I get HIPAA, but sometimes it sucks. My Grandfather died this morning.

[Ruby the Liberal]

(GD Hosts, please indulge this rant, or advise redirect where I can get feedback, which I will be happy to accomodate)

He was 91, a WWII USAF veteran, a proud founding member of the Elks Club, a manufacturing industry Union Leader and an all around good guy. He lived a very good life, until the end.

He didn't die comfortably of old age: he died of malnutrition, dehydration and a potassium deficiency.

He was hospitalized 3x in the past 2 weeks for this, and it was known to and documented by local area medical professionals - but not family. HIPAA.

Decades ago, his wife, my grandmother, was diagnosed with a plethora of mental illnesses (baseline was paranoid schizophrenia), was hospitalized until stable and medicated to maintain.

Although people of means, this diagnosis was not comfortable to them in "polite company" (including medical professionals), so some 17 years or so ago, it was unilaterally "decided" that things unspoken just don't exist in the real world and the whole diagnosis/medication was simply "not discussed" much less maintained. In the intervening years, no one was allowed to discuss this with her local doctors (much less forward medical records from her time institutionalized). Not even with the assisted living facility they pumped a chunk of their life savings into.

No medication, no therapy, no nothing.

Did I mention that these were people of means? Pension medical, medicare and military retirement - the only obstacle was the paperwork on who should be billed for what.

The challenge is that my grandmother is certifiably insane. Sybil, Faces of Eve, Carrie insane. All attempts at getting her help were blocked by her 'right to privacy'.

Well, boys and girls, heres how the story ends. She, at 5'5" and 110 pounds, decided that she needed to go on a "diet". My grandfather was too weak to go to the assisted living cafeteria on his own, so relied on her for food. Because she couldn't help (due to her "diet&quot , she stopped feeding him.

Three trips to the ER in two weeks (all with diagnosis of malnutrition with dehydration and a potassium deficiency), he finally got out of bed this morning, walked to the bathroom, collapsed and died. A shell of the man he was. He died of malnutrition and dehydration as the meals brought to him/them the last week were denied.

I *get* HIPAA, but for fucks sake, when family steps in and says "here is the medical history, please READ and HEAR us", (FOR DECADES) isn't *someone* supposed to pay attention - or at least pretend to?

Tonight, I said to mom "I am so sorry you lost your Daddy, I hope he is resting" and she responded "and I hope hes not hungry".

Fuck.

Thanks for reading.

[gateley]

1. ...

I don't know what to say. This breaks my heart.

[Ruby the Liberal]

12. Thanks Gateley.

Sick situation all around.

[Ken Burch]

49. Mine too.

There is no way this is acceptable.

[CurtEastPoint]

2. I'm so sorry for your loss. And yes, there needs to be some

sanity in that law. Nothing should prevent someone getting the help they need.

[Ruby the Liberal]

13. Thank you for getting my point within the rambling rant. nt

[bluestateguy]

3. When there are too many laws the first casualty is good old fashioned American common sense

That tends to happen when the lawyers get involved.

[lunatica]

4. This made me cry

((((((((((( Ruby the Liberal )))))))))))

My mother's family was like that. She's from North Carolina in the deep South. Mental illness is never, ever acknowledged or spoken about. It is humiliating to the family and can cause the total loss of any good reputation in the community. Reputation, or at least not having a 'bad' reputation is everything. If they could have gotten a law passed I'm sure they would have. Or maybe some of their crazy neighbors would have.

[Ruby the Liberal]

17. Lunatica - thank you for getting this.

The whole "if we don't talk about it, it isn't real thing" has made me crazy my whole life.

This isn't something to be ashamed of - claim it and treat it.

[elleng]

5. Fuck, indeed.

This situation is the most dramatic I've heard about, but no surprise, I guess. I've WONDERED about the situations which might occur since HIPAA.

HIPAA was initiated under Clinton, wasn't it? Lots of 'unintended consequences' from those years; this, Don't Ask, Glass-Steagall repeal.

[Ruby the Liberal]

18. Elleng, I don't recall. I give HIPAA much credit

but there are times when it fails us all.

To be expected - no law is one-size-fits-all

Thanks for weighing in. Your reputation as a former attorney precedes you

[elleng]

20. Thanks, Ruby.

That's the problem, of course, no law can be one-size-fits-all to be universally fair.

That's RETIRED attorney, not 'former;' never disappears! (AND especially in my family; its in the genes!!!)

Thinking of your dear grandfather.

