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jwife

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160
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05/2009
Country
US
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Alabama
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Lincoln
Just read in my local paper that the state of Alabama spent $93 million on prisoner health care last year. I just briefly researched nursing home care to find that I would have to sell most of our assets and his life insurance to qualify him for Medicaid. Something seems wrong with this picture. We worked hard all of our lives to accumulate a little, but people who are convicted felons receive free health care. Do you think I could get him arrested so the state would pay for his health care?
Of course, I am kidding. Just letting off a little steam, but it does make you angry that prisoners get more consideration than hard working law abiding citizens.
 

LornaDoone

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Apr 16, 2010
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211
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Loved one DX
Diagnosis
09/2007
Country
CA
State
BC
City
Lower Mainland
I've heard of people in the states getting divorced to get more medical care......
 

hopingforcure

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Any
I hate the way it work's, so unfair, those who have worked and saved a little money are expected to give it all up. Those who do not, are given it free. Another moral, financial injustice, and this one is getting bigger and uglier by the minute.. I feel your pain.
 

10steps

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Jan 1, 2011
Messages
137
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
MA
City
western
Basically that's right about getting divorced. Our insurance will cover a personal care attendent for an approved amount of time but that person cannot be a spouse. So, I hire attendants but if someone gets sick or can't come in then I stay home from my job..and don't get paid(I've used all my vacation/sick time). It adds a great deal of stress to the family. Anyway, if we divorced, then I would get paid.
 

jwife

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160
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
My understanding of the way the system works is that I would still be considered as a financial partner and our assets would be joint for 5 years. I noticed some of the paperwork required bank statements for the last 5 years. The government likes to keep all the loopholes closed. The attorney advises putting everything in my name, but it still would be five years before he could be eligible for Medicaid. Sadly, I don't think he will make another 5 years. He has been diagnosed for 2 and has significant losses in the last 3 months. We saw the neuro today and she wants him to start nutritional intake using only the peg. The hardest part of the journey is still ahead of us, but we will do it one day at a time.
Thanks for the support from you guys. Knowing you are not alone is a big help!
 

kevinbrown10

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Apr 21, 2011
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Loved one DX
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ind
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Rajasthan
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Jairam Nagar
Hi jwife, I think you are quite right but you have to understand that they are two different things. In first case the state government is providing you the free health care to prisoners just because of thinking the fact that they are also human and they can also be in need of health care services. I am also agreeing that health care services are not so easy to get in fact they are quite expensive. It will be never easy for a man to get full health care services.
 

Chase_Corin

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Joined
Nov 24, 2010
Messages
134
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Loved one DX
Diagnosis
11/2010
Country
CA
State
On
City
Perth, Ontario
there is absolutely somthing wrong in my opinion with prisoners getting subsidised health care and somone with a terminal disease having to basically go to the poor house in order to get any help.

If I were you I would complain to your member of government in person or by letter. I would also approach not for profitt agencies to see if they can offer you any services that would keep your financial toll lower. I can't speek for the US system but the Canadian system seems to have quite a bit of assistance available.

Do you have a social worker? or can you meet with somone that might know the health care system better than you do?

I have gotten help for my father though the march of dimes, red cross, the ALS society, and some lesser known agencies. Maybe somone on here would have some other suggestions for you.
 

Miss

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Apr 11, 2010
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In the Land of Cotton
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Way Down South
10step - how did you get attendant coverage through your private insurance? We have Blue Cross/Blue Shield. I cannot figure out how to make him qualify.
 

10steps

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137
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
MA
City
western
It's a long story how everything worked out...we live in MA so insurance is required, however the rates here are extremely high and my husband was self employed so we could get State health insurance. As he became more disabled and income went down, as long as he is still working, he qualifies for a very good program.
 

Alexis

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Apr 21, 2011
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CALS
Country
US
State
Ohio
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Dayton
If it makes anyone feel better, my mom does have medicaid and the only thing it has gotten us is a lot of misery. They threw my mom in a state nursing home with terrible care and now I can't get them to let her come home! She's on a ventilator so we've all done respiratory training and basic care training, and still they think it won't be safe for her. Don't they see that with ALS it's a lot less about "long term health" and just what makes her comfortable right now. They are wasting her life away keeping her there. They act as if because she can not communicate well with them that she is incapable of making decisions for herself. It's very discouraging.
 

jwife

Distinguished member
Joined
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Messages
160
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
Alexis, I am so sorry that you are having such problems with the nursing home. I know that there are nightmare stories about nursing home care. I am not sure that I could put my husband in a nursing home if we could qualify him for Medicaid, but it would be nice to know that the option might be there if I can't take care of him for some reason. My husband has said that he does not want a ventilator, but I'm not sure that will still be his opinion when the aspiration and choking become worse. It has to be scary not to be able to catch your breath.
Is there no one at the nursing home that will listen to your concerns? Have you tried to contact your state agency that oversees nursing homes? I would also talk to her doctor and see if you can make any headway with the doctor.
Again, so sorry that this has turned into a bad experience for you. Keep your chin up. You are doing what you can for your mom. Advocating is not an easy job. There is such a fine line between smoozing and threatening to sue. My grandmother always said that you catch more flies with honey than vinegar. I'd try the honey and if it didn't work, try the vinegar.
Good Luck to you and your Mom.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
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Fl
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Orlando
Unless your mother has been medically deemed 'incompetent" they can NOT keep her in a nursing home against her will. Find a legal aide attorney. It's a well-known fact that ALS doesn't usually cause any mental issues, so it shouldn't be all that terribly difficult to prove she is of a sound mind.

