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ThreeGreatKids

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Hi. Thanks for being here. My ex, the father of our three kids, was just diagnosed with ALS. I cannot imagine anything worse for any of them. I'm here to look for advice in navigating a very awkward and strained situation. He is the father of our children, one is 23, and there are 18-yr old twins about to start college this fall. And I want to help. I know caregiving works best with many people pitching in. And his diagnosis comes after some pretty horrible things starting in 2003, which led to an eventual divorce a decade later, but include some pretty untrue and malicious things said about me to his family. I do love the ex parents very much, but there is now a wall, and the siblings have already told me I can't attend the funeral (much less help). I want what is best for the kids, and I don't think their way is it. Also, the money portion of it is awful and difficult to navigate, because I can't even talk about it, at least not yet. So many horrible things, and the main one is that I want to help, and I want my kids to be in a good place emotionally, without the family making a bad situation even more difficult. Is there anyone out there who has advice on this situation? Thank you again.
 

gooseberry

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Could you talk with his parents? Let them know you want to help. I would start there and get a feel for things.

You could say I believe some hurtful things were said when we divorced but xxxx is still my kids father and I Care for him as a friend. I would like to help you.

You can always get a cleaning service for the house, send meals or gift cards, get someone to do lawnwork etc.
 

ThreeGreatKids

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Thank you. I have contacted the clinic where he was diagnosed, and spoke with a specialist who shared this with me (for others who may be reading):
The first step, loss of motor control in the early stages (hands grasping, loss of ability in legs), can make cooking a meal quite hard. They will not have a large window of time to enjoy the foods they love. Cooking some things for them is helpful.
Next, things that are easily grasped, no utensils-- small sandwiches, cheeses, crackers, bars, smoothies, etc.
Then, perhaps things in liquid or near liquid forms. I am searching through ideas and it looks as if a NutriBullet is a good investment.
Cooking was one of the first things I offered to do, along with the cleaning. We will see how it goes.
The first shockwave after the diagnosis is filled with overwhelming pain, grief, guilt, and anger from many involved. I am trying not to allow negative responses determine who I am in my efforts to help. I want above all to show my children that compassion breaks down walls.
I will work with my ex on this, and follow his lead regarding the food and cleaning. It is the financial piece that is ugly and difficult, it needs discussion, and I know we will get there one way or another. I was just hoping to have some guide posts from others who may have been through this awkward and awful situation.
Thanks for your suggestions.
 

Nuts

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Anything that you can do to help your ex will be a blessing to him and to your children. We've found that many people actually disappear, and few step up. He may need you more than his family realizes.

I don't know what the financial piece is that you allude to, but you probably already know that this is a financially devastating disease. There are excessive expenses at every stage of this disease, and ultimately he will need round the clock care.

Has your ex ever been in the military? If so, there is a lot of help there.

It is very early yet--I think that as his family realizes just how much care he needs that they will eventually welcome your assistance. In the meantime, preparing your children and coaching them to be helpful and supportive when they are with him will be a big help.

Beckly
 

tripete

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Tip #1 Do not bring up money. I am also divorced and pay alimony and child support. My ex has asked if I could double alimony payments so that she gets all she has coming. When I had to go on disability and have the child support adjusted she was not happy about it and complained about the money. At the same time she was saying how sad it made her to hear that I had this awful disease. Well all the statements about caring are erased when she complains about the money. Just don't bring it up.

Offer help but realize that given the divorce it probably will not be accepted - its just the way thing go when two people who shared a life together go their own ways. Encourage your kids to love their dad and help him as much as they can. That would be your best avenue.
 

gooseberry

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As a former cals, there were many days I wished someone would clean for me or make a meal. If you and your ex are okay talking, ask him what he needs or wants you to do. It may be sitting and watching a movie, helping him learn how to use a tablet, shop for clothes that accomodate his illness, etc. Really, anything helps and as Nuts said, those you think you can count on often disappear.

Just my thoughts, your ex gets to make his own decisions. Family may not like his choices. If you can be there for him, unselfishly, go for it. As Pete said, I would not bring up money unless it was to help with insurance paperwork, advocating for his needs, etc
 

affected

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Go for a top range vitamix rather than a nutribullet as it will do a lot more and allow the consideration of real food being blended for tube feeding later.

It sounds like he is bulbar onset?
 

gooseberry

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Tillie's suggestion is a good one. As his breathing becomes more impaired, it will be hard to use a straw for smoothies. Pureed food will be better.
 

Atsugi

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Probably no one would object to the kids visiting, the kids delivering meals, the kids providing services. You could subsidize the kids.

I, too, had a great deal of compassion and worry about my ex. I wanted to help her and protect her, even though we were split. But that was really selfish of me. I wanted to maintain some connection.

Has he remarried?

The priority you mentioned is the kids. That has two sides. Emotionally, they may want to help Dad. But also, your kids will need your money for school and life's emergencies.
 

gooseberry

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And the kids may be unwilling or unable emotionally to help.
 

Lkaibel

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Honestly, I would focus on your kids and helping them handle it. If your X has siblings and has parents still living, he has the support he needs. I don't know if he has remarried, but if he has this goes double. While I would not treat my husband's X's badly, nor would he I don'y think they would have a place in this scenario either.

I understand that X's who have had kids together have a durable connection in that way always, so your situation may be different.
 

diagnosed2016

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Sorry to hijack, but oh my goodness, tripete, that is evil that your ex would ask for double payments. I can't imagine the selfishness that kind of request entails.
 

ThreeGreatKids

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Thank you. It is he and his family who are bringing up the money. I want to give it to him but the need is so great for continuing to care for the kids, and for college. I'm 56 and not able to gain full-time work after being out of the workforce 17 years as a mom. (I was in advertising, so there are about 300 million people behind me in line who are in their 20s and will work for peanuts). I will adjust to whatever happens and make it work. It is good to hear words from someone who has been through this. Thank you again. As for the help, I feel that there is an emotional side of him I know, and past unsightly physical things that I have dealt with -- if anyone can power through some of these days ahead with a smidge of past experience, I feel it's me. I hope to reach that agreeable plateau that we had always shared, if he'll let me in. But, good advice again -- if he won't, it's up to the kids. They are heading off to college, however, and I want that to be their focus right now. Ugh. A lot of things to consider. I appreciate your reply; thank you.
 

ThreeGreatKids

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You are reading my heart. Thank you. As for the financial end of it, I know there are some insurance policies, etc., but again -- don't want to bring it up. He is a financial genius, and probably knows some of the ins and outs. I also understand that health insurance is resistant to home care, but there are some ways around that (as opposed to a nursing home). I have been looking into that, so I quietly have some information he may not have seen the fine print on. Thank you for your response.
 

ThreeGreatKids

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This is what I was thinking as well. I would love to be there as a sounding board; just someone to spend time with, who he doesn't have to work at being a "host" in his home... he is a very publicly polite guy, a good trait that my oldest son especially has inherited. But sometimes it is to his detriment. So, yes, thank you. I feel too as if this is solely his decision. Honestly, not all people who ask for a divorce are evil. And some can even be compassionate :)
 
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