For those that are completely disabled

[[Pt...]]

Pleasebehere, because it's a catch 22 scenario. That's why there's a protracted group on here, the members who are suffering for so long, years, come back and post on this forum and what does that do to people who are only a couple weeks or months out? If they think they will be suffering for that long extremely, they might make unthinkable decisions. They can't handle the truth. People early on dont for WANT to believe there is even a possibility that they won't heal. But the possibility exists, just like any other forms of brain injury.

But I recently read a post on the protracted where a member said they waited and waited for years only to make little progress. He/she wished he would've made arrangements for his family and life earlier and not wasted all those years waiting for something that never happened (a full recovery).

It's likely I'm not going to heal tomorrow. It's likely I'm not going to heal in a month. Especially when symptoms have been constant. Days turn into months turn into years. So I'd rather be proactive in the things I can control, because I don't have control over if and when my brain will recover.

 

Ptsdmiracle I see your point and you're a smart woman. I also think it's better not to sugar coat things. When I see blogs with people being homebound after 30 months, I realize it's OK for me to hold at this dose. I'm not risking that outcome. Which is unlikely but not impossible. I still think you will more likely heal. You're young and your brain is definitely working well.

 

Thank you very much for your kind words. You are a smart woman too for holding while being functional. Sugarcoat is exactly the right word to use. I

realize I have nothing else to lose lol so for me to think this way doesn't make my situation worse.

It's completely strange I am able to articulate like a non injured person but other functions are affected. I am able to think about things I SHOULD and WANT to do, but to actually execute a task is completely impossible.

[[va...]]

Miracle that's a very common wd sxs. I had it before the updose. Parker describes her in her post. I hope in four months you're able to execute again. Fingers crossed for both of us.

[[Qu...]]

It's understandable that people want to reassure ptsdmiracle that she will improve. Those are surely heartfelt motivations. But it has now become (in part) a debate about whether we heal or not, or if we should discuss protracted withdrawal or not. Those debates happen daily all across the forum.

 

But the OP asked some very important, practical, and prudent questions that anyone, even someone in perfect health, should consider. And they are questions that do not get discussed here daily. If this information has been offered elsewhere on the forum, she (and all those interested) could be directed to it.

 

Also, perhaps setting her affairs in order will give ptsdmiracle some of the peace of mind that responders are trying to help her with, and relieve some of her mental burden, allowing her to concentrate on her recovery. There have to be many, many members of this forum who have considered these questions, and taken the necessary steps, and therefor have the experience or expertise to offer useful guidance. Or at least point the way. Some posters have already done so (topofthebotton's and Marigold's stood out, sorry if I missed others). It also took some time to write this, so apologies if posts have been made since I started typing that I've not taken into account.

 

So, I would encourage a reengagement with the original question(s):

 

Are you making arrangements for the future in terms of health care and financial power of attorney, and other practical steps to protect yourself?

I guess my question is, knowing my specific situation, does anyone have practical advice on how the American system can help me in the future, and what I should be doing to protect myself in the long run? Do people on here have advice or experience on setting up power of attorney? If no trustworthy family members in the future, does a social worker typically take on this responsibility?

 

I believe many people would benefit from a discussion of these questions, as well as related matters that the OP may not have considered, but could also find useful.

 

Miracle (I really like the sound of that part of your handle as a shorthand for your name), here is an excellent resource that was put together by BIC (Benzodiazepine Information Coalition). It will not address everything you are asking, but it covers a wide range of options for those facing issues of disability and what services are available to them. Your situation may differ, some of the options are very income-driven, but it is a reasonable place to start. As an adult, your parents' income and yours are separate in terms of taxes* and so you may be eligible for services that you wouldn't normally consider.

 

https://www.benzoinfo.com/2019/12/02/financial-aid-resources-and-disability-information-for-benzodiazepine-harmed-patients/

 

Consulting both disability and estate lawyers would probably clear up many issues for you, and are the logical first steps. They will have different areas of expertise, and one area of advice may complicate or conflict with another area, or they may not, but at least you'll have options, and then you just weigh what's best. As far as I know, much of this could be done over email (or regular mail if there are privacy concerns), so that the information is written down for you to consider carefully, and you wouldn't have to sit in an office if you are too symptomatic. Lawyer's are happy to bill you for phone calls as well.

