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My mother has psp, her husband has a heart condition. My mother-in-law Sue has had "parkinsons" for 15 years now. Her health has deteriorated greatly this last year. She went to a specialist in Jan 2014 who said she has progressive supra-nuclear palsy. She has about two years in which her sight, mobility, ability to speak and swallow will one be one be taken from her. She will be in a bed unable to see or move with a feeding tube in her stomach until she starves to death or has pneumonia. I am told people with this disease pray for pneumonia. Another specialist told her she has bladder cancer and needs surgery every 6 months to remove the cancerous growths so she can keep her bladder and not need a permanant bag stuck to her back
Understandably her 77 year old husband with a heart condition and paranoia issues has freaked out.
He sold their home, bought an RV and has been traveling the country so they can visit grand kids and she can see the country before she goes blind.
The trouble is
1. vehicle only gets 14 miles to the gallon, they spend $600-$1000 between each child's home. (AK, AZ, CA, OR, FL). They are rapidly losing their savings
2. At each child's home they either have to be admitted to the hospital or have car trouble. 3 times while visiting me she had a two week stay in the hospital and he twice had a one week stay in the VA hospital.
3. Friday he fled our home because he was a angry I suggested she see the specialist for the bladder cancer, because it is time for her surgery. yesterday 5 hours from their daughter and 14 hours from mine on a empty bit of road with no one on it, He had a pneumonia attack. He stopped the RV to get out . my mother in law wanted to get out too. He was helping her down the stairs, because she can't walk by herself, he blacked out and they both fell to the ground in an empty field.
I have been praying for them. and at that precise moment, on a dinky road with no cars a paramedics van was passing by, saw them fall and went to help them. They took them to a hospital where he refused to be admitted because no one could take care of sue, At least the paramedics got them up off the ground and into an actual town. The road between redding CA and medford OR has been closed because of a fire so their daughter can't reach them. They are in a Walmart parking lot waiting for a miracle. He does not want us to help them.

We have taken care of Sue many times through the years, I was her sole caregiver one month of the summer while he was visiting his own children because sue hates them and swears at them when she hears their names. When I ripped my transverse muscle trying to get her in the shower, My husband was the sole caregiver for the next three weeks during his vacation period.
John's (her husband) paranoia issues are getting worse. He believes that our side of the family are trying to get her money. What money? All the money will be gone in about 6 months and she still has a year and a half of needing intense around the clock care. She will need a LOT more care every month that passes.

My questions are
1. I don't know if I need to go the legal route in order to keep her safe from his paranoia. Every time he gets mad at someone he puts her in the RV and they drive to the next house.
Considering the horrific death that is facing her, does he in someway think that dying in a fiery car crash would be a better death? What if he dies and she doesn't, and she is lying in an empty field waiting for help? Maybe going the legal route would just make it worse. I don't know
2. None of us have the money, strength or time to be %100 caregivers, 24 hours a day. We all live faraway from each other.
We do have a room for them and my sons can help between 6 and 9 p.m. When her husband is around he takes the night shift. When he drops her at our house to visit someone else, What scott my husband and I have done is take turns with the night shift because she is awake half the night crying, needing medicine, wanting to walk around, even though she can't really walk she just stands there being frustrated and swearing at me.
Now i have ripped my transverse muscle so badly I can barely stand/walk/take care of myself let alone even help her out of a chair. There is no money to put her in a nursing home. 50% of the time she is completely lucid, erudite and has many intelligent things to say. 50%of the time she is a crying 6 year old who is scared of everything. When she is lucid she has asked us not to put her in a nursing home because she does know who she is and she couldn't stand to be with people who drool.

Question-if she stays at our home, we provide the roof, bed and meals, and she has no money can medicaid send in home health nurses to provide her intense medical needs she is going to have?
When John sees that she is in a catatonic state he always brings her to our home, so she can go to the hospital near us. so we know when things get worse he will bring her here. At least we hope that will continue

