Old 01-23-2015, 06:30 PM #1 (permalink)
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Default New day, New problems. :(

Hi all,
My husband could not eat his dinner tonight, he could not get that damned spoon to his mouth. He tried, and tried, and tried. And got frustrated, frustrated and yup, you guessed it, more frustrated.
He said months ago 'when I can't feed myself anymore, no one is going to to do it for me!'
And he would not let me help him tonight...
I asked a few times it only got him more frustrated.
He finally just asked me to throw it out.
He has said he will not have a peg tube, will not take any meds, will not drink shakes I make him, no vent.
He says it will play out like it's going to.
I'm scared.
I feel helpless.
I feel like I am losing him too fast.
I am afraid he will let himself starve to death.
I don't know what to do.
Cheryl
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Old 01-23-2015, 07:00 PM #2 (permalink)
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Default Re: New day, New problems. :(

Being fed was a big one for Chris too.

When he finally agreed to it, he was amazed at how much better his swallowing was because he only had to concentrate on one thing. Before that, the effort of using the cutlery, getting it up to his mouth and in smoothly was so huge that he didn't realise it.

He allowed me to feed him after he fell and ruptured his shoulder tendon, but went back to doing it himself as fast as he could.

He already had the peg some months before he let me start feeding him.

I know how you feel, we want to take over and do what is best, but we have to sit back in many ways and let them make what we feel are poor decisions. It's one of the hardest part of being a CALS.

I wish I had an answer, all I have is understanding of how you feel xxx
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Old 01-23-2015, 07:08 PM #3 (permalink)
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Default Re: New day, New problems. :(

Let him know in no uncertain terms he is hurting and cheating you by his selfish actions.

I have transitioned my family from supporting them - to them supporting me for once. I have always been the glue that held it together. I want to stay around as long as I can, at least as long as they will support me, including possible vent. The peg tube and bipap have been great.
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Old 01-23-2015, 07:38 PM #4 (permalink)
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Default Re: New day, New problems. :(

Quote:
Originally Posted by Graybeard View Post
I have transitioned my family from supporting them - to them supporting me for once. I have always been the glue that held it together. I want to stay around as long as I can, at least as long as they will support me, including possible vent.
Graybeard, are you and my husband twins? He has always been our strength, and it is my honor to care for him now. He has recently said that he will accept a vent with certain conditions, for which I am greatful. I know that means that one day I will have to face the decision that no wife should be forced to make, but I owe him that.

Cheryl, my heart goes out to you. I agree with Graybeard--tell him how he is hurting you. If that doesn't move him, tell him that you are calling in Hospice since he's decided to die.
I understand about a man's need for independance (I may not always accept it, but I understand it), but when there is a simple solution, such as a PEG to keep you from putting the food in his mouth, and it extends life when there is someone who loves him and is willing to care for him, I don't understand not accepting that solution. Ultimately, however, you can't force him. I'm so sorry--I wish I could offer you some comfort. I'm praying that by morning he will have changed his mind...
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Old 01-23-2015, 07:45 PM #5 (permalink)
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Default Re: New day, New problems. :(

Cheryl, I so feel for you. Will he consider a straw so he doesn't have to lift shakes to his mouth?
My husband also refused the peg tube, the medication. He continued to lose weight till he was emaciated- and at 118 pounds, had no resources to draw on.
Like you, I wanted him to live and tried to encourage him to do the things that would prolong his life. A very wise psychologist at the VA clinic told me in no uncertain terms that ALS patients have so little control over their lives, that we must let them call the shots on how they want to live their lives. The hardest thing I've ever done was to back off and let him decide his own course. My role was encouraging, supporting, and trying to hang on to my sanity in the process!
I'm not trying to scare you (although every day with ALS is scary!) but you may have to let him play this out as he wants, and just keep loving him whatever decisions he makes. He may change his mind along the way- as my husband did after he aspirated and was hospitalized. He finally had the peg tube in and died that night. As I process (over and over) what I could have done differently, always come to the same conclusion. It was his decision and he was tired of fighting the battle. He died peacefully and I may question different scenarios, but know I need have no guilt about my caring, support and love for him. Like that old saying "we can only control our own behavior", so it goes in our situations. Do your best- but try to let go of the guilt, frustrations! I know it's impossible- but you really have no other choice. Hugs and prayers for you both.
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Old 01-23-2015, 08:50 PM #6 (permalink)
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Default Re: New day, New problems. :(

Cheryl, I think I know exactly how he feels. It's all so frustrating to be so helpless. Reading this makes me want to throw a plate of food across the room myself. One night of not eating won't hurt him and I bet he comes around and you two figure out a way to feed him. Each new loss is just so hard and he probably needs time to be angry and process what to do next.

God I hate this disease.

Hope tomorrow is better for you both.
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Old 01-24-2015, 02:33 AM #7 (permalink)
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Default Re: New day, New problems. :(

>Hope tomorrow is better for you both

thatreally is our only hope -.... IIWII ("It Is What It Is!") ...