 

If you do not receive all the answers you need on this thread to allow you to move forward, or if it just dies out, I suggest you ask again with a second thread, perhaps with a subject line that makes your goal unambiguous. Your current subject line invites a more wide-ranging discussion, and some with experience with the questions you are asking may overlook it as a result. Something like "Young Person Requesting Advice on Long-Term Financial/Disability Planning." That may not be what you want to express, I don't know the proper vocabulary surrounding this topic, so, as always, use your best judgement. You're good with words. Just choose something that is extremely clear concerning the kind of help you are looking for.

 

There are different methods, options, and answers for those who are worried about a future with no personal and familial resources, and those who are looking to protect income or assets (say an inheritance, however small) going into an unknown future.

 

Questions concerning who can make decisions over your health are another matter as well. I would be very wary of signing away any rights to self-determination in terms of hospitalization, etc. Whatever is decided should be on your terms and should be very specific about what someone can and cannot choose for you. The person who is understanding and sympathetic today, may not be so tomorrow. Again, some of the posters have given great, specific advice to your questions, but I think you are looking for more, and for further clarity. I have only broad strokes to offer, hopefully others can fill in the gaps (and offer corrections or clarifications).

 

There are multiple threads on the forum concerning the supposed dangers of eating asparagus. Certainly there is room for questions about safeguarding and providing for your (potential) future financial, legal, and medical needs, however unlikely you may need to avail yourself of them. Especially considering those are issues that actually have answers.

 

You are making smart choices already by asking important questions.

 

quiet

 

*I initially wrote a bunch of stuff about taxes, but I'm really a tax idiot, so I'll leave that up to others. I would just suggest consulting a tax attorney or someone who helps with tax preparation for a living. You might be entitled to some write-offs this year already, and in the unlikely even that this stretches on and you are unable to work, your parents could claim you as a dependent, and that could have repercussions (good or bad, I couldn't say) for your planning, your ability to get benefits, etc. So just consult experts whenever you can. People always worry about the cost of talking to professionals (and if you don't have the money that makes total sense, I never did), but there is a reason why those with money have tax and estate and all sorts of attorneys--it ends up saving them lots of money (and keeps them out of jail).

 

[[Ba...]]

Top, I don't have family other than someone who definitely do NOT want involved.

Who do I give POA to?

A friend has turned out to not be interested in me... have a cousin in another city would do it probably... I need to do it.

 

Thanks.

[[Li...]]

Hi

 

Just curious.. why do you think you might not fully heal and be left with multiple debilitating symptoms?

 

Why is your brain different to everyone else’s?

 

You’ve only been off all brain altering chemicals for 2 months... this is very early days...

 

I've been off of benzos  for 8+ months. Nothing has changed for the better. Mirtazapine didn't touch my symptoms for better or worse so I had no problem coming off of it.

 

It may have not, or seemed as if it has prior. But due to your sensitized brain mirtazepine does have a significant effect on your withdrawal. Remeron/mirtazepine has drove many people crazy with countless adverse effects.

 

 

[[Li...]]

I think i will get some improvement but because i have brain damage from the strokes (2nd one more than the first) obviously the area of the brain that has died means that my cns will be more fragile and more prone to setbacks. Since the last stroke 3 months ago my wd sxs are worse than acute. I lost my vision in this last stroke so yes i am permanently disabled from bwd. Dr's agree with this.

 

Are you blind? Or your vision is just distorted?

[[Ba...]]

Mirtazapine fried me.

 

But would appreciate talking to someone who can advise me-- being old person.  I realize need estate atty, I think... how to control things as much as possible?  But who to name for stuff when you are very isolated?

 

thx.  If someone would not mind speaking to me, pls message me...

 

Thanks pstd for bringing this up

[[to...]]

An attorney who deals with estates and "living trusts"is an option.  You can make your estate trust attorney your trustee if you have no one else.  I made my trust attorney co-trustee with my daughter as  a check & balance for important decisions (financial & medical).  You set up all the options and actions you want to happen in the trust document when you are no longer capable of managing your own affairs.  In that event, the person(s) you name as your trustee is obligated to follow your instructions. A living trust also bypasses state probate if your estate is worth over a certain amount (varies from state to state). 

[[Ba...]]

Top, if one person is nearby, tho really not your friend any more, and if another is relative knew well but not so much now, should not trustee be more local person as they would come look over your stuff... sell things?

POA... what i fyou can't decide stuff?  That is diff than trustee, right?  thx.

[[to...]]

BarbaraAnn...

