When Death Comes Knocking
We were living the good life, and we were well aware of our privileged status. My wife, Sweetie, and I were both well paid professionals. The kids were both in college and we had the house to ourselves. We had been married for 31 years and were approaching realizing our aspirations to retire and do the things we had talked about a thousand times.
Last spring, she was having some trouble walking. She had an MRI and the diagnosis was a torn meniscus. The meniscus was repaired, but the walking difficulty continued. A physical therapist identified motor coordination problems endemic to her left side.
She went to see a neurologist. There were brain scans, MRIs, sonograms, x-rays and blood tests. No evidence of a stroke. No MS. No Parkinson’s. No spinal problems. She was referred to the motor neurology department of a university hospital system.
By July Sweetie needed a cane to assist walking. The diagnostic process protracted through summer and fall. The doctors were non-committal and evasive. The challenges were affecting the entire family. I had soured on corporate life and was focused on home. I fizzled out and was laid off.
The first weekend of November, Sweetie fell and broke her femur. The injury required surgical repair and she spent three weeks in the physical rehabilitation ward. Since the fall, she has been confined to a wheel chair and needs a walker to move into bed or use the toilet. She is in pain and unable to get comfortable. Her physical condition continues to deteriorate.
Upon physical rehabilitation discharge, neurological diagnosis resumed with an EMG and lumbar puncture. Thursday was the neurologist follow up. The level two neurologist did not make a definitive diagnosis. The symptoms and tests cover about half the spectrum of ALS and the neurologist made the referral to the ALS specialists.
The neurologist was no older than 35 and reticent to deliver bad news. During the discussion I had made eye contact with her and made statements about a permanent ramp, not returning to work and disability. She maintained eye contact and affirmed those statements. It was pretty clear that her expectation was that my wife would not recover.
I am scared witless and anxious. Will I be able to take care of her? How long do we have? What will the quality of life be?
What do I need to do now?
============================================
My wife is nearing the end of FMLA and has enough sick time to get to mid-May. She works for the schools, co-workers can donate sick days and if she has enough sick days to get to the first week of June, then she has health insurance until September.
There is little doubt that she will qualify for disability. Her workplace short term disability is 365 days @ 50% and includes health coverage for her. That will give her healthcare until mid-2016. Is disability income treated the same as regular income?
After getting laid off, I used my health insurance COBRA through the end of 2014 and then joined my wife’s work healthcare insurance. The tentative plan is to maximize her time served via sick days to maintain the work place insurance. Then I have to decide how to insure the remainder of the family. I lean toward COBRA for the remainder of 2015. The thing that makes COBRA attractive is the family out of pocket maximum will be achieved making everything else covered during the COBRA period. One of the kids is racking up medical costs too.
Any insights on COBRA versus ACA are appreciated. How does the progression to SSI and Medicaid work? Have any of you gone through the disability progression? What kind of documentation and bureaucratic steps need to be taken? Is there a way to expedite the process?
I have a healthy 401K, but I am only 57 years old. I want to avoid the 10% penalty for withdrawal before 59.5 years old. Secondarily, I want to shield my retirement from medical expenses as optimally as possible. I have opened a home equity line of credit that should get us through this year. The home equity line avoids the 10% penalty and the interest is tax deductible. The downside is that it is debt. I can do hardship, no penalty, withdrawals for medical expenses. The objective is to minimize income during 2015 and position for SSI and ACA. Any input on this strategy would be appreciated.
I have temporary ramp that is costing ~$400/month and have a contractor coming by to quote building a permanent ramp. Is the ramp a qualifying medical expense? What about bathroom modifications? The question is twofold, taxes and 401K hardship withdrawal. Are there steps to making handicapped accommodations qualified expenses?
I think we need to execute a living will and healthcare power of attorney, but I am intrepid about broaching the topic. Any advice on what to do and how to engage my wife is appreciated.
I can do the research and pretty much know the answers to most of the questions. I am looking for sage advice, the voice of experience and ideas.
Thank you.
Comments
...
oh my god, I am so sorry, Tim. How awful. And Im sorry I have no sage words of advice for you other that to suggest you try to find some kind of Support Group with others who are dealing with similar issues and experiences who might have advice. Cant the medical people recommend something like that? I have no idea.