[Ruby the Liberal]

38. Once an attorney, always an attorney.

[bart95]

6. i am sorry for your loss nt

[Ruby the Liberal]

19. Thank you. nt

[REP]

7. I'm very sorry for your loss

There are ways to assume legal responsibility for your grandmother so she doesn't starve herself to death. If you wish, I can post them, but I won't now; I know you are grieving a terrible loss.

[Ruby the Liberal]

21. REP, honestly, I am not grieving.

I am pissed. I didn 't see *this* coming, but it didn't surprise me.

Been on the phone today talking about this with mom/family, and the best we have been advised is that short of an Alzheimers dx from walking off (which she doesn't have), we are out to sea on getting help so that she now doesn't hurt herself.

I will take any suggestions, links or even hunches that you may have in the hopes that *something* could prevent further loss. Moreso from others than herself at this point.

Thank you.

[REP]

27. Medical guardianship (not medical power of attorney)

Some links:

http://www.agingcare.com/Articles/how-to-get-guardianship-of-elderly-parents-140693.htm


http://www.ncbi.nlm.nih.gov/pubmed/11579732


http://www.illinoislegalaid.org/index.cfm?fuseaction=home.dsp_content&contentid=5099&print=yes (for IL, but provides a lot of info)

[Ruby the Liberal]

39. Thats my girl.

Thank you. Will go through them tomorrow.

I SO wish I had brought this up years ago...

[robinlynne]

87. get a lawyer. there are remedies. they are not easy. I am doing it right now in my family.

It is extremely painful to do. the emotions are difficult to deal with. You request a conservator for your grandma in Court. . She will get angry. There are standard tests given to find out her capacity to take care of herself. it doesn't matter what papers you have from the past.
Anyone in the world can bring this to court, family member or anyone. The court will decide if the person can or can not take care of themselves.

Anyone who is danger because of their own capacity or because of the undue influence of others.
Someone in the famaily can become the conservator, or you can hire independent people who do that for a living.

[Ruby the Liberal]

92. Thank you.

[Mimosa]

146. My sister and I had to do it.

My grandmother had senile dementia.

[Firebrand Gary]

8. Ruby, I am so very sorry for your loss. My heart goes out to you and your family.

I will keep him in my prayers. Sending you light and love in this difficult time.

[Ruby the Liberal]

22. Thank you Gary.

[Behind the Aegis]

9. Thank you for sharing this story.

My deepest sympathies.

[Ruby the Liberal]

25. Thanks BtA

[William769]

10. Ruby you already know where I stand with you.

I'll always be here when you need me.

Bill

[Ruby the Liberal]

26. Thanks you Bill

Tomorrow - for Granddad. I can see the smile now.

[MADem]

11. The only thing you can do is try to get older loved ones to sign a waiver authorizing you to have

access to their medical records. It's not always easy, but sometimes you can make it happen with friendly persuasion.

I do wish doctors had the time to deal with patients in such a way that they understood that these sorts of things often need the entire family involved. A doctor making that suggestion to a patient often helps to overcome patient resistance. Patients will not want their relative to have access to their records, but when the DOCTOR says it's a good idea, they get over their objections.

Also, you can say anything at all TO a doctor about a patient--you can tell them things the patient won't tell the doc--the only thing is, the doctor cannot acknowledge anything you say or write to them. Sometimes, though, that kind of info is helpful to the doctor who has a patient who is lying to him or her. I say write that letter to the doc if you think a loved one isn't being straight with the MD.

I am so sorry for your loss. I have been going to too many funerals lately. It sucks. And 91 is too young if everything's still working. Damn.

[LiberalFighter]

74. It seems to me that maybe the doctors might be clueless.

It seems strange that if one has medical POA that person has control of medical decisions. Is the medical POA active now or until certain events occur? I'm guessing you have medical when something drastic happens that prevents her consent.

I had one sister with financial POA and one with medical POA mostly based on convenience. And the one with medical didn't have POA until my dad was unable to respond.

It might require the court to take care of this.

[robinlynne]

90. I think she is mistaken about having POA. The doctors have to abide by the law. If she has POA, she

has access to all medical records.

[robinlynne]

89. doesn't sound like you have power of attorney then. Have you read your documents carefully?

[robinlynne]

102. Then she DOES NOT HAVE POA. She will have POA in the future IF your grandma is deemed incapacitated.

Your family needs good advice. There is a bunch to learn about these hings. What you described is NOT POA. not even close. You need to speak with people who know about elders.
hippa has NOTHING to do with your problem. Misinformation is the problem. And the information is not there unless you actively seek it.

you need to hook up with an elder law person. the Alzheimer's association can recommend people to you whether or not she has Alzheimer's. (They serve all elders with any sort of dementia.)
there are support groups out there. there are free legal services. but you have to go look for all of it.