 

The trustee is obligated to carry out your wishes with regard to  personal property, financial, medical, etc.  But yes.... you have to be the one to make those decisions so they can be codified in a document.  These are decisions only you can make and that can be very difficult in trying times like we are going through.

 

So the trustee is not the one who decides who gets the grandfather clock, your house or your life savings.... only

you can decide that. Maybe someone from a local church could help you make some of those decisions. I left a substantial amount of my estate to a charity.... an option if you have no relatives or children.

 

I will point out that  the trustee is obligated to expend all your resources

for your health and welfare above all (before anyone gets anything).

 

Yes... finding someone locally to act as your trustee is preferable.  I have even heard of  people having their bank

act as trustee.  Yes... it would  be preferable if a relative would agree to take the position as trustee but

not always possible.  Depends upon what your estate is worth, but I think a living trust is the way to go and

a lawyer who specializes in preparing living trusts should be able to answer your questions and guide through the process.  At the very least, I think it would be worthwhile to find an estate planning attorney in your area and have an initial consultation to see if its the way you want to go and get answers to some of your questions.

Depending on what your estate is worth, it may that a simple will delineating your preferences would suffice.

 

I know these are difficult decisions to even have to think about making in these trying times. I have been doing the exact same thing and it is most difficult with half my brain tied behind my back.

 

[[Bl...]]

I had a rather large trust that has now been depleted because my husband had to take off work so long to help me , he has since recently had to go back to work in another state  . Tonight the insomnia is so bad I am going on 24 hours with zero sleep .

 

I am 57 and was kindled badly and lied to by my dr in 2005 when I came off this the first time , I do not think I will ever be 100 % again . I lost 5 years tapering and now a year totally off .

  I am going to be buying long term care ins when my husband gets a few more paychecks going  so I can go into a decent care facility if something should happen to him , All my family is dead and my kids are terrified at what has happened to me and can barely speak to me much less take care of me so if something happens to my husband I would be out on the street unable to function .

[Guest [so...]]

Miracle i have to say you have started what has turned into a very good discussion, one i can't remember ever seeing on BB, it is so raw, and real and unashamedly authentic. Thank you everyone.

[[Bl...]]

My neurologist is aware of it. He has said it can take 6 years or more for the brain to find a way to reregulate neurotransmitters.

 

He says I am so sensitised everything is in complete chaos.

 

My doctor said this to me also

And brain being very neuroplastic

 

The only dr that ever believed this also told me 2-3 years in my case at least . Ajusta and I both have alot of physical problems in w/d and were given this for physical issues If I remember right .

 

[[Li...]]

I guess my question is, knowing my specific situation, does anyone have practical advice on how the American system can help me in the future, and what I should be doing to protect myself in the long run? Do people on here have advice or experience on setting up power of attorney? If no trustworthy family members in the future, does a social worker typically take on this responsibility?

 

Hello, Ptsdmiracle. Hats off to you for thinking about and planning for your future! I found the following online guide helpful when assisting an older relative who is also disabled:

 

How to Get On

https://howtogeton.wordpress.com/

 

You also might find resources related to estate and long-term care planning for solo agers (older, single, childless adults) of help.  For example, Sara Zeff Geber’s “Essential Retirement Planning for Solo Agers.”

 

Finally, have you considered consulting a professional who specializes in geriatric care management? Many of these professionals also assist younger adults who face the challenges of disability or serious illness. Geriatric Care Managers can conduct an assessment of your current and future needs, determine types of services needed, and assist in engaging and monitoring those services. For more information:

 

What Is a Geriatric Care Manager?

https://www.nia.nih.gov/health/what-geriatric-care-manager

[[Aj...]]

I simply can’t afford to sort out POA in the U.K.

 

I have written will and have a DNA order on my medical notes.

 

 

[[Pt...]]

Does it cost a lot to have this initial consultation with an attorney?

 

If my parents co-own a house and have paid it off, in the event that they pass away, how can I make sure I automatically inherit the house without having to go to the court or meet with anyone ? Can they list me as a deed?

[[Aj...]]

Just found out I can do it without a solicitor and get discount because am in disability benefits. So will sort it this week.

[[Li...]]

If my parents co-own a house and have paid it off, in the event that they pass away, how can I make sure I automatically inherit the house without having to go to the court or meet with anyone ? Can they list me as a deed?

 

My parents created a Revocable Living Trust (revocable means you can change the trust if your circumstances or wishes change). The deed to the house held by the Trust.  I was named as the executor.  The Trust made settling their estate much more straightforward and faster than having to go through Probate. 

