takes daily. I suppose it's possible that could cause her saying everything tastes awful.
 
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