Max - Saturday, January 24, 2015 2:33:09 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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Old 01-24-2015, 03:24 AM #8 (permalink)
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Default Re: New day, New problems. :(

Cheryl, I have to disagree w/ Nuts a little -- I think threatening to call hospice and/or guilting him further threatens the loss of control that he is responding to. If he wants to stop eating and drinking, hospice is not going to change that nor bring about a better death.

You can be calm and factual. If he persists, remind him that if he doesn't drink anything, he'll die in a few days and lose consciousness sooner, so who would he like to speak/visit with in that time? What affairs need settling? Any amendments to plans for a service/his remains/etc.?

Straws for shakes/soups could indeed hold him for a while if he wants to hold on. Is he tired of living? Before he hit the food wall, was he doing something every day that made him happy?

What you might also do if he doesn't relent is ask him to explain this decision to another person he might care about, so you don't have to explain his sudden death to that person. Amounts to calling him out more gently. He is serious or not. He will die soon or not. It really is his choice.

I know just having had this conversation whether he reverses course or not is devastating--the best and hardest thing to do is help someone with their own best ending, when you have to live on. But whenever that day is, I know you will, on both counts.

--Laurie
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Old 01-24-2015, 04:31 AM #9 (permalink)
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Default Re: New day, New problems. :(

I would ask Chris what he wanted. He wasn't always clear on it, because with ALS you are only making hard choices, not getting anything the way you want it.

Some PALS I have greatly respected have chosen no peg or bipap, and have passed very peacefully. None of this is what we want. I truly do not know just how much of what I would want if it had been me instead of Chris, but I would have wanted to say where lines were drawn and what I would accept.

It is the hardest part of being a CALS indeed.

In the first couple of days I would certainly try to just be very loving and supportive to see how he does make this adjustment of losing the ability to eat himself. If he does let you feed him be sure not to make too much a fuss of the fact, it may just embarrass him more, especially after the refusal on that first failed attempt meal.
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Old 01-24-2015, 05:03 AM #10 (permalink)
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Default Re: New day, New problems. :(

Laurie, you are so right, of course. Thank you for your response. Sometimes I get so angry with the entire situation that I misdirect my anger. I so hope I can deal with this with a fraction of the grace that you have--your guidance is such a blessing for all of us. --Becky
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Old 01-24-2015, 07:45 AM #11 (permalink)
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Default Re: New day, New problems. :(

My friends...
words cannot tell you how much I need this group. And the place to say what is on my heart without having to censor it in any way.
Knowing that you guys get it, and will give me some guidance is making me weepy this morning. I feel at home here.
I thank you all for that.
I know that he wil not change his mind on the pegtube or the vent. He may still change his mind on my feeding him, but that will remain to be seen I guess. I want to give him as much control as possible.
Is he happy? no.
Does he want to live like this? no
Does he do anything that makes him happy? no
Is he ready to die? I am not sure.
Hospice is already involved. I will continue to love and support him (hopefully with as few tears and as much kindness as I can.)

Thank you all for your love and support...
ox
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Old 01-24-2015, 07:57 AM #12 (permalink)
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Default Re: New day, New problems. :(

Cheryl if you aren't seeing a counselor it might be a good idea. They really help give you a regularly scheduled time to let it all out.
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Old 01-24-2015, 11:04 AM #13 (permalink)
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Default Re: New day, New problems. :(

Cheryl, I truly understand what you are going thru my husband (Randy) will not agree to a peg or anything else for that matter
It is heartbreaking to watch, but it is his choice.

Try to stay strong,believe me I know it is so hard.

Andrea
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Old 01-24-2015, 12:56 PM #14 (permalink)
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Default Re: New day, New problems. :(

Cheryl, reading this thread brings tears to my eyes. He feels powerless. You feel powerless. I won't add any advice because so much excellent, seasoned advice has been given, and I have nothing else practical to contribute.

I see it from both sides. You don't want to lose him any sooner than you have to, especially to his pride. Yet I am stubbornly independent. If I become diagnosed with ALS or another terminal illness, I will probably kill myself before I have to depend on anyone. But I won't know until I get there. And I'm not married and have no close family, so I have room to be more selfish. (Of course, I'm taking care of Patti now, so were I diagnosed tomorrow, I'd have to tough it out. Commitments to others changes things.) ... Ramble, ramble, ramble. ...

I guess what I'm saying is that your and your husband's situation today just sucks and tears apart even my heart just reading about it. And you're living it. Wish I could give you a big hug. That's all I've got. Here's a virtual one: <HUUUUUUUUUGGGGGG>
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Old 01-24-2015, 01:55 PM #15 (permalink)
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Default Re: New day, New problems. :(

Please keep us updated, you are doing a brilliant job.

We become family here. Sister hugs xx
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