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mnmama4

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This is my first post. My mom was diagnosed with ALS in March of 2015. It is difficult for me to see her progress as we live 600 miles apart. She told me before I got there to be prepared as she had really declined. But when I saw her I did not think her "decline" was as bad as she made it out to be. She HAS lost more weight. At her last ALS clinic (a few days before I got there) she was told that it was probably time for a feeding tube on a bolus status only. She has NO problems with swallowing or breathing. I asked her why she does not eat and she says "I just don't feel like it." She also refuses to do other things that are suppose to help her. Like, wearing support socks and wearing her shoes and braces. She flat out refuses to do the things that will help her. Is this normal? Is she giving up?
 

Lkaibel

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I am very sorry about your mom. She may be depressed, she may just have trouble accepting what is happening to her. Physical decline is the inevitability of ALS. Loss of appetite is normal too, and it is important to keep weight on to the degree it is possible. If you are 600 miles away, who/what is her support system? Sounds like she could use some help and encouragement to feel as good as she can in the now.
 

mnmama4

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She has a lot of support. My dad and sister are right there with her. I talked to her about depression and she does not think she is. I told her that maybe she was but did not realize it. She has been on anti-depression meds in the past and she says she does not like how they make her feel. But I convinced her to try them again and tried to encourage her to take them longer so her body gets used to them. She just seems to refuse all the things that suppose to help her.
 

Atsugi

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One word of advice, Mama. ALS has removed her choices, her independence. Someday, she won't even have the choice to scratch her butt or even to take a deep breath. So for now, free choice is really important to a PALS.

When you're encouraging her to do what you think she should do, keep in mind that your encouragement might actually be stressful to her. It could put a strain on the relationship. Since you can't save her from dying, at least know that you can help her be...less unhappy...on the way out. My advice is to focus on having a good relationship.
 

KimT

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I understand what Mike is saying but I do think Remeron would help with depression, getting a better quality of sleep, weight and appetite. It is her choice but there is a drug out there that helps. Remeron is an antidepressant that doesn't have some of the nasty side effects of the SSRIs. It CAN cause drowsiness, weight gain, and sometimes constipation. The reason I mention it is because most primary care doctors do not write a script for it because the SSRIs are pushed so much.
 

mnmama4

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Mike,

So do you think I should just let her make her own choices even though her choices, from what I can see, are going to shorten her life? She is 69 years old by the way. Or do I try and politely still try and encourage her?
I was very angry at her before I went to see her but while I was there I came to realize if I continue to be angry that when she dies I will have wasted all this time being mad at her and that is the LAST thing I want to happen.
 

affected

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ALS affects the digestive system - she is very likely experiencing that.

I don't like the term 'giving up' - that gives the impression that if someone stays strong and fights there is a chance they will win.

Your mum is terminal, this is a horrible and difficult thing to accept.

It is her disease that is happening to her body, and she does have the right to make choices you may not like or agree with.

One of the hardest things for me was to allow my husband who was very young, to make his own choices. It gave him some dignity and some control when all else was taken from him. I have no way to know if choices I would have made would have really made any true difference, except that I know it would have taken his own control away.

It may really help if you find a counsellor. I found monthly sessions with a counsellor really helped me to come to terms with how I was coping in myself as every month of progression went along.

Don't underestimate the pressure and stress it is to watch this monster eat away a person you dearly love. Take all the help in dealing with that you can.

Your last statement is so true:
I came to realize if I continue to be angry that when she dies I will have wasted all this time being mad at her and that is the LAST thing I want to happen
That is why I let go and let my husband make decisions I did not agree with. What benefit would there have even been had he lived a few weeks or months longer if he had been angry at me for taking control from him? And what benefit if I held on to anger because he was making choices I didn't agree with?

I have never regretted empowering him.
 

Lkaibel

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I have to add that realistically, ALS is a pretty unique condition. The vast majority of diseases today have real treatments. This one only has symptom control. I might also add that you are not in a position to "let her" or not "let her" make her own choices, she gets to do that regardless. You do get to choose your attitude towards those choices, and I agree with Tillie you are 100% on the right track in your thoughts about anger. It's a big waste of time you have left with your mom.

This beast defintely effects the whole family, everyone connected to a PALS I think is profoundly changed by this experience. AS Tillie suggests, reach out for any support you need as well.
 

lgelb

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Agree w/ Lenore and others, NM -- focus on what makes you happy together, even if it's just watching an old movie or the sunset, and let her know she is loved. What will not make you happy is arguing over her self-care and attitudes. Just periodically drop a PSA that if/when she wants to do things to improve her quality/quantity of life, you are happy to help.

Best,
Laurie
 

Atsugi

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Mike, So do you think I should just let her make her own choices even though her choices, from what I can see, are going to shorten her life? She is 69 years old by the way. Or do I try and politely still try and encourage her? I was very angry at her before I went to see her but while I was there I came to realize if I continue to be angry that when she dies I will have wasted all this time being mad at her and that is the LAST thing I want to happen.

Mama, I am so sorry for not seeing your message sooner.

Such a horrible disease. It challenges us all in so many ways. Takes a lot of courage.

What you do concerning your mother is your choice, of course. But that's my point. She's of sound mind. She's not drunk or on drugs. She's an adult with plenty of life experiences.

ALS removes so many choices. Fortunately, you have a choice: Do you want to support your mother's final wishes or do you want to persuade her to follow your own wishes?

When it's my turn to go, I want to do it on my own terms. How about you?
 
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