Ill be brief here but holy hell it pisses me off that you have to deal with all the financial defense catastrophic crap while in the midst of all this. Damn them.
Sending love and light, thats about all I got for ya.
Tim...
listen man, I had no idea, I know you're not looking for sympathy but I have nothing more to offer except to tell you how very sorry I am. Damn, I've got problems too but they are nothing compared to what you face, my friend. I have no answers to any of the questions you ask and if I lived closer I would build your ramp and remodel your bathroom, that would be all I'd have to offer. My wife is 5 years older than I and comes from a family with rampant health issues and I fear that I may be one day facing the same decisions you're now facing.
Tim, I am truly sorry and if there is anything i can do let me know, you've got my email, if you need a friend to lean on, I'm there. You and Sweety are in my thoughts. Man, life is unfair.
Thanks Johnny
I can't stand to see her suffering and feel like my fate is to be broke and alone. I can't leave her alone for more than about an hour. Even then I fear coming back and finding her on the floor.
We've been eating real good. I do all the shopping and cooking.
Next week is pulmonary tests. They want to base line her breathing. The ALS can block the breathing impulse.
I have no idea how this is going to play out, neither do the doctors.
I'll be damned if I will have the medical and insurance industry siphon off thirty years of savings. I'll waste the money first.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
About caretaking...
My mom is involved in doing this for her partner at the moment.
Let me say from the bottom of my heart that it's incredibly important that you take at least a small amount of time for yourself.
If you don't, you'll burn out, and that won't help your loved one. Sometimes the burnout can even result in physical illness in the caretaker.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
I hear you
I try to hit the gym 2-3 times a week. Believe it or not, I enjoy walking the aisles of the grocery store. I also enjoy preparing meals.
I am worried about the physical demands as her mobility diminishes.
So far the toughest part is, when she has to pee during the night. I have to get up.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
That is tough.
Things you never think about till you have to...
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Tim,
I am really, really sorry to hear about Sweetie's serious health condition, and hope that with all the medical advances, some good news will come your way, soon.
I can't say that I have 'sage' advice, but I honestly think that you should seriously consider seeing a financial planner and tax attorney (if you already haven't) that you know to be very reputable.
Hopefully, folks here can offer some suggestions based on their own experiences about some of the issues that you've mentioned.
Mr M and I have worked with CFAs/tax attorneys, and know firsthand that they must have very extensive detail (to run spreadsheets and programs), before even they can give financial/planning advice.
So, if it were me, I'd take a lot of advice--including my own well-intended advice--with a big grain of salt.
OTOH, one never knows if something won't trigger an idea that can be very helpful.
I truly hope it does!
I know from personal experience, that VA Disability Income MUST BE REPORTED -- BUT THAT IT IS NOT TAXABLE INCOME! And most computer tax programs word this very clearly, whether you do your own, or pay a tax professional.
Unfortunately, I don't have direct experience with SSDI. I cannot imagine that would one be untaxed, and the other would be taxable. But again, I'm not positive.
I'm posting a diary later, so I'll check several diaries that I've written on the ACA, to see if there is any material that might even be remotely applicable to your situation.
You know, Mr M and I are several years older than you (62), but we've had the legal documents that you've mentioned since we were about age 40. We even have riders about the welfare/care of our dogs, upon our demise. So, to me, it is simply a matter of estate planning--and the fact that one never knows what the future holds.
But this situation is obviously much more dicey. Not knowing her, I certainly can't offer an opinion. But it is so important, I hope that you are able to achieve getting those documents drawn up. (Maybe speak to her parents/siblings for suggestions and/or help on this.)
BTW, I am very closely following the SSDI debacle, and will quickly let you know of any proposed cuts. They are coming, I'm almost certain. It is simply a matter of "when."
I base this on the fact that Senator Hatch's opening statement from the last hearing (summer 2014) mentioned some of the Presidents proposed "solutions" to control costs of the SSDI Program.
And just last week, I found an article with a throw-away line [one of the last paragraphs] that PBO was open to "reforming" SSDI.
Anyhoo, anything that I can find on SSDI and the ACA, I'll sure let you know.
Take care . . .
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
I just finished looking up Estate Planning lawyers
I talked to the banker while doing the home equity line. He had nothing and recommended talking to a tax guy.
