You've been given some great advice. I just wanted to say "I hear you" and wish you and your husband well. ((hugs))

I do agree with Debby in that there are times when you just have to stand your ground and say this is no longer up for negotiation. I’m going to assume that as most spouses do, you’re acting as his advocate for his appointments and care. It’s not an easy task to navigate and it can be over whelming. (Honestly, I can’t imagine having two puppies in the mix too.) There are times when I’ve gotten frustrated and have had to remind him that I’ve gone to a lot of trouble to make sure he has the best care available, that he’s lucky to have the love and support that comes with that and HE’S GOING TO GO. IMO, that’s not being his mother, that’s being an advocate and care taker who is giving the push that is needed sometimes.

Sometimes we have to embrace a role that is before us and your role right now is to ignore most of what he says and get him to do what he needs to do. It might mean his survival.

I would say to him I know you're afraid but I'm more afraid of losing you. So we must go and see professionals and get some help.

I've skipped through this a bit but want to say I'm sorry for the position you're in, Ilove. First and foremost, I hope you can find him a better doctor. Second, is there a way you can take an extended break and get some sleep while your dh is at work? It's sooo much easier to think when you're not exhausted. And third, I hear you on the perspective thought! I sure do wish you well and hope you and your husband can find some better help.

"it may be that some people feel that to see a doctor means admitting there may be a problem, and they're not ready to deal with that and what may ensue"

Sure, colleenoz, but haven't we all learned that problems get worse when not acted on promptly?

That's certainly true of medical issues. Why make it harder than it needs to be? That's why I really don't get the attitude, it's often "deny and ignore it, maybe it'll go away". But, of course, that's not what happens and small problems can often become big ones when not given prompt attention. Duh.

Thank you all for your great advice, hugs and kind words. I intend to talk to my husband this weekend about the sleep study and getting a second opinion. maifleur01 you mentioned that I should get a POA. I don't understand--what power would a POA give me that I would not have as his wife? I wish I could get some paid time off. Last year I had uterine cancer, and I've used up all my paid time off this year getting follow-up check-ups, attending two funerals (what else?), and caring for my 89-year-old mother after her knee replacement surgery. Geez, I'm such a Debbie Downer. I don't even want to be friends with me.

If there are important things you need to do that are possible only during working hours, can you take unpaid time off?

It sounds like you need to get some legal advice. If the cost is an obstacle for you, look for a legal aid location or community legal services provider nearby to talk about important elder documentation everyone should have.

I thought you might be able to take time off since you said your dh works because he wants to, and doesn't want to retire because he enjoys his work. I'm sorry this isn't an option for you--I sure do understand. May I also say, I like your sense of humor in your difficulties! Keeps you sane, huh?

Oh I totally agree, Elmer, but for some people it's like they have this subconscious belief that if they don't acknowledge a problem it's somehow not real.

I don’t know about the POA, but because of HIPAA laws, you should have a signed and undated release of information on file so you always have access to his care. The doctors offices should all also have a form that he completes that will allow them to discuss his care with you. My DH does nothing but focus on work and staying healthy, I manage everything and it can get pretty darn frustrating when the hospital has screwed up the billing and no one will speak with you without that darn form. Reading your last post makes me suspect you already know this, but I’m saying it just in case one of our many lurkers can use the information as well.

I wouldn’t say your being a debbie downer, sometimes it helps to know that you’re not alone and there are others with similar circumstances.

ilovecomputers as a wife you have no power to even talk to a utility company without your spouse giving permission for you to do so if his/her name is on the bill. Think of all of the privacy laws that are being followed. They block you from all but the most basic information.

First let me state that in most states there can be several types of POA's. The most common type is one that give you the right to handle everything immediately. This includes all financial and health things. Which is the one spouse's need unless they want another person to pay their bills out of their money dolling out an allowance to them. The second most common only starts if a doctor agrees that the person signing the POA is incapacitated for some reason. There are also ones that allow you to direct medical care similar to a medical directive. With a POA you can continue your life as it is.

