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my3sunz42

Active member
Joined
Sep 9, 2010
Messages
48
Reason
Loved one DX
Diagnosis
12/2010
Country
US
State
wi
City
waukesha
Hi - I'm not new to the forum, but tend to only read, learn & empathize with everyone here. My sons' father and dearest friend (I hate to call him my ex husband) was diagnosed after a long process in December 2010. The disease is now really beginning to progress - started in his hands, moved to his arms, now his kneck, and speech. We have been divorced for over 10 years - yet have remained extremely close. Both of us have re-married, had additional childen (he had 2 more - ages, 8 & 5 / I have a 9 yr old son). I have so many questions for him that to this point I haven't addressed ... how bad is the disease? what are the doctors telling him now? how can I support him - yes, I'm willing to cut back on my job to help care for him? what are his wishes as far as end of life? what has he told our sons?

I just don't know how to approach it ... do I go to him? do I ask that he, his wife, my husband & I get together? I'm at a loss ... it's breaking my heart. Any advice you can offer is greatly appreciated? Anyone else out there an ex-spouse caregiver?

Thanks for listening!
 
I'd probably either have a set down with the four adults, or see if there was a way that I could talk to him. Either way, I'd do it the sooner the better. My husband was diagnosed April 2010 and by July 2010 he could barely hold a pen to sign his name. We had to get the legal papers out of the way asap. Ask him all those questions. You and his current wife will need to know what his wishes are, what to expect. You need to discuss with him what and how much you will tell your children and how. Ask him if he wants to do things for his children for in the future (videos, pictures, writing letters, etc). Do it now. Right now is the best he will ever be. He won't get any better, or have a "better day". Time is of the essence. Ask if he has filed for disability. If he has, his children and current wife are able to receive some money as well. There is alot to get done and to get your head around in those first few days, but you need to get on the move. I am not sure how fast your children's father will progress within the disease. Each progression is different. My husband's onset was December 2009 and was diagnosed in April 2010, and was put into hospice in July 2011. In May2011 his doctor thought he might have another 4-6 months. This is a hard disease, and I won't lie, it is truelly heartbreaking to watch someone go through this journey. But he, his current wife, and his children will need all the support they can get. It takes a toll on you financially, physically, psychologically, and emotionally. It will change your outlook on life. But while he can, help him to live in the moment. He and y'all will be glad you did. We were told to make the most of the first 6 months, and we went to the beach with our son, took him to the zoo, took him to see Thomas the Train, and we all are soo glad we did that and made those memories. Hold on and don't let go. This journey is a rough one. *hugs* <3
 
Hi my name is Shane. I have ALS and was diagnosed in May of 2007. I have four beautiful children and a loving caring wife. I have two caregivers come everyday. One to help with the mornings and then someone comes for the afternoons. We also have a family therapist that comes to the house to help with the fun news and helping the kids cope. Some of the best advice that I got was that I minimize as much as possible what my spouse does for me. So it would be my suggestion that when the time comes, you take a shift or maybe two a week and maybe help manage caregivers. Make sure someone is always aware of his breathing as eventually it will become more and more important. I would recommend that you start on a breathing machine sooner than later. You are welcome to send me private messages with any questions you may have. I would like to help. All the best.
 
I think we can all agree that as he progresses this will take the toll on his primary caregiver which is probably his current wife. If you have a good relationship, she will really need you! talk to them now and make real suggestions of what you can do to help before she is overwhelmed because it is not going to get any easier for them. And, you will be setting a great example for your children that divorce isn't the end of a family and their dad is important.
Maybe now give her a night off every week so she can go out with friends--you'll have time with your ex and she can relax and know that he is well cared for, and that will let you see other ways you could help them later as he progresses. Good luck to you !
 