Something he said was interesting. The 401K is considered "unsecured" money. It can't be used for collateral, nor can liens be placed against it.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Unless something has changed recently
I believe your 401K money can only be passed to an heir as 401K money for them. More tax implications.
"Never separate the life you live from the words you speak." --Paul Wellstone
True
It gets converted to an inheritance IRA. Mandatory withdrawals are dictated based on the value of the IRA and the age of the inheritor.
Or you can take it as income and pay taxes.
I traced those steps when my mother died.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
What a terrible strain that your family has been
through. The list of tests, some I believe are quite painful, is enough to defeat a very strong individual.
My faith in modern medicine has been tempered by the mistakes they make. They can almost rebuild the human body and do miraculous things but...
In my daughter's case, her specialist prescribed a new drug ("tested on 1,000 people" he said later) which caused her to lose her sight in one eye. Especially ironic since she is a visual artist who runs an art school. So 1,000 people was not really enough for that drug to get approval.
I don't have great advice except that you might try alternative therapies like acupressure and acupuncture to relieve the pain. Even gentle yoga.
I have had experience of using these methods and they really did work.
Best of Luck to you and your family, Tim
To thine own self be true.
Marilyn
Agathena on DKos. I knew that, you leave your name on your pictures.
So sorry about your daughter. I just read an article about how US Republicans want to fast track drug approvals. You know FDA, regulations, free market, blah blah blah ... He it's not like a big pharma would fudge results and knowingly put a dangerous drug on the market (Merck vioxx).
My wife is in pain and we talked to the orthopedist about pain medication. After the surgery, she had hydrocodone. She asked for a time release pain reliever to facilitate sleep. The orthopedist backed away like a dog walking backwards. He basically said that they are powerful and highly addictive. The only way to get on a maintenance dosage is to be under the care of a pain management specialist. We're still negotiating that.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
I wish you luck on this, Tim.
I've been screaming about this topic for going on two years, now.
The crackdown is absolutely unconscionable.
A manufactured and/or exaggerated 'crisis' contrived to abet the neoliberal deficit/cost cutting agenda.
(I've heard scores of C-Span callers screaming about this--many of them, with very painful chronic conditions that they've suffered from for years.)
IOW, the disabled.
One of my first concerns upon reading on this topic and listening to Congressional hearings, was that it would be extended to all patients--including cancer patients, etc.
It is especially troubling since we have so few facilities that specialize in non-pharmaceutical pain management.
I would not let any grass grow under my feet, on this one. (not that you would)
This is a perfect example of the 'austerity agenda' gone amuck!
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
No grass growing under my feet
I reached out because I am ready to make and execute a plan. I have the short term mostly thought through and I am trying to coalesce the long term plan.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Hope that wasn't
too stark or alarmist sounding, Tim.
I've blogged on this issue at two blogs, and honestly--got "yawns."
None of our immediate family is on major 'pain killers,' at this time (or within the past couple years that Senate Dems have pushed this).
So, it was news to me, and all I know is what is on C-Span (hearings, Washington Journal), and in the mainstream media.
Laws reclassifying relatively common pain killers have passed placing restrictions on some drugs [pain killers] that have gone against the recommending authorities' guidelines, in some instances (the FDA).
Anyway, maybe it won't be difficult in your area, since you likely have very excellent facilities in the Wake Forest area.
My intention is not to discourage you, by any means.
You know that I wish you and Sweetie the best!
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
It seems to be in service to the insurance companies
The neurologist wrote a prescription for ambien and the insurance company blocked it. It took several phone calls and trips to the pharmacy to get sleeping pills.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
That makes sense--the laws were at the behest (partly)
of the insurance industry.
The intent was to cut down on 'costs' for insurers--both public and private.
When the ACA was passed, our lawmakers, and the insurance providers realized that millions of Americans, especially those working class Americans who did the most backbreaking work like housing/commercial construction, etc.--also the majority of the ranks of the SSDI recipients (not intended as a put down, this is according to the SSA's own statistics--obviously, their are exceptions)--would be coming into our "public" Medicaid Program.
Not to mention our "publicly-funded" Medicare Program--with all the Boomers and the "bad joints," which legitimately require anti-inflammatory drugs, and as a last resort, pain killers.
Deficit hawks were concerned about the costs to both these programs (for reasons cited above).