Is she able to communicate at all? With eyes? Fingers on words/letters? Anything?

I'm going to be very sure that my daughter has a medical proxy for me should I ever get to that point. I don't want to be at the mercy of anyone else!

Contact the ALSA organization in your state for help.
 

Miss

Very helpful member
Joined
Apr 11, 2010
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1,757
Reason
Lost a loved one
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04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Bad news. The AMA has FINALLY come out with a statement clarifying that ALS often DOES cause some cognitive impairment (as much as 50% of the cases). Realistically, how can you be diagnosed with a terminal illness that is going to rob your body of all movement and NOT be affected mentally!

A Summary of the Research


•A study published in Neurology, in October 2002, by C. Lomen-Hoerth, Thomas Anderson and Bruce Miller, looked at 36 patients with sporadic FTLD and no known motor neuron disease, found that 14% had definite ALS, and 36% had possible ALS.
•A study published in Neurology, in April 2003, by C. Lomen-Hoerth, J. Murphy, J.H. Kramer, R.K. Olney and B. Miller, found that frontal executive deficits are present in half of ALS patients, and of those, many met strict research criteria for FTLD. More specifically, of 44 ALS subjects, 52% met recently developed research criteria for possible or probable FTLD.
• A study published in Neurology, in December 2003, by Yang W. Sopper MM, Leystra-Lantz C, and Strong MJ. Found that the presence of cognitive impairment in ALS patients was associated with microtubule-associated tau protein positive neuronal and glial. This suggests that the basis for the cognitive impairment is a disturbance in tau protein metabolism.

• A study published in Neurology, in December 2003, by Yang W. Sopper MM, Leystra-Lantz C, and Strong MJ. Found that the presence of cognitive impairment in ALS patients was associated with microtubule-associated tau protein positive neuronal and glial. This suggests that the basis for the cognitive impairment is a disturbance in tau protein metabolism.

• At the 2004 American Academy of Neurology meetings, Strong and colleagues presented evidence that an alteration in tau protein phosphorylation is associated with the presence of tau aggregates in ALS, further confirming the suggestion that the basis of this process in ALS is a disturbance in tau protein metabolism.

• A study by EK Zimmerman, PJ Eslinger, Z. Simmons and AM Barrett (presented at the 2004 annual meeting of the International Neuropsychological Society) found that over 90% of patients with bulbar ALS had deficits in their ability to properly recognize the emotions of others (emotional perceptual deficits).

• In a study presented at the 2004 American Academy of Neurology meeting by C. Flaherty-Craig and Z. Simmons, social judgment was found to be poorer in individuals with ALS than in normal controls.

• A prospective longitudinal study (now underway) by M. Strong, G. Grace, T. Lee and J. Orange of newly-diagnosed ALS patients is assessing cognition, speech and language measures, indices of clinical progression and measures of cerebral perfusion from contrast-enhanced CT scans. The study is designed to provide a detailed longitudinal analysis of the natural history of cognitive impairment in people with ALS and whether such cognitive impairment will progress to a more definitive frontotemporal dementia.
 

jwife

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Joined
Jul 10, 2010
Messages
160
Diagnosis
05/2009
Country
US
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Alabama
City
Lincoln
I sometimes wonder if I didn't see symptoms of the dementia before the physical symptoms became so obvious. My husband had changed in little ways. He didn't seem as emotionally connected as he had previously. Somethings confused him. He questioned words, their usage, spelling, etc. He lost some of his ability to manipulate numbers. I just chalked them up to stress at work or aging. Now his emotions are mostly flat. (which is probably a blessing - I know that I would be a basket case if I were the one with ALS) He was such a smart man and it breaks my heart to see him lose his physical and mental abilities.
Janis
 

Katie C

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Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
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07/2009
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US
State
CA
City
San Jose
Janis... you probably did. We can trace the FTD symptoms back almost 5 years (at least) before diagnosis, which would be 3 years minimum before physical symptoms started showing. Even his mom noticed the personality changes.

Glen's FTD was actually diagnosed by Dr Loemen-Hoerth (cited in two of Missy's listed studies). Living with someone who has "emotional flattening" is not something I would wish on ANYone.
 
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