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Hi Tracy, your profile says your husband with dementia is now in a nursing home. Can you be more specific with what help you need?
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Tracy1967 May 2019
It’s mainly financial. I can’t get any answers
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I read ur profile. How are you over your head. Husband is in a NH. All his needs should be met. If no money, then he has Medicaid with you being the Community Spouse, meaning you should have enough to live on.

I know stress makes MS flare up. My cousin had it. So, why ru over ur head?
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Tracy1967 May 2019
It’s mainly financial. I can’t get a straight answer about how much I will be getting to live on. He’s been there a year and I’m extremely frustrated bc I can’t get answers
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Tracy, I am somewhat familiar with Sabetha, KS. and I know that sometimes the resources you need are not available in a small town.  And it isn't easy to have worked as a nurse and then have to stop working because of your health.  In what ways are you "over your head"?   Financially?  Health care needs?  Legally? Is your husband in a facility in Sabetha or in another town? Do you have to travel far to another town to see the doctor who is treating your MS?  Do you have DPOA for Finances and for Health of your husband?  Does your husband not have a Living Will and you are not sure that you are doing the right thing?

We want to help, however, we need more information so that we can give you appropriate suggestions and advice for your situation.
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Tracy1967 May 2019
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Tracy, I am so sorry that your step-children have been so horrible to you. It might be that they are jealous that their Dad married a younger woman and that she is the one taking care of him AND they might be afraid that you will get ALL of their Dad's money and that there will be NO inheritance for them from Dad. 

Could you clarify what you mean by “I can’t get a straight answer about how much I will be getting to live on”?
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Tracy1967 May 2019
I’m not quite sure how to answer the questions or should I say I’m not real good at “navigating” on this...
Medicaid has yet to tell me what if any it’s going to pay on his care at the care home. He has retirement too so I don’t know how it all works and when I ask I get “we’ve got to refigure the equation” SO I’m getting deeper in debt. There is no inheritance bc his kids have twisted him around so much financially that he has NOTHING. I think the dementia has been working on him longer than I actually noticed AND I feel bad for that. He’s a great husband and it’s hard seeing him like he is. The kids I know are jealous and I could tell you true stories of what they have done in the past 7 yrs for weeks nonstop. I just wake up daily thinking “I wonder what’s going to happen today!” I believe in God and know there is a reason for all of this happening the way it is but could I get a glimpse of why? Idk if I should be finding an attorney, try bringing him back home even tho I go get him every other day to spend some time at home and I just can’t do the physical care anymore OR what I should do. He seems fine down there but I know it feels like prison to him...I feel he is in the very best place for him. His kids won’t drive the 2 hrs it would take them to come visit with him or even call him with any regularity. I’m an “only” which sounds crazy bc I’m 51 yrs old but my parents live here in Sabetha and both of my kids have stayed close by bc that’s what we do...we’re a close knit family. My husband knew that there was no moving away when we met. He loves it up here being from a farm community he fit better up here...he was living in Kansas City when we met. He’s made my family and friends his family and friends bc his kids wrote him off when we got married. My kids treat him with respect bc they don’t know any other way. I know this has to hurt his kids knowing he’s up here doing holidays/bdays all together without them but I have tried and I mean I have tried to include them in everything but after being stabbed in the back so many times I just do what I can AND after they tried moving him behind my back I’ve thrown my hands up bc idk what to do. I have a dpoa for healthcare decisions with his middle dtr worded so we have to both agree to whatever medical decision we are doing...now tell me how that’ll ever work?! No living will. No dpoa for anything financial he just added my name to everything. I know now I should have done this differently but not much I can do about it now. No living will either. I’m trying to think of your questions as I’m typing so I’m sorry this is so random. This week I’m preparing for auction #2. He had been a gun dealer for years so I’ve been selling out as I can (I hope when I mention guns that doesn’t scare you away) I’ve got to be careful about saying I’m selling stuff bc of medicaid. I just don’t know what to do....ok I’ll stop and let your eyes readjust.
I really appreciate you getting back to me!!!
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Tracy, thank you for responding so quickly to my request for more information.  Now I have a much, much better idea of what is going on in your life and with your husband.  I am here for YOU and YOUR Husband. 

And no, mentioning guns will NOT scare me away.  My Dad was a Hunter Safety Instructor and I have friends who LOVE to hunt.  I am not fond of shooting a gun, but I do LOVE to fish and our family used to go to Lovewell(?) Dam years ago.

Several of the other people on this forum have a much better idea of how Medicare and Medicaid work than I do and I think that they can be of help to you.  Please stay with the forum no matter what someone says.  It is so hard to truly express ourselves with just words.

You might want to contact an Kansas attorney who is familiar with the Kansas Medicaid laws and requirements since Medicaid is a state-run organization.  Contact the Kansas State Bar for a list of lawyers with Medicaid knowledge.

I think that your husband is in the best place that he can be in.  Since he has dementia, he needs 24/7 care and you can not and will not be able to take care of him as well as they can at the care home.  You might find that bringing him to his home every other day becomes too much for him to handle and you might want to limit the number of times that you take him to your home/house.  Each time that your husband goes home and then goes back to the care home, his brain has to readjust and eventually the dementia is going to interfere with his ability to do that.  Maybe bring items or photos that he likes to the care home and spend time with him there.

When you have questions, please feel free to ask them.  You can always send any of us a Personal Message.  Just go to the person's Profile page by clicking on the Icon next to their screen name.  Check the box "Private Message",  type your message and then hit the "Send" button.

I am glad that you have family in town who support you.  Take care of yourself.
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I contacted an attorney to find out what I needed to do bc Kancare can’t seem to tell me what I need to be paying monthly for my husband. I have been told $4,500 down to $1,000 making it extremely hard to do any kind of budgeting. He told me it doesn’t happen often but sometimes medicaid does this and there’s nothing I can do about it. I just don’t understand when our income has not changed where they are coming up with all the different amounts. The last letter I received was doable so that I can pay down on the $30,000 we owe. I cross my fingers and hold my breath everyday when it’s time to get the mail. It was hard placing my husband in a care home and then the stress of Medicaid. It’s taken them 10 months to give me the liability and then I receive the four letters all dated the same date in the same envelope explaining what Jan would be then Feb was higher than Jan. March was half of Jan. April was a lot less and May was what I had expected from things I have read. You’d think these things could be handled better than they are. I know my husband is getting good care so that’s all that really matters.
Now I’m back to finding activities for him and other male residents to do bc most everything is geared towards the ladies. The activity director has quit that I had given all the ideas I had gotten from a lot of you. It’s really not my job to do. I would think they’d have all kinds of ideas or be able to reach out to other places to see what ideas they have. I guess we’ll see how it goes.
I'd like to thank everyone who has responded.
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