Also, private insurers can no longer cherry pick their beneficiaries--and are forced to cover the tens of millions of Americans who have been uninsured, but now will be coming into a system, expecting to obtain medical care--including drugs for their various unattended to medical needs/conditions.
Bear in mind, because of this legislation, the prices of what were relatively mild, previously every day prescribed pain killers, have skyrocketed.
This is the primary reason for the recent spike in heroin addiction in the US.
IOW, the denial of legitimate prescription drugs due to recent legislation, has created a new class of 'middle-class' addicts, so that now it is literally cheaper in some locales to buy street heroin, than it is to have a prescription filled for Schedule II pain killers.
That is, if you can get a doctor who's willing to stick his neck out and even prescribe them.
BTW, I'm talking about Vicodin and Lortab.
Hey, I'll try to cross post something on this at a later date. (This issue has been covered pretty heavily on C-Span.)
Mollie
Postscript: Manchin (an ultra-conservative Dem) and Jay Rockefeller (a retiring Dem) led the charge in the Senate. And there was a flap about Manchin's daughters' interests in this legislation--she is/was the CEO of a generic drug company at the time he was pushing the legislation through Congress. Something about 'conflict of interests.'
Everyone thinks they have the best dog, and none of them are wrong.
I love Physician's Assistants
We had an orthopedic follow up this morning. The PA wrote a prescription for hydrocodone and made the referral to the pain management specialist.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Fantastic, Tim! I've not seen a PA
since I received excellent care by active duty Air Force PAs.
I thought that they always rendered excellent care, and that they always gave us a lot more time than physicians.
It's weird, but in civilian life, we've not run into any at our medical facilities (though there could be some)--only Nurse Practitioners.
**********
BTW, none of my business, but when you see the CFA or CFP (or tax attorney)--whatever you've decided--it's possible that they will advise you to rollover the 401K into another qualified plan, since your employer owns the plan, and you're just a participant (if your plan works like most).
Mr M is fortunate to have a couple of defined-benefit plans, so they will take care of themselves when he calls them in. At age 62, he is just now eligible to do so. But he will be rolling over his current 401K into a dividend paying stock fund, as soon as he leaves work (retires).
Just a thought . . .
Again, I am very happy that Sweetie is getting to start a pain management program. Even though I don't know her, I sorta feel like I do.
So, please let her know that all of your 'blogging buddies" wish her the very best.
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
I never see my doctor during my annual
I always try to schedule with the physician's assistant who gives me a lot more time and is more thorough because of that. She can also prescribe any medications that I might need.
Do I hear the sound of guillotines being constructed?
“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy
Fuck these people.
I mean it, really, fuck them.
The crackdown on prescription pain medication really makes me see red.
I guess the Mexican drug cartels were too tough a customer for the big men to deal with, so they're taking on unarmed sick people in pain.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
I am terribly sorry to read this
I wish I could offer you advice, but it appears that what has already been posted far exceeds what I could advise. Hopefully you will be able to get some good professional advice like Unabashed Liberal suggested. I also would have a serious talk with your wife's doctors about what to expect and the time frame in which to expect it so both of you can be prepared.
I know you do not want sympathy, but I am very empathetic to what you and your Sweetie are facing. Best wishes to both of you. (((gentle hugs)))
Do I hear the sound of guillotines being constructed?
“Those who make peaceful revolution impossible will make violent revolution inevitable." ~ President John F. Kennedy
The doctors are very frustrating
The doctors are non-commital. My own research shows that the disease can manifest differently in each case. It depends on which parts of the nervous system it diminishes. The doctors always ask about swallowing and breathing. I am frightened because there has been change to swallowing and diminished mobility over the last month.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Did your wife work for the federal government?
My partner just went through their retirement disability process, and could offer advice about that, if it's pertinent. My partner is about to go through applying for Soc Sec disability starting tomorrow, so I'd be happy to share issues we encounter and solutions we find with you once I get her OK.
I don't mean to offer false hope, but since they are reticent or unable to diagnose the problem, have you looked into any alternative medicine? There are quacks in that field, of course, but there are also genuinely good therapies for a multitude of ills; I myself would be living a life of chronic pain if I'd kept to the mainstream medical system as it exists in this country. Acupuncture helped me, as did cranio-sacral therapy; let me know if you're interested in hearing about either of these. There are also treatments that focus on the nervous system. Again, no guarantees, but you might at least get some relief for your wife from the constant pain.