Without having a POA if your husband becomes unable to make decisions you would need to go to court and have what is called a guardian/conservator appointed. A guardian takes care of the person. The conservator pays all the bills. I had to do that and am finding that even with the necessary documents it is difficult to handle some financial matters. It will depend on your local court as to what you are allowed to do. One set of instructions state that joint accounts are not to be touched without a court order. Recently some state wide modifications have happened and I am now allowed to use the joint accounts to make repairs to the house. Depending on the court you will have to make a report of every cent that is used for your husband with a POA you do not need to make any reports. I am currently looking for a bank to transfer accounts to because my current bank has been notified by their legal department that no one is to sign a Verification of Deposit form stating how much money is in an account on a certain day. The court I am working with wants the bank statements along with this document. Two of the banks I visited with would not accept my conservatorship documents to establish an account. The third would but stated they needed to be recertified and once that was done would only be good for 90 days. My court does not recertify. With a POA I would not be having these problems.

For any spouses or long term partners if you trust the person you are with Please get a POA.

Edited to add the list of instructions that guardians and conservators have to follow in this county. The current judge is retiring later this year so hopefully some will change. If you really want to follow all of this type instructions forget about getting a POA. http://www.circuit7.net/documents/probate/pro400/p422.pdf

My wife's husband has a terminal chronic condition and he is increasingly sleeping more and more hours each day. Thought to just be health, age and fatigue.

She doesn't appear to be losing any sleep over it.

albert what do you think she should do for your condition. Walk the floors all night? She will need all of her energy for later or you may be saying good by to her when she dies of the stress.

"I don’t know about the POA, but because of HIPAA laws, you should have a signed and undated release of information on file so you always have access to his care. "

Oftentimes a legal document that's signed but not dated is treated as not signed.

Signatures on documents should always be dated, no matter what the document.

She is doing exactly what she should i.e. not losing any sleep over it. That was the point I was trying to make.

People have many reasons to not see doctors. Perhaps a lack of trust from some earlier problem, maybe they feel they can't afford dr's and rx's., maybe they do not want to burden their loved ones with caring for them or perhaps they really don't know how ill they are and think it will pass on it's own. I have know people like all of the above.

Wait....Albert, isn't your wife's husband, you?

Elmer once again you use one of my comments to pick apart. The difference between my post and yours is I speak from experience both personallly and professionally and YOU obviously DON’T so let me enlighten you!

Lawyers, lots of doctors offices and most importantly caretakers have signed and undated authorizations on file. Why? Because HIPAA will not allow for the release of information that transpired after the date of the signature. So if my dh signs and dates one today, I can’t use it for anything he does after that date and it defeats the purpose of having it to begin with.

Everyone at some point will be in an illness related situation and you are no exception. Instead of questioning peoples processes, you should be taking notes, as a lot of us have been at this for a very long time and have already learned the ropes.

Now everyone here knows you always have to have the last word, so go for it, you only make yourself look like a fool when you do!

Albert, as the wife of a man with cancer, I find it really hard to believe that she is not freaking out and/or loosing sleep. My guess is that more than likely, she is but she’s just hiding it from you. My DH and I have had our moments of tears and conversation about it, but for the most part, I don’t want him to see me stressing about it. When I am loosing sleep or worried about something, I tell him it’s because of stuff at work. He has no idea that I worry constantly, he doesn’t need to but that doesn’t mean that I don’t.

I'm sorry about and best wishes for your husband.

This comment, as with others you've made before, is anecdotal. "Here's what you should do because that's what I did/do". My comment stands, in many circumstances an undated signature can be viewed as legally invalid. Whether the clerks in a doctor's office do or don't accept it doesn't change that.

Tell that to an attorney when you are in a law suit surrounding a car accident. With a medical authorization, it’s done ALL the time.

Huh? Anything can be signed today with effect to a past date. Everyone should have these docs in place, it's not a big deal.

Stick to what you know from an authoritative source, if giving advice. Really.

lukkirish I have never read or heard before that a release granting information unless specifically mentioning a time or condition was only for release of information before that date. I think that portion of your statement may be incorrect. The ones I have seen other than for ones requesting information on a particular event have stated "any and all". It may be a local thing as some states have added additional requirements.

sjerin you are correct, which is why my snarky comment. Of course none of us get out of this alive.