[[Cu...]]

I need all this information.  I don't know how I'm going to process it all, in present state.  I've revised my Will several times.  Doing anything now beyond getting myself fed, ordering in groceries/food, putting out garbage/recycling & retrieving pails, paying bills & distracting myself online, is overwhelming.  In constant physical pain.  Can barely focus on a tv show or online...things have gotten worse in last 10 months, post-jump.  Early on I did revise beneficiaries on IRA's & annuities...whichever accounts I could simply fill out the forms myself & send in, w/out requiring an attorney or going to bank to have signature-guaranteed.

 

Even before the tolerance w/d set in, the whole living trust & revocable living trust was confusing to me.  I also desire to have a DNA order in place.  Always told that it's to be signed each time in hospital, or surgi-center.  (I still don't know why this can't be a permanent document. ) 

 

Of late, I realize I will probably need to be investigating in-home health care, as well as some personal care...which, I dread & didn't want to think about, but I'm not caring for myself very well, anymore, at all.  Cousin is busy still working & on w/e's visiting out-of-state, elder-Mom, who's not in good health.  Friends' busy w/their own lives & none of 'em online (except for cousin, who, the last thing wanting to do after work is to be online).  -  Online being quickest source of research/info to assist me w/home health care.  -  To make any legal changes, will also require an in-home attorney visit.  The attorney who'd prepared my Will was in another County & while extremely nice, trusted + qualified, I wouldn't even have the heart to ask her to come to me...although, as I'm typing this, I think it is best to contact her for a recommendation in my area, that I can trust.  I just don't feel up to these tasks, @ this point in time.  I've risen to all of life's challenges & I'm spent.

               

[[Pt...]]

How does one go about finding a power of attorney when there's no one you trust beside your parents? There's no way I trust my cousins who won't even lend a hand when they know how sick I am. I don't have any trustworthy friends. Do people use connections at church? Or a designated social worker who knows your case? What do people do in this scenario?

[[to...]]

I would give your parents POA. If you set up an estate plan through an attorney, (even just an attorney who help you draw up a will) you can make the attorney back-up POA to your parents if they are unable to serve as primary POA. You have to be careful who you give this power to as they can make life/death/financial decisions as though they are you.

[[Ka...]]

Miracle, you'll get better, don't worry, you don't have any other conditions that could prevent your healing do you? You don't smoke, don't drink, are trying to eat healthy with lots of fiber and veggies in your diet, resting plenty, ecercising some right? You are only 30, your brain will mend itself, its too soon to write your will yet:) im kidding but seriously don't freak out those people youve talked to on protracted, you probably don't know their history, their other conditions that might delay healing, you don't know how they live and what theyve done to get better, so hang in there, you'll be better, give it another year, you are a short termer, i can bet youll be so much better by next Xmas, sending you healing vibes today 

[[Qu...]]

topofthebottom,

 

Is it possible to give someone a kind of "limited" POA? To stipulate, contractually, what they can and can't do? Or to at least impose some kind of guidelines they must follow?  I.e. no forced hospitalization, no use of funds for certain things (unwanted therapies, unwanted drugs, etc)? Or to state preferences that must be followed (except perhaps under extreme circumstances): an example might be wishing to have permanent at-home care, rather than the POA deciding to sell the house and have the person placed under in-patient care? I guess a simpler way of asking this is: does giving someone POA give them total power?

 

thank you so much for helping ptsdmiracle and others asking these essential questions on this thread.

 

quiet

[[Aj...]]

In UK you can write an advanced care directive as well otherwise known as a Living Will. It can be added to medical records.

[[to...]]

topofthebottom,

 

Is it possible to give someone a kind of "limited" POA? To stipulate, contractually, what they can and can't do? Or to at least impose some kind of guidelines they must follow?  I.e. no forced hospitalization, no use of funds for certain things (unwanted therapies, unwanted drugs, etc)? Or to state preferences that must be followed (except perhaps under extreme circumstances): an example might be wishing to have permanent at-home care, rather than the POA deciding to sell the house and have the person placed under in-patient care? I guess a simpler way of asking this is: does giving someone POA give them total power?

 

thank you so much for helping ptsdmiracle and others asking these essential questions on this thread.

 

quiet

 

Yes... you can set up a "limited power of attorney"  as opposed to a general power of attorney. A limited power of attorney does not grant the broad powers of a. general power of attorney and can restrict your Agent to handle only specified matters on your behalf.