Don’t know what I’m going to do.

[Tess77]

My Aunt and Uncle confronted my dad. I don’t like the things they said to him and I don’t agree with the way they treat him at all, but I do think he’s in denial and I have no idea what to do.

My dad doesn’t want to move here and to keep my family together there is no way for me to move to him (I have two small children and I will NOT take them from their father who can’t move). My dad lives alone in a city where he has friends but not the kind of friends that he will ask for any help and my aunt and uncle who just came down on him for calling them once!!! They told him they won’t take care of him, tbh they were real jerks about it; all he’s done so far is called them to come over ONCE when he wasn’t feeling good.

But My dad won’t move out of his second story condo and he won’t take any steps toward preparing for the future. He keeps saying he will think about it then does nothing. I guess they thought they’d try to shock him into doing something? I know things are getting harder and harder for him to do and he doesn’t have anyone to help. things are starting to pileup. I’ve tried to talk to him about getting some help around the house, he says it’s a good idea then does nothing.

My dad said that he hates where I live and he feels like he’d just be moving here to die if he moved here I have no idea what I am going to do. I am really worried that he will wait until something very bad happens before he starts to think about the future.

 

[rmt]

Tess, I'm so sorry that you are having to deal with such a difficult situation (on top of an already incredibly difficult situation!). I can't believe your aunt and uncle were so unkind to your father. That is terrible.

What is your dad's current physical situation? I think last summer it was his hand or arm that was first affected. What functional loss does he have now? And how is his mobility? Where is he getting his medical care? Is it close to his condo?

Are you the only support system he has? Clearly your aunt and uncle are NOT very supportive! He is lucky to have you!

 

[lgelb]

I'm very sorry this is happening, Tess.

Does he have the resources for in-home care to support him, or does he qualify for Medicaid?

Is there elevator access to the condo? I'm guessing not?

When things cool off, maybe you could broach his moving to an accessible condo or apt. in his neighborhood, or somewhere closer to you that he wouldn't mind? How far away are you right now? Is there a friend or professional that he trusts where he is, that could keep the conversation going?

Best,
Laurie

 

[Tess77]

He is in Houston and I am in Chicago. He’s said he won’t move here because it’s too cold. Based on googling I think he will qualify for Medicaid in TX but I am unsure about Illinois. My mom (his ex) is in the Midwest as well and I think we are his only real support. Nobody in TX has done much for him. I think I have finally convinced him to talk to a Medicaid lawyer but he says he’ll do it and then just puts it off. We’ve sent him names of Medicaid lawyers to contact. I think he thinks since he has to spend down his retirement that it’s not worth the effort. He won’t even call his friends to help him put together his shower chair or even one small errand and he tells me nothing about his clinic visits. In the beginning I tried to reach out to the ALS association of TX, I guess I could try that again? I think I need to find a resource in Houston that could help me find him a home health aid but I also think he will resist actually hiring someone. I’m at the point where I think I might just have to hire someone a few hours a week to be my eyes and ears on the ground in Houston. I have no idea if that’s even a thing but I just feel so helpless here.

He is still in ok physical shape. He hasn’t lost any more function other than his hand. But he’s lost muscle, is dropping things (which happened in his right hand) and is very tired. I think mostly his lungs are doing much worse. He says the stairs bother him because he gets winded and tired. They have him on CPAP, I asked about BiPAP and he wasn’t very happy about that suggestion. He wants to ask them to put him on oxygen.

 

[lgelb]

If he qualifies for Medicaid in Texas, he almost certainly would in Illinois. Texas is pretty strict. But it doesn't matter if he doesn't want to move to Chicago.

I will PM you about possible resources in Houston to check in on/support him (though obviously he would need to be willing). Eyes and ears are hireable, but requires consent. He most definitely should not be on CPAP, nor oxygen. What clinic has him on CPAP? BiPAP would be more comfortable for him, as he would breathe out against less pressure, so you might lead with that.

Best,
Laurie