Maifleur, I am not incorrect though the law is often misunderstood. When medical records are requested, the only records that should be released are the records or information that transpired prior to the date that the authorization was signed. Additionally, the records being released should only include the minimal necessary for the purpose for which the records will be used for. (That is why authorization’s will often ask what the purpose of the request is ie insurance, legal, medical and so on)

An authorization must also state the range of dates the patient is allowing their provider to release or as you describe, any and all. However those dates and any and all are only inclusive up to the signature date of the authorization. If records that fall outside of the specified date range, and/or the date of signature are released in error, that constitutes a breach. I’ve responded to thousands of requests and typically, the authorizations will state something to the effect of a start date to the present (1/1/18-present). Present being that signature date.

(ETA: when an update of care is needed later by an attorney, an insurance company or any other agency, a new authorization with a current signature date is required which is why (depending on who the requester is and the circumstances surrounding it) the date is often left blank and typed in at the time the new request is submitted.)

There are exceptions of course. For example, the authorizations DDS (aka State Disability) has in place specifically state that the request is valid for one year prior to and one year from the signature date. This advises the patient in advance that subsequent requests for records could be made. Another exception would be for an entity that is not covered under HIPAA like the insurance provider, workers comp, a Subpeona from the Court or a medical provider trying to provide continuation of care.

ETA: Even though each State has it’s own set of laws concerning HIPAA in place, HIPAA is a Federal law and it supercedes State law. Rule of thumb is that the law that is most protective of the patient is what is generally used.

Elmer, you exasperate. I’m ignoring you now.

At the risk of getting Elmer started on me.............. I have learned to never respond to the Know-It-All that knows nothing. He just wants to make whoever argue with him. If you say the sky is blue, he says it is green. If you say the sky is green, he says it is blue.

luk in that case none of my husbands doctors could have ever spoken to me until I received his guardianship to tell me that he needed to be in a nursing home. What are commonly called living wills would not be valid beyond the date of the signature. Sounds silly but following what you posted it would be true.

Sherry, I don't "start" on anyone. Disagreeing or having a different opinion isn't arguing.

I'm not referring to this thread or anyone participating here but there are people who don't like it when someone suggests their information is incorrect or offers a different point of view. It's too bad, we can all learn from each other but not when a differing opinion is rejected for the sole reason that it disagrees with what one has said.

Back on to the OP's comment about spousal rights. Everyone needs to follow up with what is the law in their own state as each state varies as to what spousal rights are. Being aware that the laws change all of the time. Many states are doing away with what used to be called "dower rights" which used to protect spouses. Missouri where I live did that two years ago. For a spouse's financial stability and ability to care for a spouse or other friend or relative a POA is in my mind a must.

That's a good suggestion, maifleur. Doing so is best handled by consulting with a lawyer. A free one (like a legal clinic at a law school offering such services or a community legal aid service) is fine if that's all one can afford, elder legal planning is usually not complicated. Remember that the West Coast states (except Oregon) and then running along the Mexico border and ending at Louisiana, plus a few others, are community property states. They're slightly different, one from another, but under such rules income and property acquired during marriage from marital earnings are considered owned half and half by each spouse. That doesn't necessarily address the need for health care and powers of attorney for financial management but especially for couples that have moved into and out of community property areas, situations can be complicated.

Maifleur, When buisness issues are being taken care of by someone who is representing an adult patient, proof of guardianship or some documentation from the courts is required. Absolutely. However, when registering with a new clinic, there is a form that is usually included with the original packet that gives the patient the chance to assign someone who the doctors office can speak to about the patients condition or care and it does not expire until it is revoked by the patient. I know nothing about living wills but I see proof of guardianships on file all the time. They are always needed when a representative signs authorizations from any source that is not excluded or exempt from HIPAA.

luk your office may handle things one way and from what you have written it has little or nothing to do with the OP receiving a POA which would supersede most guardianship/conservatorship documents. Earlier you posted that releases only effected up to the date of the signature which would not help the OP if her spouse became seriously ill because by what you have written any release from the spouse would no longer be in effect. Then you mention the document that does not expire this is the one that is in many states called living wills or advanced directives. This is the one that I was writing about separate from the POA. What you have written could help her and others decide to get her husband/spouse to sign a POA which is the most important part. Most important for anyone reading this is that a spouse may direct but has no authority to have anything done for or to their spouse. They definitely do not have any authority to do anything financial once a spouse is too ill to give verbal or written consent.

