back at square 1

[danthecaregiver]

We took hospice up on the week of rest and rob went into a care fac. when we got back his condion was shocking. So now we have try and get some liquids into him he hasnt eat, lost alot of weight and he can barely swollow. when i feed him he starts couphing and just cant stop. its bad and to the point i have to drug him up so he wont freak out. and stop trying to couph something he thinks is flem but is really just spit.. :-(

 

[luvnmm]

Dan, I am so sorry that Rob isn't doing well. I take it that he doesn't have a PEG? What are you drugging him up on? Have you talked to the ALS team? Maybe they have some suggestions?

 

[danthecaregiver]

its adavan and no i havent

 

[danthecaregiver]

rob is doing terrible since the stay in a facility, he still hasnt eatn and just getting small amounts of fluids down. seems to me he is in a huge depression. the couph is whats real bad and i have tried everything. a speech theripst came out today and gave us some pointers. I would reallu like to know about the peg tube is it most everyone with als gets one eventully are there any fact of what the numbers are. he said in the begging he didnt want one butnow he is just so tired of the eating and couphing.. and he is a bit dehidrated plus a blatter infection, hospice is definatly not recomeneding one. any anserws?

 

[abbas child]

Dan, here it is. I hoped it would be seen more in this section.
Ann

 

[Katie C]

Dan... is it possible the Atavan is causing some problems. I know Glen can't take it... it becomes HIGHLY anxious and agitated. Instead, they have me increase his seroquel dosage. Just a suggestion. I'm sorry things aren't going well.

 

[danthecaregiver]

is this the response i get, over 200 veiws and i get 3 responses this chocking aafter a drink or food cannot be that odd. I am saying this man is doing terrible and i need some good advise, his urine was so strong last night it was dark orange. hospice doesnt do iv's and they seem to think its him doing this to get back at leaving him in the fac for a week. i know all of you can do better than this, thank you abbas+child i appriciate your help.

 

[abbas child]

Dan, I'm by far not the best person to help you. But I'm here. I think if Rob wants a peg, his doctor should be told as soon as possible, and get the procedure set up. It sounds like Rob has changed his mind and does want the peg, so I hope you all can get it soon. And, yes, to answer your question, I believe most ALS patients do get the peg.
God Bless you for helping him and sticking with this. Ann

 

[sadiemae]

Dan, a PEG is the way to go to keep him hydrated. Until he can get it, try watermelon, my husband gets it down easy. Also, I buy Luigis Frozen Italian ice at Walmart, come in a 6 pack for less than 3 bucks. My husband also loves vitamin water, I freeze half bottles of it in the freezer, so it is like a slushy. He can not get water down at all, but can do the vitamin water. Giggle Dr Miller ALS, he has a lot of statistics on the guideline for care of an ALS patient. Or do a search here, as I have posted a few of his articles. HUGS Lori

 

[Ladyinn]

Dan, I am so sorry that you are having to deal with this dreaded disease as a CALS. While I haven't (yet) experienced swallowing and choking problems, my husband did before he died. We found that keeping him hydrated, before the PEG, was our biggest challenge. I bought a thickener from Walgreens and mixed it with Chai tea or tomato juice and that helped get the liquids down. He said it wasn't bad if it was good and cold but still not as good as scotch on the rocks!

He also drank cranberry juice with thickener and I bought little juice boxes of thickened water with lemon and kept them in the refrigerator - they worked well when we had to be gone from the house for doctor appointments, etc.

Good luck in your fight to beat the disease - or at least stabilize things again.

Blessings to you both,

Diane

 

[hopeful warrior]

Dan, have you talked to the ALS team yet? I really think you should ASAP. They need to know this is going on.

My husband has a PEG tube and it has been wonderful for him. He can easily get his fluids and food supplements, as well as meds.

I am so sorry you are going through this. I know it is horribly frightening and heartbreaking. Please talk to your ALS team if you haven't already.

 

[Flowerchild]

Dan my husband went thru that a year ago, he choked on everything. He did get the peg tube although he always said he wouldn't do that. He had to have IV before it could get scheduled so he wouldn't dehydrate. I'm sorry I don't know of any tricks to stop the choking I know u feel helpless. The feeding tube has been great and very little problems. He had a trachea put in at the same time and that has been a different story. We did not about how difficult it would be to care for, not that we wouldn't have done it but were not at all prepared. The only reason I mention the trachea is that I think those two often go together while getting the feeding tube gets him the nutrition and hydration he will still choke on saliva or my husband did. This is my first post as I was looking for advice on handling the depression and frustration as a caregiver and saw your post.

 

[Twinsmom]

Dan,
I'm terribly sorry you are having to watch someone you love struggle with this disease...I have questions more than advice-hopefully they will guide you toward some solution.
*I see you have hospice involved-does that mean he is CLEAR about how much medical support he's willing or NOT willing to pursue? Sometimes, as our situation changes we are more willing to consider things we didn't think we'd consider before
*Has he committed to not having a PEG? If so, then there really isn't much you can do put possibly try some thick-it to help get some liquids down. If he is open to the possibility...then I would get him to the ER and have them put him on IV fluids to get him hydrated and in for the peg.

Peace,

 

[danthecaregiver]

he has been using thick it for some time now, he is unsure about the peg tomarro we plan on having a talk so much going on during the day totally wearing him and me out, he had 3 glasses of fluid today still hasent eaten anything for a week. thank you all for responding. i was in a real ringer earler for that i apoligize. God bless you all and thank you for the prayers. danny