[robinlynne]

110. start with the alzheimers associaiton. Read verything on tehir webiste.

because it is free. they will not really help. But they have tlons of information.
you will need to hire an elder attorney. not an elder abuse attorney.
An elder attorney.
Do you want ot tlka on the phone?

[robinlynne]

111. sorry for all the typos.

[Ruby the Liberal]

114. LOL! I read you just fine.

Elder attorney. I can do this. Will start looking tonight.

Thank you for all of your help (and questions) on this thread. I greatly appreciate your knowledge as well as correction on using the wrong terms - which could just go off on the wrong path with an attorney and end up costing time/money not needed.

I can see someone gunning for a lawsuit because they were under the impression that she had/has daily in-home care.

[robinlynne]

116. the first interviews with the attorney re generally free.

interview at least 3 different ones. They all have completely different strategies, and personalities, and prices.
that's why i say read everything you can on the Alzheimer's association website. there are millions of downloads, articles, and books available on this subject.

Then you will ask the attorneys better questions.

the social workers at the Alzheimer's association will talk with you on the phone for free. they are very nice and can teach you some, but they do not really do anything. you think you have help, and you don't really.
I foundthat out the ahrd way.


still a great way to learn more.
Learn as much as you can, and hire an attorney.

Elder abuse is what your grandma did to your grandpa.
independent living, where they live is for elders with full mentla capacity,
not for people who have a problem caring for themselves.

[MADem]

127. Have you tried going to court and getting guardianship or something on those lines?

I have a relation who used to work with the very severely mentally compromised as well as the mentally ill, and there used to be some bit of business a family member could get from the courts -- almost like Santa in Miracle on 34th Street after he bopped the Macy's shrink over the head with the cane, but less heartwarming--where the adult is under the care and control of a family member (or in the case of Santa, another upstanding citizen) because the balance of their mind is disturbed, or something along those lines.

It had a catchy little name, a little code word that all the people in the mental health "biz" knew what it meant. It allowed the person to act almost in loco parentis and have access to medical records, etc., like the adult was a little kid in their charge.

I'm betting some of the lawyers here know what I'm babbling on about...!

[Ruby the Liberal]

128. Nothing has been tried along those lines

This all just happened this weekend and caught everyone off guard with the severity of the consequences from "looking the other way".

This will be an interesting week (to say the least).

[MADem]

130. Pace yourself, and try to stay calm. I know, easier said than done.

Good luck and hang in there--I hope you can get some of this business well and truly resolved, otherwise this will be like a sword hanging over your head--or at least the sense of waiting for that other shoe to drop.

[Ruby the Liberal]

133. Actually, getting all of this off my chest with you all

is extremely therapeutic. I have a funeral to attend, I need to be able to grieve, and I need to not feel the need to throttle her the next time I see her. The anger is just chewing at me.

This is easing all of that and then some.

[MADem]

134. Well, that's a small bright spot in a bucket of misery, I guess. Get enough sleep, too, though.

It will help you if you're well rested, you'll be able to 'maintain' and hold onto the realization that she probably has no damn clue what she's doing. It's probably time to step up her level of "assisted" care so she's got more sitters monitoring her conduct.

That whole grieving and anger thing can take a lot out of us--I was going from wake to funeral to wake there for a bit, for people who died too young for stupid or unfair reasons--it sucks. I sometimes think I only see old friends and family at these events! Way too few weddings, way too many funerals. Such is the way of this modern life, I guess!

[robinlynne]

88. Actually you dont need any medical records. You need an elder attorney.

[nadinbrzezinski]

14. I am sorry for your loss

I want you to know you did what you could, short of a court order...there is little else you could do.

It is the down side, the dark side, of it.

[Ruby the Liberal]

29. Thanks Nadin.

[joshcryer]

15. I'm so sorry. :( That's so sad.

Wow. What a sad story.

[Marrah_G]

24. Thats just awful

I wish I could hug you. I'm so sorry for your loss.

[Ruby the Liberal]

32. Well, here is one from my family for offering.

He lived a good life, just didn't deserve to die this way - not when this was preventable.

Knowing my grandpa, he would have preferred to die jumping out of a plane (at his age).

It is just so frustrating. Thank you for weighing in.

[robinlynne]

91. This happened in an assisted living facility? with people supposedly watching, taking care of them?

nurses and doctors ignoring someone starving to death?