Maifleur, sometimes writting like this can get things a little confused and I think there may be a cross in our communications so maybe this will help to clarify:

luk your office may handle things one way and from what you have written it has little or nothing to do with the OP receiving a POA which would supersede most guardianship/conservatorship documents.

I don’t work for any one office. I work for a company that ensures HIPAA compliance for a variety of hospitals and clinics. My responses have not been pointed towards your advise regarding a POA though. My response originally was regarding the post concerning my initial comment that it’s helpful for a caretaker to keep an undated signed authorization on hand. I think your suggestion of a POA was a very valid one.

Earlier you posted that releases only effected up to the date of the signature. which would not help the OP if her spouse became seriously ill because by what you have written any release from the spouse would no longer be in effect.

Yes. This is true, I’ve been through it myself when dealing with my own DH’s Illness. Not with the clinics, because forms necessary to allow me access are kept on file, but with labs, billing or the specialty pharmacy absolutely and it’s extremely frustrating. But I should also add that his illness has not progressed to the point where a guardianship or POA has been on our radar and HIPAA is all we’ve had to contend with. It’s something I’m going to look into though and agree anyone with a sick spouse or family member probably should.

Then you mention the document that does not expire this is the one that is in many states called living wills or advanced directives. No it’s not a Living Will or Advanced directive those are much more advanced. What I’m referring to is just a simple form all patients are presented with (generally during registering as a new patient) when they want to set up free communication between their advocate or spouse and the doctor about their care. It’s kept on file and doesn’t expire but can be revoked or changed by the patient at any time. My DH has them on file with all of his doctors, but if I wanted his records released to say Disability or Social Security, I don’t have that kind of authority. They can only discuss his care with me.

The needs your husband have are obviously more advanced than my DH’s. He is in a smoldering remission but is still actively working and is involved with his care decisions, that’s why a POA or guardianship haven’t been on our radar at all.

This is the one that I was writing about separate from the POA. What you have written could help her and others decide to get her husband/spouse to sign a POA which is the most important part.

I think your suggestion of a POA is a very valid one. It’s not something a lot of people think or know about. You’ve obviously done a great job of making sure you have what you need to manage your husband’s care. I can say from our own situation that the advise is appreciated.

Most important for anyone reading this is that a spouse may direct but has no authority to have anything done for or to their spouse. They definitely do not have any authority to do anything financial once a spouse is too ill to give verbal or written consent.

"They definitely do not have any authority to do anything financial once a spouse is too ill to give verbal or written consent"

This is not broadly true, especially not for accounts in some form of joint title or as community property. For instance, it's not like you need your spouse's permission to withdraw cash from a joint bank account. Or to direct a stock transaction and have the proceeds put into such an account. Other things, yes. That's why mutual powers of attorney for a couple should be in place long before they're needed because the need can come up unexpectedly.

Luk my experience comes from not having a POA and the need to work within my county Probate Courts rules in receiving a guardian/conservatorship and the problems I have had. Contrary to Elmer's comment about joint accounts while accurate in most areas this judge does not allow without a court order. See the attachment I posted above for the rules and regulations.

The biggest problem is that institutions do not want to accept the conservatorship which here is until the court removes or my husband dies. Currently needing to move bank accounts as my current bank will no longer provide a document that I need to file with each years settlement. If I can save anyone from the problems I have and am facing posting even too much information I do not care.

Edited to add that my husband was starting into late early stage dementia of some type. He had a UTI. He became completely unable to talk or use any of his muscles to do anything but bat at the nurses when they came to do something. When you mentioned your husband has a chronic condition so did mine. His neurologist thought he was about 5 or more years from not staying in the home. We thought we had time. Appointment for a POA was in two weeks. UTIs are funny they can cause a mild bladder irritation, can kill someone, or effect the body in strange ways.

mailfleur, I don't doubt that you are facing an extreme situation but it's one that most don't. Don't extend your experience as advice for others, there's no doubt that every jurisdiction is different but few are as extreme. I'm not sure how transactions in a joint account become the business of a judge. I'd love to hear a lawyer offer some insight to what might be going on.

