Advice for Private Care

[lovinglife]

My mom has Bulbar ALS and recently has lost so much weight she finally agreed to a feeding tube. This seemed to be the perfect solution, but it has made her more dependent on care from others as she can't feed herself due to the lack of strength and coordination in her arms. The feeding schedule is 6x over the course of a day. My stepdad has just been diagnosed with his own terminal disease and as he weakens from treatment I can see him less able to administer the feedings. We have a private sitter coming in to help my mom get dressed and she administers 2 of the feedings. But I'm curious what everyone else is doing for the rest. Insurance will not cover feeding tube feedings. She doesn't qualify for nurse care only home health for therapy. Medicare will kick in soon, but so far she is falling through all the cracks. I do them when I'm in town, but I live out of state. Any suggestions? Thanks.

 

[crystalkk]

Does she have a neighbor that might be able to help.

 

[hopealive]

We put together a " share the care" team. We had all kinds of family, friends, neighbors sign up for a shift. This was a great thing, for helping my mom, same situation as yours, and keeping her spirits up. So many people asked what they could to, and this proved to be IT!
I hope you have similar support around.
Later on down the road we did have to hire out of pocket help. They were also worth every penny. Her share the care team continued to come and were able to do feedings etc. throughout her illness.

I know it is hard,

Love,
Holly

 

[drmichelle]

What about continous feeding with a small feeding pump?

 

[lovinglife]

Do you have more information

I've talked to a couple doctors regarding the pump for tube feeding and I've done some basic internet searches, but I'm not as well educated on the details of pump feeding as I would like to be.
We specifically talked about using it overnight which I'm told would administer 2 feedings. My mom is hesitant on this idea for fear this will make her need to go to the restroom during the night and she will not be able to disconnect the machine. Do you have more information or personal experience with one?
Thanks.

 

[BarryG]

When I got my peg tube installed the nurses at the hospital connected me up to a feeding pump mounted on an IV pole. They put two 8oz packages of formula into the bag and let it go for a couple of hours and if I had to go to the bathroom I did not need to disconnect, I would just wheel the whole rig into the bathroom with me. Of course I am still pretty mobile and it might be more difficult for your mom to do this.

Something else might be to get a more concentrated formula than Ensure or Boost so that your Mom could get the same nutrition in less feeds. I don't know what she is putting into her tube now but if she was able to get away with 3 feeds instead of 6 it might make it easier to manage.

 

[Jennifer51]

Lovinglife I have a pump called by the brand name of Nutricia and the food is the same name. It takes a 1 litre bag of food for my whole days feed. Most people use it overnight, but you need to be slightly raised, and despite my reducing lack of mobility, I still like to wriggle a fair bit in bed, so dont want all the tube around me in bed. So I go for daytime feeding. The company make a special rucksack for the feed and pump so you can hook it on to a wheelchair for going out. My whole days food can go through in about 5 hours or you can split it up. It is very easy to unattach and turn off, but I would say, best done by a carer. Look up Nutricia or PM me if you have other questions