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Cheerful,
Just want to wish you well.....goodness you have your hands full
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cheerful, I do have to admire your Mom's husband for wanting to give her every inch of life he can squeeze out of their lives to try to make her enjoy herself.... the fact he wasn't afraid of taking her to a play in her condition... of course, he probably sees her, in his mind, as a much younger healthier person because he is with her day to day.
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The very next step is to disable that RV. Park it in. Block it off. Please do it today. Don't let him drive another inch.
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Thankyou for your wonderful advice. Good news, the fire ended and they let them through to medford. They have parked their RV outside of Sue's daughters home. She works but at least there is a responsible adult in the town. Sue's husband has one daughter who lives off welfare and disability because she has a mental illness.
My husband has decided to move our family to our larger home that is only a few blocks away from sue's medical appts. I had been really excited about the move because We will live in an actual town and not the desert anymore. However the idea that John's paranoia will probably get worse and he can't see how sick Sue really is is unsettling. Scott this last summer when he was sole caregiver for three weeks, was able to finally see the depth of the deterioration. she can't feed herself, go to the bathroom by herself or walk without holding onto an arm Even then she shuffles a few inches at a time. She is too weak now for a walker. She can't enjoy things like she used to. Her husband took her to a play and she hid her head in his arm and cried through half of it.
I think, mentally, moving us to a town is Scotts first step to seeing he will need to do something about his mom. We will see what the next step is in a few months.
-cheerful-
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I think getting them off the road is the main thing right now, since they're danger to others. If it were me, I'd let law enforcement know exactly where they are, and also notify them that they need urgent medical care, are volatile, and not of sound mind. And, I would tell whatever hospital they end up in that no family members are able to care for them. I think that would be a good start to resolving this as much as possible.
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Now Sue is your mother in law not your mother correct? John is her husband and Scott your husband is Sue's son and your mother in law. John has other children from a previous union and Sue hates them?
If John has other children have they been contacted to understand the true state of John's mental and physical health? Could or would they intervene?
Do you know the current location of the Walmart parking lot. you can narrow it down if you look on a map that shows walmart stores. Contact adult protective services in that town and alert them to the situation and ask them to provide immediate and emergency help. they are certainly a danger to themselves at this point.
As far as obtaining POA for them both,he will never agree and although she might he may have enough control to be able to prevent her signing and they may both be deemed incompetent to sign. Taking the neucular route for guardianship i am told is very expensive. Do you have the money and do you wish to spend it for this purpose.
Your husband is still working and you have a disabling injury which I hope you are having treated. Sue at least will need 24 hour care for which there is minimal public funding and they don't have the money to employ aides at $10 - 20 an hour even assuming you are able to find reliable ones.
I hope you did not promise sue that you would not put her in a Nursing Home because all I can see is that promise being broken. She will likely go in under Medicaid and unless she is closer to other family members it should be close to you so you can keep an eye on her care and maybe take her out if she is stable. As long as John is deemed competent I believe he has the final say over her care if she is not competent which sounds to be true 50% of the time.
This is a very difficult situation to be in but I would strongly advise you not to become their caregivers. He is going to probably become nasty and possibly violent. Her dementia will continue to repidly increase as will all her other symptoms. She is likely to become totally incontinenet, unable to walk and you already know about the feeding tube etc which she may be likely to pull out. She may not even be fit enough for the anesthetic to have the cancer surgery now or in six months.
I do agree with Country Mouse that they may both be past caring about what happens to them which if fine but you can't in good consciousness allow them the opportunity to harm others on the road. By all means keep praying and hope the guardian angels remain alert but God only shows us the way he does not do everything for us. Well he has shown you that something needs to be done so it is up to Scott with your support to take action. so go to it. Blessings
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"He does not want us to help them."

I have to say, that's the line that jumps out at me. Cheerful, aren't you going to have to wait until that changes? And in the meantime, perhaps your husband had better have a good hard think about what help, exactly, he is prepared to offer them. NB - ***he*** is prepared to offer them. Not you, with your back. What are his views at this point?

Just in case you need reminding of this: it is fair and reasonable for any married couple with a family of their own NOT to entertain the idea of providing intensive nursing care in their own home for a seriously ill, dying woman whose husband is a loose cannon at the best of times and right now is completely freaking out. Whatever happens, whatever you're both, you and Scott, considering, do not underestimate the level of care and expertise your MIL is going to need to achieve a bearable passing. If I were you I'd be researching her publicly funded options as of now.

Keep praying. It seems their guardian angels have been listening so far.

E/lass, I think you're making practical and helpful suggestions, which in due course might be the way the family has to go. But just this thought: mail? Stable environment? Medical attention? It would make a kind of sense to me if Sue and her husband were past caring about worldly goods and conventional health care. Their perspective has changed.
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Crashing into town to visit adult children and needing emergency medical attention because they're not seeing Dr.'s on their travels puts the adult children in the position of having a very big say-so in what this pair does.

If and when you get to the point of needing Medicaid, Medicaid won't provide the amount of care you're going to need for your mom at that point. You might get 2 hours a day from Medicaid.

Get them off the road and situated somewhere. They're a danger to themselves and to others. An elderly person needs a home whether it be a nursing home or an adult child's home or their own home. They need a stable environment. They're also the perfect target way out there in the middle of nowhere driving that huge RV that screams, "OLD PERSON". And they obviously can't fend for themselves at this point either.

I think you're past the point of getting POA over them. Giving someone POA is considered part of "getting affairs in order" which should have been done before they started out on this misadventure. If your stepfather has a mind to, he can just jump back into that RV and drive him and your mom away if he wants. I think guardianship over both of them is your best option right now. It's a nice dream for people to have: retiring, buying a nice RV, and just traveling around visiting family. But a person shouldn't give up their home in order to do this. How do they even get mail???
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For the safety of others, he does not need to be driving. Contact the authorities, sell the mobile home and any other vehicle they own. Has any of the family been to doctors' appointments with either parent? ALF is the best answer. They both need professional care. They have been fortunate to stay this independent.
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As they get older and their health declines, eventually they will pull that RV over to the curb and reach out for more long term help. But that is the type of life they prefer at this point in time, that is what THEY wanted to do when they retired, I realize it not the type of life you wish they would have.
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Her big problem right now is getting them out of Walmart. I think the troopers may have to convince them to abandon ship.
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I like Pam's better.
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Medicaid isn't going to provide home care as extensive as your mom will need in the future. They'll provide some, certainly; but, when push comes to shove, she'll have to go to a nursing home. Period.

To be sure you've got the straight scoop, you should call Medicaid and tell them you're fact-finding for the future. See what they have to say about how much help they'll provide at home.

What a mess. You've got two options, as I see it. Let it play out on its own...or go nuclear: get Senior Services or Adult Protective Services involved the next time she's at your home, have them come to evaluate her situation (surprise visit to her and hubby), and see what they have to say.
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Get them off the road, pronto. Alert the authorities near that Walmart of the dangerous position they have put themselves in. Get an emergency temporary Guardianship for both of them. They both have dementia, come to grips with that. You use their SS checks to cover their expenses and care. They need Assisted Living at the very least, they can be together at an ALF.
I would also get in contact with the manager at that Walmart, because Walmart won't let them stay there, they only allow overnight parking.
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