Need advice...when to start tube feeding

[lms9258]

Hi everyone,

I've been reading on this forum since November, but I now have some questions that I know only you all will be able to help me with.

First I think I need to give some background history. My mom who is 74 was diagnosed'ed with frontotemporal dementia (FTD) in May 2007, and ALS in July 2009. She is single, so my siblings and I take care of her in her home. I am there 4 days per week, and also handle everything else that's not related to the actual hands on caring. 2 other sisters split the other 3 days, and another sister and 1 brother help out when they can. Without going into much detail--because that would be under a thread concerning rants and raves--they all question me about everything, as well as offer their opinions. As you all know, with ALS it can be very difficult at times to come up with the best solutions for the seemingly endless issues that arise.

My mom got her feeding tube last Wednesday, Jan. 13. She had one formula feeding in the hospital. Her swallowing has been going down hill for about the last 6 months, but she is still eating by mouth. We try to give her mostly soft foods, but she does eat other stuff, like crackers, noodles, etc...and she loves Hershey bars. About one month ago, she was eating a fish sandwich (no bread, cut up into small pieces), and started choking so I did the Heimlich maneuver on her. This really scared me, and I always feel anxious when she eats now. Someone always sits by her when she eats because she is very impulsive due to the FTD, and will keep putting food in her mouth before she swallows what's already in there.

In trying to decide the best way to switch over to tube feeding completely, I thought we would continue her breakfast, dinner and snacks as usual, and start doing a tube feeding at lunch. This way it wouldn't feel like food is being taken away from her all at once, and it allows enough time while the home health nurse is coming for 5 people to learn how to do it. Please keep in mind that her decision making capabilities are very challenged due to her dementia. So far, 2 of my 4 sisters have questioned the need for the lunch time feedings. One of them is only with her for 4 meals per week, and the other usually visits for a few hours per week and stays overnight about twice a month.
My mom goes to a certified ALS clinic, and I did not get one good answer from that whole team of people when I asked about what to do. So aside from 2 sisters that think my mom should continue eating everything by mouth, I don't know what to do.

My question is for PALS and CALS. At what point did you start partial or complete tube feeding? Was it gradual or all at once? Did any other caregivers have to make this decision alone?

I would also be interested to know if anyone reading this is in a situation where so many other people's opinions, questions, gripes, etc...are always coming at them. I am the most timid of 7 children, and worry about having to continue dealing with them if I say something that makes them mad.

Sorry this post is so long. I look forward to some good advice, and I thank God for this forum.

Laura

 

[joelc]

You are the primary caregiver so the decision is yours, I think what you have suggested is the way to go. Start her off like this and increase tube feedings when you think they are needed. It will make both of your lives much safer and easier.

I know you are in a hard situation with your siblings but you are the best one to make this decision. They have to accept that.

 

[Twinsmom]

Dear Laura,
I agree with Joel... As the primary caregiver, it should be your call. Sounds like a "team/family meeting" is in order though, to get everyone on the same page. The last thing you need is to have everyone second guessing decisions, and you beginning to doubt yourself. I also have a thought for you to consider...If you are not documented somewhere legally as the healthcare proxy or given medical power of attorney, you may want to consider getting something official. With 7 siblings, even with the most cooperative energy, it would get overwhelming and confusing.

Feel free to rant, any time!

Peace,
Melody

 

[BarryG]

Laura, first let me say how sorry I am about what is happening to your mom. I am just about completely on my peg tube now with only my morning smoothie and even that is getting hard to do. For me it was a gradual transition, when we (my wife and I along with the ALS clinic dietitian) decided that I wasn't able to eat enough by mouth we knew it was time for the peg. Once the peg was put in I started using it as a supplement to what I could eat and then I just kept upping the tube feed and reducing the mouth food.

As far as who should decide, if you are the primary caregiver then you should be the one to decide what she eats and when.

 

[lms9258]

Thanks for the replies.

Joel, your reply put my mind at ease with the decision I made.

Melody, I have often thought about having a family meeting, and I am finally going to plan the dreaded thing. My oldest sister has medical POA--the one who visits once a week. My brother who is POA of finances and such, told me I will have to talk to her about changing it. I know I sound like a big fat chicken, but there are power and control issues going on with some of my siblings. Not much "cooperative energy" going on here.

Barry, your situation sounds a lot like what will probably happen with my mom.

Thank you all,

Laura

 

[brae0000]

every time i review this forum i admire more

 

[BarryG]

So the spammers have found a way to put in a link without the mods catching it. Put it in your signature! Where the heck is egy anyway!

 

[joelc]

Good catch Barry, I usually catch those but missed this one.

 

[BarryG]

brae0000, thanks for the kind words, I admire everyone on here too. So much courage and support!

Joel, anytime I can help, buddy! :smile:

 

[BarryG]

Found it! It is the city of Benha in Egypt

benha egypt - Google Maps

 

[sesl]

Laura,

My mother has 3 peg feeds a day, but she has them in between her regular meals, which are now quite small. She eats soft food (purees of whatever the rest of the family is eating) for her meals, and she has a peg feed at mid-morning, mid-afternoon and after dinner.

Maybe this is a compromise you can reach with your family if they think your Mom should continue eating normal food for a while, or if some of them want to give her more regular meals when they are "on duty."

sesl