Mom won't use feeding tube.

[lisaohgee]

My mom is pretty much completely unable to move anything -- if she tilts her head back, she needs it tilted back forward. She can't move her arms, legs, etc.

She got a feeding tube in September. She will not use it. She still tries to eat normally, but she is having trouble swallowing. Her caretaker wants her to use the feeding tube, because she is extremely worried about her choking. My mom will not. She's down to 93 pounds.

I would have fully supported her not getting the feeding tube if she didn't want it. But to get it and not use it baffles me. She "says" she wants to live, yet she hasn't done anything she could to help prolong her life (bi-pap, feeding tube, etc.). It is obvious she is malnourished because she is losing teeth and she just looks malnourished.

I got a living will and power of attorney done for her, because she and my step dad have been in complete denial. I really hope they will actually sign it.

I don't know what I want out of this post. I just wanted to tell someone who might understand.

 

[abbas child]

Oh, Lisa (hope that's your name), what a tough story. Is your mother otherwise acting as though she's in good mental health? There is the FTD so many of us get, and then cannot make reasoned choices. Others here are caregivers for PALS with FTD, and will hopefully know how to ask you the right questions.

You are in the right place for support, and I hope there will be some information to help you. Meanwhile, my prayers are with you while you struggle with knowing how to help your mother... my personal shoot from the hip response, however, is that your mother will do what she will do. I hope other folks will have more encouraging words and advice.

Ann

 

[lisaohgee]

My name is Lisa.

She is mentally okay otherwise. What is FTD?

 

[abbas child]

Lisa, it is a type of dementia which often comes with ALS. If you do a search (white word in blue bar; click onto the word), you'll see it mentioned if searching under the word "dementia". FTD means Frontotemporal dementia. By your saying she's mentally okay otherwise, I assume she doesn't have dementia.

I'm sorry to see you don't have any other responses. While I don't want to be discouraging, I see this as your mother's choice, regardless of what she's said she would do in using the PEG. I know that in having such differing responses from her it must be hard for you. You have done, in getting together information and both POA and Living Will, what you can do. Now your parents must either decide to accept reality or go on in denial. I'm sure, as you know, this is a reaction to fear if denial is chosen.

Not with ALS but in other illness, I had to watch my folks react out of their emotions. After my mother's death, and some time passed, my father regretted not doing some things... but as a result, he did take care of his own affairs, for which we are all deeply thankful. Just saying I know the frustration in part... but have to give way to their own choices.

Hugs, Lisa. I hope this turns around on its own.

Ann

 

[BarryG]

Lisa, I'm sorry about what's happening with your mom and I wish I gad some answers for you but I'm sorry I don't. I do know that before I got my peg tube two years ago I had lost 40 pounds (from 160 to 120 and I'm 5'11) and was pretty much starving. When my doctors first mentioned me getting a tube there was no way that I was going to get one but I finally realized that I wouldn't survive for long without it.

Can you ask your mom if it would be ok if she took some formula and water through the tube in addition to what she can try to eat? She doesnt have to stop eating ( although maybe she does) but she can get a lot of nutrition through the tube and still eat a bit for the taste and eating experience. That is how I started and it really works. I haven't eaten anything by mouth in a year now and while it's not great it's not too bad.

If she does want to stay around then she will need to use the tools

 

[LornaDoone]

Hi Lisa.. I wanted to check and see how things are going. Thinking about you.

 

[Katie C]

I think maybe Mom needs to be reassured that it's not an all or nothing thing... just because she uses her peg doesn't mean she has to stop eating! Also... make sure her caregiver knows to thicken all liquids and perhaps start pureeing solids to help reduce the choking issues.

 

[lisaohgee]

Katie, my mom knows she can still eat. She just won't use it.

The overwhelming denial on both her and my stepdad's part is getting to the point where I think it's becoming dangerous. I am going to try and talk to my stepdad, and I've also arranged for the Social Worker to come out and have a meeting with us.

If she doesn't want to use it because she doesn't want to prolong the inevitable, I am fine with that. I will respect whatever decision she makes. But I don't think that's the reason. I think she just refuses to accept that she needs it.

 

[mybell303]

Hello..sorry to here about your mother...I was a caretaker for my mother as well. I think its all a quality of life thing. You said she couldn't move? Maybe eating is the last thing she has left that gives her some kind of control in her life. It was very hard for my mother to accept the fact that she had to depend on me, or anything or anyone else for that matter, to assist her. Whether is was with eating, a shower, bathroom, walking, ect... She was a very independent woman. My mother's weight also became an issue. When all she had left was the feeding tube(because she couldn't eat anything anymore) it was more an issue of nutrition. Maybe try to re-assure your mom that the vitamins and nutrients she needs will come from the intake of the feeding tube. Then, maybe, she can think of it more as a medical issue than an issue of losing her independence. I hope I was able to help a bit. I just recently joined this site and haven't really reached out to that many people since my mother passed, but I would just like to help if you have any questions.

 

[stephie]

Lisa,
When my husband had to decide if he wanted a PEG tube, we discussed the fact that he still had the right to refuse it once it was put in. We knew that it would provide him with the option and he did eventually choose to use it (he has not eaten for about a year). He continued eating much longer than he should have, though. He was choking almost every time he ate. He did eventually scare himself enough that he gave up on eating. As frustrating as it was for me to watch him choke, I knew that it was his life and his choice. All you can do is continue to suggest it, but she will have to choose it. She will definitely arrive at the point where there is no other option.

 

[JDM65]

My husband, too, had a hard time accepting that he needed to use the tube. He has had his j-tube for a year now. Looking back, he now says it was losing what little control he had over a small part of his life. It would take him almost two hours to eat 1/4 what he should have been eating, and he was choking multiple times during each meal. Our doctor told him he was using more calories to eat the meals, than he was taking in, so he went from 185lbs down to about 130lbs. I don't think he has had much weight loss since the tube went in. He now takes his morning coffee through it, and then the formula feeds, and all his medications go through it. It is so much easier on him.

It is a huge adjustment, and I can understand your frustration... I think your mom's issue goes deeper and you really need an "authority" figure to dig deeper for you to find out why. Perhaps the Social Worker will be able to assist you both. I will be thinking of you... good luck.

 

[Miss]

Lisa, we are going through the same thing in my house. My husband won't use the PEG, either. He let me put medications through it for about 3 days while he had a cold, but as soon as him nasal congestion cleared up, he made me stop. Meals take about and hour to an hour and a half. He is maintaining his weight right now, or at least losing very little because I spend the time needed to get the calories in him. It is exhausting, though. His doctor suggested that he get most of his nutrition through the PEG and save eating for his favorite things. Also, my husband is in some kind of denial, too. He will not sign a Power of Attorney (even though he has no real use of his hands), he has done no advance directives (even though we have met with the palliative care doctor twice now), and he will make no financial arrangements for the future. Good luck to you when you talk to your step father. I hope he an help your mother accept what is happening.

 

[abbas child]

Missy, that is so tough. I could cry for you, as these are things for your and your children's future which are so important. You are such a blessing to your husband, I'm sure he realizes it, even while denying what is happening to him. He seems unable to recognize that you have needs he alone can answer... and I know that you know everything already. I'm just heartbroken for you.

 

[Miss]

Ann, I don't know who this man is. The man I married would never have put me in the position to shoulder all of this. I find this behavior shocking. It is so contrary to everything we ever talked about. I am at a loss as to what course of action to take.