Dad has ALS-5 Yrs -- one info required

[aman_pec]

Hi All, This is my first post on this forum. My father has been suffering with ALS for last 5 years and he's on intrusive mechanical ventilation for last 3 years at home. Myself and my mother provide care to him and we have to do awful lot as you maybe very well aware. I require one information regarding one problem we have to face. My father has problem in bowel movement and its not possible for him to pass stool by himself. We give him a tablet of glycerine through anus. After 2-3 hours when he feels like passing stool, we have to take him to the commode and still we have use hand/finger to make way for it. Isn't there any tool or any better method available for this? Any information in this regard will be highly appreciated.

Also, what can be done about the excessive saliva. We belong to India and here, even though medical support system is good, still for terminal illness like ALS, healthcare system does not encourage carrying on the way we are doing at present. its been really hard out here because when we consult specialists, they are very pessimist to begin with. Most of their advice hovers around one thing - this is terminal illness, why do you want to continue the torture of your father as well as yourself. Due to such problems, I am facing problem getting right information that can help my father and us all lead a better life.

 

[CindyM]

Hello aman_pec. I am sorry this is happening to your family. You ask the very type of questions that pur PALS and CALS are able to help with. I look forward to hearing what they have to offer and to hearing more about how you resolve these difficulties. Welcome. Cindy

 

[Al]

Hello aman. Is your father using a feeding tube? If so have you tried giving him fruit nectars in it? If he is able to swallow these drinks are thicker and sometimes will help to soften the bowel movement. Can you get psyllium there? It can help with constipation.
For the saliva some people use a drug called Elavil. Is it available there?
Hope this helps.
AL.

 

[aman_pec]

Thnaks for the replies.. my dad is not on feeding tube as yet. When we admitted him to hosp for the first time, they did put a feeding tube but on discharge, it was taken out. they said we should got for PEG when oral feeding will become too difficult.

Will check out availability of Elavil, Psallium is available out here. Do I need to consult docs before giving Elavil or it is safe enough to be used off the shelf? One thing more, is there any alternative available for digital stimulation for passing stool?

I really appreciate the replies.. really it gives such a comfort that there are other people fighting it out. This is the first time we have come in touvh with ALS community and it does make us feel better.

Thanks
Aman

 

[liz]

Aman -

There is a stool softener called Colace or Docusate which might make it easier for your father to pass bowels. Here (in the US) it is sold over the counter. Elavil, on the other hand, requires a presription. Good luck.

Liz

 

[Kewanee]

See if you can get something like Polyethylene Glycol or store brand in USA is Mirimax.
Start every other day. It pulls water to the colon and often this is enough to help.

Kewanee

 

[Lorie]

MiraLAx

Hospice put Timothy on MiraLax about a month ago. It works great. Please read link.

http://www.miralax.com/faqs.html

Lorie

 

[aman_pec]

Thanks all, I will have this discussed with the doc and get the prescription of the drugs mentioned by you all. Many thanks..

 

[Tom]

My mom has the same problem with having a bowel movement, she does not have the strength to help herself push at all. At the current time she is taking Lactalose every morning. If she dosn't have a bowel movement, then we give her a suppository every other day. After she does have one she is very weak, it takes all her energy just to go to the bathroom. I know how frustrating this can be for the both of you.
Teresa