trying to cope with this....

[danthecaregiver]

well robert has taken another turn down the latter, This new has us all on the downside.

his wife is ready to go around the bend. everyone is tierd.

Robert started this morning with breakfast just fine only eat the berries, cerial makes him choke, so i said ok we will eat something in a couple of hours. got him on thje toilet and here we go, wants me to get a cup so he can spit, starts couphing and spitting up, he thinks he is not going to be able to breath.

We are going to look seriously about a feeding tube but for now? go crazy and find someone to hold a cup................

 

[4mymom]

Dan,

My mom had her feeding tube placed just a little over a month ago and has done very well with it ever since. Since then, she's been coughing more and has a lot of extra saliva. We've been using multiple wash clothes throughout the day to wipe away the spit, and often, especially in the evenings, we may have to do it every 5 minutes. I understand how that can weigh on you...I go through it also. I've found that a couple of small drinks of caffeine free ginger ale or some tomato juice or even a sip of pickle juice (shaking your head, i know!)seems to help a little with the excess saliva. I'm not sure if it's the acidity or what, but it seems to help minimize the saliva (at least for a while) in our case.

Hope this helps!

Chris

 

[k600xlt]

Hi:

There are different types of medicine your doctor can prescribe for excessive saliva. My husband tried a couple of different ones, but he found that they dried him up to much. If you find the right one it can be very beneficial. The ones my husband took were for motion sickness.....i think it was called Dramamine....sorry for the spelling. My husband was diagnosed June 2009 and just recently passed away April 24 2010.

My thought are with you!

 

[tdamess]

i am so not looking forward to this - saw my son choke for the 1st time last night at a family party and i knew i could do nothing but watch knew he wasnt choking on food after he left party and 5 of us sat at a table my daughter started to cry and all 5 of us ended up crying .. glad we were able to hold off till after he left , if only there was a way to beat up a.l.s. i would beat it to death

 

[brooksea]

i would beat it to death

I'll help you!

 

[luvnmm]

Dan -

I know the decision is a hard one...I'm not looking forward to it with my mom. I'm sorry about Robert. Please keep us posted on any changes.

 

[danthecaregiver]

hello well the chocking stoped 4 a day , he was contapated for a day and had other thing he was thinking about. I cant help but think this chocking is all in his head. Poor Rob but ill tell you this job is gettn harder 4 me but i will stay with it a man is only good as his word.

 

[brooksea]

Does he have a cough assist machine and suction device?

Don't know if this would apply to Rob, but my husband will really start with the choking if there is something in the air that he has become sensitive to (such as mildew, dust or smoke).

He uses Atropine drops under the tongue for excessive saliva.

Rob may need a swallow test, to make sure he isn't aspirating.

 

[Phil M]

Before I got my peg. The easiest things for me to eat was Ensure, and soup that has been through the blender. Don't knock it...blender soup is really good! Might have to add a little water to it. And pudding makes a good desert!

 

[melalthia]

hi dan
i feel your pain. My mom chokes and coughs all the time now. I am about to have the PEG discussion again but expect resistance. When she choked on some food at a family dinner last sunday, she started bawling when i told her that it may be coming to the point where she won't be able to take any liquids or food orally. I stayed dry eyed and just tried to comfort her but its so hard to see her go thru this. So hard.

 

[ghii]

Dan,

I read about you all crying and cry also.

One thing never occurred to me when my husband refused the feeding tube - that one day he would not be able to swallow and feeding tube is not something which can be inserted on the spot. He went a week without being able to swallow liquid much less solid and worried about starving to death. His wound is healing and he is taking very well to the feeding tube.


ghii

 

[abbas child]

Dan, look for your newer thread under the "ALS/MND Caregiver Support Group"--please. Top of this page, click onto blue title, ALS/MND Support Group Forum... and you'll see the list of sections. Caregiver section is near the top of the list.