I hate the insurance system so much that sometimes I wish I didn't have any (yes, I know that's stupid, it's just that I can't shake the feeling that the whole thing is a very ugly scam). You are right to try to protect your savings from them. Do you have a trustworthy financial advisor? Even a trustworthy accountant can sometimes help, or refer you to someone else who isn't in it primarily to fleece you.
I am so sorry this is happening. Let me know which, if any, of the info I have might be useful to you, and I'm happy to share.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
She works for
Wake County Public Schools. The HR people have been very supportive. It seems like she will being going to short term disability without much ado. Her position will no longer be protected (FMLA), but I do not foresee her ever being able to return. Although, as of Thursday, she still seemed determined to go back.
I would appreciate any insights on Social Security disability. I think that is about a year out, but I have heard it is a difficult process to navigate.
I am open to anything that would mitigate suffering or improve her quality of life. The latest referral is to an ALS unit at Duke. The guy is listed as an recommended provider on the ALS foundation site.
I am certain the doctors do not understand the ailment. We have been dealing with specialists and often come out a spend the drive home talking about what an arrogant putz the doctor was. If you need anything talk to a PA or admin.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
That's good news about her place of work
Re: doctors not understanding, that happens a hell of a lot more often than I'm comfortable with.
I have a disease they don't seem to understand very well (pseudotumor cerebri)
After what we've gone through w/my partner, I'm starting to feel like they don't even understand type 1 diabetes!
The problem with alternative therapies is that often they're not covered by insurance. Though sometimes you can get acupuncture covered.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
I have a question about SSDI, CSTS,
Wondering if SSDI is similiar to VA Disability regarding the determination of disability--only a VA doctor (or one contracted by the VA) can make the determination of eligibility for VA Benefits.
Or, to put it another way, a non-VA physician could say that a vet has a legitimate (qualifying) disability 'every day of the week, and twice on Sundays,' but only a VA physician's examination and recommendation can actually qualify one for VA Disability.
Is this also true of SSDI?
UL
Everyone thinks they have the best dog, and none of them are wrong.
Don't know yet
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Brother Tim
Man, sorry to hear about this. What you've written would scare me too. I know you're strong enough to handle it. You are.
As a retired fed govt employee, I've had it easy relative to health insurance and retirement (pension),
so I don't have the knowledge to help you there. I'm pretty sure the ramp and any home modifications are tax deductions but I'd have to research
that more, and you probably know as much. I know a few people on SSDI and they seemed to go through the process fairly quickly.
Life throws things our way, then we have to adapt. Some good, some bad. I saw a mother in the grocery store last week pushing her kids wheelchair, who probably had MS. That's a lifetime. Changed her life, changed her family's life.
I feel for ya man, and your wife and family. All I can say is try to keep yourself healthy, remember to breath, try to enjoy whatever good time you
have together when it happens.
And you have friends to talk to, so do that when you need it. Thanks for opening up on that Tim. Anything specific comes up let us know.
Al
Thanks Al
I still hit the gym 2-3 times a week. I haven't had a beer since Christmas. Maybe I should drink those oatmeal porters watching the game!
We loved going out for music. Hopefully I can wheel her into a show. The last show before the fall was terrific.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
I have no expert advice to give you.
Will I be able to take care of her? How long do we have? What will the quality of life be? What do I need to do now?
My mom, dad, and father-in-law all came to my home to die, and I was responsible for my mom and dad's finances as well. I ad my FIL about 6 months, my dad about 3 years, and my mom for almost 10. She was 96 when she died. Here are some thoughts. I hope they suggest something to you that will help.
Your questions are good ones, and you need to discuss them with her doctor sooner rather later. Obviously they cannot speak to "her case specifically", but they can speak to her condition and circumstances generally. Have you ever discussed death and dying with your wife before this? How do you think she would handle it? If you are looking for suggested approaches, ask the doctors how you might be able to approach it. A local hospice might be able to help you with this, too.