Whether your husband's decision in your separate property state to have a joint account with you was or wasn't prudent, it is what it is.

Maifleur is right. I had to do battle with Spectrum cable company because the account is in DHs name. I have to have him sign A FORM GIVING ME AUTHORITY TO MAKE ANY CHANGES. THAT FORM HAS TO BE NOTARIZED IF NOT SIGNED IN SPECTRUMS PRESENCE. That said......

and having been between a rock and a hard place a few years ago, I was going to suggest that you find another home for the puppies. Also suggest that you stop the volunteer work for now. The work and time involved is exhausting you and if you get run down you will be in a much leakier boat. Parkinson’s doesn’t get any easier.

Also, make an appointment with an elder attorney (or estate planning attorney) immediately. As told above, you can’t know what to expect in the future, but you need to get your ducks in a row NOW, while he still has his mental faculties. If you put it off, it can’t be done if he deteriorates and isn’t functioning mentally. Don’t put yourself in the “I should have done it sooner” position. Save yourself some anguish. You need whatever peace of mind you can take care of now.

Falling asleep is cheap entertainment. Dreams are free.

wanttoretire thank you for the confirmation. Contrary to some, my posts are not to share my mental anguish but to warn others of what could happen without having the proper paperwork which is not just a health directive or DNR document but a POA. The OP has never came back to this thread but if I can keep any other spouse or child who might care for an relative, male or female, from having to go through some of the stuff that I have by my telling what has happened and will continue to happen until my husband dies it will be worth it. Most spousal rights are going the way of the dodo with some of the new laws that have been recently passed.

"Most spousal rights are going the way of the dodo with some of the new laws that have been recently passed."

Would love to learn more about this, what and where? Thanks.

It’s HIPAA run amok. My stepson died in 2003. His mother could not even get a copy of his autopsy because he had given his erstwhile girlfriend all “powers”. The GF also had the sole authority to stop life support.

Elmer you would not believe me so look it up yourself.

"It’s HIPAA run amok. My stepson died in 2003. His mother could not even get a copy of his autopsy because he had given his erstwhile girlfriend all “powers”. The GF also had the sole authority to stop life support."

What's run amok? Someone was chosen by the dead person and it sounds like his wishes were followed. It just wasn't the dead person's mother.

"Elmer you would not believe me so look it up yourself."

You can't look up something without a running start. I don't know what you're talking about and asked for info. If you want to make random, off the wall comments that no one can understand or follow for themselves (without more information), fine.

I have no words right now.......

Ilovecomputers, have you tried medical marijuana for your husband? I've seen so much good on this drug. My husband uses it since no other medications have helped him in 5 1/2 years. While he's not 100%, it doesn't calm his head for an hour or two and he sleeps a bit better (car accident head injury).

Maifluers, I believe you. I’ve heard horror stories and have procrastinated on taking care of something that needs to be done, it just isn’t a task we look forward to doing.

”I have no words right now.....”

wantoretire, welcome to our world. It’s a world where someone (and we all know who) thinks he is smarter and has much more experience than anyone else here, amazingly that includes things he has never even experienced before! And since he KNOWS it all, he believes it’s his job to control threads by correcting and belittling anyone who posts something that he doesn’t feel is correct; especially with women. His behavior is nothing short of misogynistic so ignore him. With any luck, he will eventually get the hint and leave.

I came back to read this after several days.....my only suggestion....put the dogs in crates when you need a little peace and quiet. The rest......I have no idea. Good Lord, folks. Carry on.

OK Elmer start with the basic that I wrote "spousal rights". You could compare those in community property states or non-community property states for property. Each state is individual so what happens in one will not apply in another so just check a few as you well know.

Look particularly at rights after death when there is no will. Most exempt property is not what many think it is and may no longer contain a home. One of the ones that I hope change is spousal rights in Alabama after death.

Where were new laws recently passed (this was what you said) and what substantive curtailment of spousal rights were enacted?

This is an honest question. Your comment suggested a trend and substantive changes I hadn't heard about. That was why I asked.