Do you have a good relationship with his current wife? If so, perhaps contact her out of respect and tell her you are doing so out of respect for their marriage and family. Offer specific help that you would be able to provide, whether it be running errands, cleaning the house, taking the kids out, cutting the grass, etc. Ask her to discuss with her husband and get back with you about whether they would be willing to take you up on the offer. Then, at that time, you and your husband could sit down with both of them and plan a strategy for care. They may decline at this point, if his symptoms are not too hard to deal with. If they do, let them know you will be there to help down the road. Then, if I were you, I'd follow up to see how things are going with them, and offer specific help again, because it is very hard to ask. Eventually she will need all the help she can get.

By the way, is your husband willing to help out with stuff like yard work or just stuff that may need to be done that she can't do? That would be a real plus!
 
Very sorry to hear about this disease impacting your life the way it has. It sounds like you and your previous husband have a solid relationship. I think that you should reach out to him and his wife and be honest. They will be looking for friends, you would be suprised by how many people that you thought were friends abandon you. You will be suprised at how open and appreciative they will be knowing that your support will be there.

Best of luck, you will be in my prayers.
 
Hello and welcome! Im not so far from you. A little over an hour actually...
I agree with what the others have said. This does need to be done sooner than later. I would also suggest talking with his current wife first, to see where she stands on it. But if the two of you have remained close, I dont see why there would be an issue.
Offer as much help as you can give, and then follow through with it. lots of folks decline help even though they really need it.
best wishes.
 
Sorry. Can't agree. Help the wife. However, conversely, comma:
You want to help the man because you still love him.
Don't be a direct caregiver. That's too close.

OK. Hate me now. Sorry.
 
Wow - I'm overwhelmed with gratitude for all the advice everyone offered :p You are all amazing!

Just a little more about our <combined> family ... we have been very close over the years. My husband & I have already begun to reach out ... taking care of their kids, driving them to/from extracuricular activities, helping out with some of the heavy lifting around the house, etc. Now I think it's time to understand their perspective as he progresses, propose additional help - including taking shifts as caregivers, and to talk about the ugly stuff noone likes to talk about (legal stuff - our shared boys are still under the age of 18, his wishes for their future, our relationship with their young ones, etc).

I spoke to my husband last night & shared your thoughts ... we have decided to pull together our list of questions / topics (this is going to be an emotional meeting - we want to be prepared) and then I'll ask my boys' father how he'd like to meet - the 2 of us or the 4 of us - whatever is easier for him and his wife.

Again, I greatly appreciate your advice & more importantly your time. Thank you from the bottom of my heart.

As for the question of love ... you're right ... I do love him ... after all he is the father of 2 of the greatest gifts I've received in my life :)

Hugs to all of you!
 
I agree, Mike. My ex and his other ex and I all remained friends and helped each other out when we could. He was the father of my child. When he was ill, even though we had already divorced, I went and took care of him.

I wasn't "in love" with him--but that didn't mean I didn't still care about him.

It's going to be up to his wife how much she is comfortable with , though. She must be involved in this meeting--or she's going to feel as if you're taking over--which, as his ex, you just can't and shouldn't do.

I wish you all well.
 
I couldn't agree more. While my mother-in-law is no "wife", in many respects she has disrected me, my husband and our wishes. She has taken over in several aspects, and it leads to distrust, and I become angry with her very easy. She has never approached me and asked what she could do to help, or asked if she could do dishes or errands, or helped financially. Yet, she feels like she can demand what she wants and get away with it. So, be very careful that the current wife doesn't feel like you are taking over, keep her involved, and ask her how you can help her, etc. Its a very emotional time and everyone deals with this differently.
 
wow if this comes off without a snag you guys need to be on Doctor Phil McGraw's show. I wish my parents had gotten alone only 2% of what your saying I think thats great. I would go on que of his wife, his main caregiver. Organizing and planning caregivers would be a hugeeeeeeeee asset. He may not be willing to talk about the end yet, Your children will get ssi payments and all that, may even quaalify for it now if he is declared disabled. I'm proud you stepped up, just don't be surprised if he isn't ready to talk or ever will be ready about talking final wishes.
 
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