I would also consult an estate/tax/elder law attorney to see where the legal liability for her medical care and costs ends and begins for each of you. I had a co-worker whose father entered hospital. Upon discharge, they tried to coerce and shame her into providing care she couldn't. She refused, and they had to make alternative care and pay arrangements based on her legal right not to volunteer. Because her name was on everything, she was able to protect up to 50% of the joint assets that she used to supplement his care in nursing home and support her mother. I know this sounds cold blooded and perhaps it is. However, I doubt if your wife would want you to spend you and your children into irreparable debt. Emotionally and morally it is hard, but you don't give up your legal rights just because someone is sick.
You need a will/trust, living will, and power of attorney. Whatever you do, do not give your wife's living will to the hospital or the doctors. The minute you do, they will decide what treatments are in keeping with your wife's living will - not you. I know I want this responsibility in the hands of my loved ones and not some doctor or hospital administrator. I have another co-worker whose mother walked into hospital for something fairly routine, gave them her living will, and ended up dead because of her age.
Contact Area Agency on Aging, the senior citizens club, and service clubs in your area. I think you can get help with a ramp, and they will provide you will a lot of other information, much of which won't be helpful. If you and your wife are over 55, you should qualify as senior citizens. Our senior center has elder law attorneys that do free 15 minute consultations for members.
We might have little good advice to give you, but we are good listeners. Please feel free to share anytime it suits you. If I said anything that sounds cold and indifferent, I apologize. It isn't my intent. I am a rather pragmatic and fact based person that views emotion as a symptom of something that is to be enjoyed or repaired. I am very sorry and wish you and your wife the best.
"Religion is what keeps the poor from murdering the rich."--Napoleon
Thanks DK
The death and dying conversation is hanging over us. I have a goal to get the living will, will and power of attorney done within a week or so.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Gordie Howe had a major stroke, and they were ready to bury him.
It may be too expensive, too much of a long shot, or totally inappropriate; but if I was only 57, I'd want to know.
http://www.mlive.com/redwings/index.ssf/2014/12/red_wings_great_gordie_h...
This is where he went.
Novastem Overview: Conditions Benefitting from Stem Cell Therapy
http://www.novastem.mx/novastem-overview/conditions-benefitting-from-ste...
dk
"Religion is what keeps the poor from murdering the rich."--Napoleon
Probably should be "Irrevocable" POAs. N/T
N/T
Everyone thinks they have the best dog, and none of them are wrong.
This is important:
Social Security disability always says no the first time, apparently. That's what my partner was told. So if they reject you the first time, don't despair. Go back and apply again. My partner has already been rejected once, and has every confidence she will be approved next time.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Somebody I talked to said
... take a lawyer to the first meeting, it cuts out the iterative process.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Definitely get a lawyer, and
Well, I hate to ask, as you're in NC, but I found my Congressman's office an invaluable helper. Um, who is your Congressman? Is there anybody representing NC that isn't a complete SOB?
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Not many
My congressman was a Jesse Helms aid.
They gerrymandered away Brad Miller.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Getting accepted on the first application is a miracle.
"Religion is what keeps the poor from murdering the rich."--Napoleon
{{{Virtual hugs}}}
I'm sorry to hear and wish you and your love peace and happiness.
I wish I had sage advice. I can only offer a little info about ACA. Subsidy eligibility and limits on out of pocket expenses are based on your estimated income for the following year relative to the Federal Poverty Level. The FPL established last month will be the one used to determine ACA calculations in 2016.
Generally speaking below 138% FPL is Medicaid. Be careful because most states (and I have no knowledge about NC) do something called estate reclamation fo medicaid expenses after the age of 55 which in essence means anything spent on your care is taken out of your estate.
Subsidy amounts are a sliding scale and stop at 400% FPL. Make 401% and the subsidy goes away. Currently there are limits as to how much of the subsidy you would have to pay back if it turns out you guessed wrong about your income and received a subsidy. Unfortunately I expect that provision is on Paul Ryan's target list of "changes." And that's all assuming the Supreme Court doesn't nix subsidies for states that do not run their own exchange.
There are several categories within the 400% that determine your maximum deductable and maximum out of pocket costs if you select what's called a "silver" level plan. (Bronze, silver and gold correspond to 60%, 70% and 80% - which is the percentage of your bills your insurance carrier is expected to cover if you're over the 400% level of income.) Off hand I don't remember where the FPL percentages sit for each categoty if memory serves me right the out of pocket subsidies go away at about 250% FPL. Above that in 2015 maximum out of pocket is $6,600 for an individual plan and $13,200 for a family plan.
