I understand, but don't know what to do...

[sylviagzz]

Hi there,

My mom was diagnosed a few years ago. She has a feeding tube, she has a traq so is on a respirator, folley... she is bed ridden and has partial movement of one arm.
She can't talk, and it's harder every day to read her lips and figure out what she's saying (which really upsets her).

Lately, she has been trying to unhook the feeding peg, so we have to watch her really close. I think she wants to starve to death, She's deppressed, and spends a lot of time not talking to us, I think she's upset because we keep taking care of her.

I'm tired, and feel so bad for mom, but I really don't know what to do... how do I help her and make her understand that we have to take care of her even if she doesn't want it...
Sylviagzz

 

[vickim]

Hi Sylvia

This may sound harsh and I am so sorry but have you and your family asked her what she wants? I am sure you all are tired. And you are a strong and loving daughter. You take good care of her and I am sure she appreciates everything you do.

This is a horrible illness and it is hard one everyone involved. As I have said in other posts I think it is hardest on the caregivers. I think you need to have a long talk and see what your mother wishes. You may not like what she has to say, but you need to listen.

I wish I could give you more comfort. I am sending strength and love in prayers to you.

 

[Katie C]

"we have to take care of her even if she doesn't want it...." Why? What does your mom want? Why is it ok to not respect her wishes?

 

[Jane]

I am so sorry for the hard time you and the family are having. Being a caregiver is a tough position.

Perhaps you Mom is done fighting this awful disease. If so please try to find the strength to continue supporting her by accepting her decision. I know that will be one of the hardest thing you will ever have to do.

I know a young man with ALS, who for many years had all the assistive devices your Mom has. He decided to have his trach removed, His passing was peaceful and also quick. His family was with him, and ultimately felt good that his struggle was over.

Hope this is of some help to you

Jane

 

[rosec]

Have a conversation with your mother, and honor her wishes.

 

[Nighthawk]

Hi,

While I do understand the burden this ALS disease puts over the shoulders of caregivers (CALS), I also understand that some PALS just get overly tired of fighting this disease and, they might want to end that fight. I am not saying that this is necessarily your mom's case but you should check with her and see what her true wishes are and honor them.

Just an opinion.

NH

 

[sylviagzz]

Thank you all for your responses...

We have talked to her, and she has made it very clear that she is tired and she doesn't want to go on,... but, I didn't know we had a choice...

It seems like you guys are saying that she can ask to either stop eating or taking her traq off?

But, isn't it against the law to do that? won't we all get in trouble for allowing her to pass as she wants?

sylvia

 

[Nikki J]

Your mom should have hospice services. They will help you through this and protect you from any undue consequences. I do not think it is against the law but I have heard cases where an overly zealous official tried to make trouble for a family (the cases I know were not als)
Hospice should bring much needed support anyway
I am so sorry this is so hard. We let my mother go last year but we did not have to withdraw treatment as she chose not to start it but it was still hard.

 

[Nighthawk]

Thank you all for your responses...

We have talked to her, and she has made it very clear that she is tired and she doesn't want to go on,... but, I didn't know we had a choice...

It seems like you guys are saying that she can ask to either stop eating or taking her traq off?

But, isn't it against the law to do that? won't we all get in trouble for allowing her to pass as she wants?

sylvia

Hi,

I see your point but, let me ask you this: Long before getting worse, did you mother leave her Advance Directive in writing and certified by a Lawyer stating what her wishes are and what she wants when the final time comes or approaches?

If she did that, then you should follow her wishes. If she didn't, then I don't know what to tell you as I am not an expert on legal issues.

I hope other forum members with more experience would chime in with some advice.


NH

 

[Barbie]

I would find it hard to believe that the courts would come after you--but you never know. I think your family should consult an attorney to see what your options are.

This is a thought--she has partial movement of one arm, so she could (in theory) remove herself from the trache.

I am so sorry your family and your mom especially is going thru this....

B

 

[LizT]

It is NOT against the law to have the trach removed. However, a dr MUST do this. You cannot legally. Once a person is on mechanical life support, it is their right to have it removed at any point. Unless the person is not of sound mind to make this decision.
Im sorry to put this so bluntly, but it is much easier on the PALS to have the trach removed than to starve to death. In the event that the trach is removed, the doctor will induce a coma, so she will not be awake, nor aware of what is going on. It of course will be hell on you, but if this is what she wants, it is best to follow her wishes. My fiance lived 10 years with it. 7 years on a vent. He didnt know he had the choice either until about a month before he died. (He didnt have his disconnected, it was just a coincidence that he passed so soon afterwards)

Anyways, talk with Mom and talk with the D o c t o r. She can be made comfortable and have her wishes followed thru with. Best of luck

 

[SMP51]

wishing your strength through this difficult time knowing these kinds of difficult decisions are in our future as well one day

 

[Nighthawk]

Remember, before any decision in regards to your mother's life can be made, always check with a good Lawyer, just in case, because you never know.