It's all more complicated than it should be, or needs to be.
"Never separate the life you live from the words you speak." --Paul Wellstone
Thank you, CL. Also, capitation fees can be recovered
thru MERP (Medicaid Estate Recovery Program).
So, if a state has gone to managed care for Medicaid (and the bulk have, but not all)--even if one never darkens the door of a physician), a lien can be placed on the Medicaid beneficiary's estate to recover the monthly capitation fees.
So, it may be a good idea to make sure that you don't shelter income/investments to the point of qualifying for Medicaid.
Also, one of the "changes" that Repubs are looking at getting enacting is to lower the subsidy level to 300%. It wouldn't surprise me if there are enough conservadems to pass this 'tweak.' (snark intended)
But who knows? Maybe (hopefully) not.
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
Yes, be very careful here
Luckily you have a little time to make these kinds of decision since you currently have employer supplied health insurance. There's time for some pencil pushing.
"Never separate the life you live from the words you speak." --Paul Wellstone
I won't hit Medicaid eligibility for quite some time
I will need to take care of operating expenses (cars, mortgage, utilities) and health insurance. It may come down to taking a 401K withdrawal, later this year, that covers 2016 and suppresses 2016 income.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Another thought
Don't know if you have a medical savings account/health savings account however you might want to explore opening one this year while you have a larger taxable income if you don't have an account established. There are restrictions as to who and when you can set up an account, but again - something to explore. It might be a way to shelter some income this year which can be withdrawn to pay out of pocket expenses later.
You can't use these accounts to pay for health insurance premiums unless it's for Medicare however.
"Never separate the life you live from the words you speak." --Paul Wellstone
Good idea--we've had one for several years. N/T
Everyone thinks they have the best dog, and none of them are wrong.
sorry, tim
i will think positive thoughts in hopes for the miraculous to occur for sweetie. i wish you the very best of luck as you confront these issues.
i have some sort of relevant experiences from dealing with my mom who has alzheimers. i know that it's pretty easy to get burnt out by a 24/7/365 need. my brother and his wife took on caring for my mom after a while and they reached a point where they just couldn't keep up. first they tried adult daycare and that worked for a while until my mom hit another milestone and then there just was no alternative but a nursing home.
disability was not an issue because my mom was living off of my dad's pretty generous pension and social security already.
i've heard from other friends that have been through the disability process that the process takes more than one application and that the government is just as bad as any insurance company about accepting a claim. the important thing is to keep after them and also a good disability lawyer can probably shorten the time line.
the other thing that i've heard from friends is that you should do your damndest to protect your retirement savings. i am told that they are about the only asset that most folks have that will be protected (by law) from the depredations of the medical industry and its lawyers.
if there's anything i can do to help, let me know. if you decide to do the ramp building yourself, i'll be happy to bag up some tools and give you a hand over a weekend.
Thanks Joe!
My brother took the load with my mom and alzheimer's. Same deal, it just got to be too much. I am going to care for my wife as long as possible. It all depends on her mobility.
As I mull things over, I am coming to the same conclusion on retirement savings. I just made the lawyer appt. for the living will, will and healthcare POA. He is an estate planning guy, and the intent is to arrange the game pieces to my advantage.
The ramp: I am going to an ALS support group this weekend and plan to see whether they can steer me to any resources.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
2nd verse on retirement savings
I don't know if you saw my comment above. The banker told me retirement income could neither be used as collateral, nor have liens placed against it.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
i think that's due to the legal protection of retirement money
what i'm thinking, if what i've heard is true, is that the best thing you can do is to protect the nest egg and avoid temptations to withdraw from it to pay off debts. it seems to me that your home equity strategy might be a really good one if it turns out that sweetie needs really expensive care. if you draw from your equity on the house (which is probably the asset that the lawyers would go after in the case that the medical debt is too much to pay off) then the lawyers can fight the bankers for the remains, while you retain a retirement income to live on. - granted not pleasant thoughts, but as long as you're thinking several moves ahead...
kind of a wild card but
not sure you'll see this, Tim, but glad you're getting some Real World advice and I hope its is helpful. Anyway I was thinking about you guys and, well ... my husband is a Teacher and he contributes to a (tax-exempt, pre tax) Retirement Fund. He had (still has) a 403(b)... a while back, on advice of his Financial Rep Advisor dude, he added (switched to) a 457(b)mainly BECAUSE he wanted a Fund that he could borrow against. (Which we just did.) There are other tweaks with it too. I think it depends on the specs of the Plan but the interest rate is Prime plus 1% and the catch is you have to pay it back within five years.
So... it might be a long shot or complicated I dunno, but IF your wife as a Teacher is eligible for the 457 (I think she'd have to work for *public* schools) AND I have no idea the rules about it, IF or HOW you could actually convert your 401 funds over to her 457 (not likely), I dunno. Or maybe theres some other way to fenagle it. Like I said, its kind of a long shot idea but maybe you could ask the pro people about it. Just trying to be creative here!
Hang in there...
Saw it
Talking to the estate planner tomorrow
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Tim!
I can't offer any helpful advise but wanted to tell you how sorry I am for what you and yours are going through. I offer my concern and sympathy and wish you the best of luck going forward. I hope you can get a little peace and comfort from the support and love of your online compadres. Keep the faith, brother.
Thanks CW
I appreciate the online compadres. Now more than ever.
Hey, I haven't had to sell any guitars yet!
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Tim, there is no extra funding
proposed (to bail out SSDI) in the WH Budget.
I have a little info that I plan to post here after I have time to check out a couple more SSDI resources.
Honestly, I'd get a "Social Security Consultant" (we have scads of them in both our residences) to handle the actual 'filing for SSDI,' and not rely on a run-of-the-mill CFA/CFP, tax attorney, etc., for anything other than estate planning/general financial advice.
A former Senate budget expert mentioned this week on Washington Journal (C-Span) that the shortfall must be addressed this session.
As I mentioned earlier at EB, Senator Hatch has made it plain since this past summer that he is not inclined to endorse a transference of funds from the "Old Age" to the "Disability" Social Security Account.
If the funds aren't transferred, future SSDI beneficiaries are looking at a possible 19% cut in their monthly benefits unless other 'adjustments' are negotiated.
Many of the SSDI consultant/professionals aren't former SSDI attorneys, but they are former SSDI Administrators (usually GS-12/13/14/15, or GM) federal Civil Service professionals.
Heck, if an appeal to an ALJ is necessary, the latest available figures show that 'on average' this process takes 16 months.
(Didn't find the most recent timeline for the initial filing/determination process.)
Good luck!
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
I will look into the SSDI consultant
If things play out the way it appears. Short term disability, through work, won't end until summer of 2016.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
SSID
Duke Clinic social worker told us that an ALS diagnosis gets uncontested expedited SSID. We will be filling out the application during the next couple of days.
The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself. - Friedrich Nietzsche -
Great news, Tim. Here's
a blurb about filing for SSDI.
Good news about early Medicare enrollment eligibility (the majority of individuals must wait two years to enroll in the program).
http://www.alsa.org/als-care/resources/publications-videos/factsheets/ne...
It appears that in 2003 they lifted any criteria related to 'function' (for lack of a better term), and now require only that the clinical and lab findings meet the generally accepted medical evidence bar.
Sure makes sense to go ahead and file. Don't know if she can draw disability insurance from private and public programs, simultaneously, but if her STD policy through work pays at 50% for one year, and she is forced to choose between the two, there's no real contest. Hopefully, she can qualify for both.
I would be careful and get any answers about the short-term disability policy through the school district, directly from the private insurance carrier.
Just now saw your post when I tried the new "content stream' mode today.
I'm really glad to hear that you've gotten some positive news!
Mollie
Everyone thinks they have the best dog, and none of them are wrong.
Hey, Admin! Is there a way
to make a correction (edit one's comment for typos, syntax, general corrections) WITHOUT throwing the comment back to the top of the comment queue?
Not that it particularly bothers me--but it might be irritating to other commenters.
Thanks.
UL
Everyone thinks they have the best dog, and none of them are wrong.
Nope...
usually edits are made soon enough that it shouldn't present much of a problem.
Thanks, JTC. I'm bad to edit content, so will try to be more
exact on the initial go around.
(And, of course, I cannot allow typos to stand if I catch one.)
UL
Everyone thinks they have the best dog, and none of them are wrong.
Thanks
I didn't know an edit did that. I'll be more careful too.
"Religion is what keeps the poor from murdering the rich."--Napoleon