[Ruby the Liberal]

97. They didn't know until the 2nd hospital trip (of 3)

When they found out, they started delivering food daily (which my grandmother threw out). They also sent a dietician and a physical therapist - but he was asleep on those visits and she wouldn't wake him to talk with them. Sorry - I didn't include that in the OP, its in a followup post below.

The problem is that they never notified family that this was happening (or what actions they were taking) until after he died.

Do note that all 3 hospital visits were in a 15 day period, so happened rather quickly.

[robinlynne]

100. In assisted living the meals are watched by the staff. Sounds like you mean independent living?

Assisted living does not work that way.

[robinlynne]

108. the point is, she is in the wrong kind of place. This does not happen in assisted living (theoretic

theoretically) becuase people are watching every meal, , every pill.

[WillowTree]

30. Damn, those "unintended consequences"!

That's s dirty, rotten shame, Ruby. My heartfelt sympathies to you and your family.

[Ruby the Liberal]

33. Thank you, WillowTree.

[ornotna]

34. Oh Ruby, I'm so sorry.

I can't find words that would help.

[Ruby the Liberal]

44. Your response helps loads.

It is going to be a weird week with the whole "now what" conversation.

Thanks for weighing in with your support on it all.

[Ruby the Liberal]

44. System Dupe

It is going to be a weird week with the whole "now what" conversation.

Thanks for weighing in with your support on it all.

[Ruby the Liberal]

44. System Dupe

It is going to be a weird week with the whole "now what" conversation.

Thanks for weighing in with your support on it all.

[pnwmom]

35. Yes, HIPAA can be a real problem when a family member is mentally ill.

A friend of mine had a mother who had been diagnosed schizophrenic, but was able to maintain a largely independent life for decades with medication. However, when she finally needed serious help it was impossible to provide it. My friend went to court to try to become guardian, but her mother -- who was extremely intelligent and manipulative -- said all the right things to the judge, and so she wasn't declared incompetent. That meant my friend couldn't get a hold of the medical records to prove her mother's hospitalizations and suicide attempts.

Her mother's resistance was one reason it was so hard to help her -- the other was the HIPAA laws, and the bureaucracy. I understand now why so many people with schizophrenia end up on the streets. My friends mother didn't, but it was only because of my friend's unending patience and persistence.

[Ruby the Liberal]

41. Thank you for this.

God forgive me, I don't want her on the streets, but if thats what it takes to knock her into reality, then I will get out of the way.

I can't believe I just said that, but then again, she starved her husband to death and refuses to acknowledge it OR get help.

Blah.

[pnwmom]

57. Your feelings are completely understandable, after what you and your family

have gone through.

[Ecumenist]

36. Oh, dear Ruby, I don't know what to say....Please accept my deepest sympathies for your grandpa

and your family's broken heart. Damn, "ASSISTED LIVING" ??! The term is ASSISTED! Why didn't someone consider that something was wrong, let's not even consider the mental illness, what about the fact that a large number of elders that go into Assisted Living facilities have dementia or are beginning a descent into it and/or develop syndromes and illnesses where the cardinal symptom is anorexia or loss of appetite?


Oh Ruby, dear lady, I am so sorry that your family and your grandpa was let down so terribly by all the powers that be . May your family be blessed and comforted, your grammy given the help she so desperately needs and your grandpa is surrounded by paradise, his loved ones who have gone before him and never hungry EVER again.


Damn, why do things like this happen to the best ones among us?

[Ruby the Liberal]

42. Sweet sister,

That is the problem. They are confined by HIPAA. Mom and her sisters confronted them today about the issue (and I am happy with the response) but it is decades too late.

This man didn't need to die of starvation.

[steve2470]

37. Ruby I'm so sorry for your loss *hugs*

I worked with the mentally ill from 1986-1988, and neither I nor the involved families ever had any problems with the law or with the bureaucracy. Yes, it was no cakewalk to get someone treated against their will but at least it could be done with enough time and persistence.

There needs to be a clause in the law that allows for family members/eyewitnesses to go to court to overcome the law in very tightly written extraordinary circumstances.

Again, good wishes and good vibes for you.

[Ruby the Liberal]

43. Thank you, Steve.

Any suggestions you may have (albeit internal self-protection at this point) would be very valued for future instances.

[steve2470]

72. all I can suggest is reading the law from cover to cover and getting a good lawyer

A good lawyer = one who is very familiar with mental health/aging law in your jurisdiction. Again, best wishes and many good vibes

eta: I started a petition to get Congress to change HIPAA HERE

Another similar petition here

HIPAA Law text here

[glinda]

109. Thanks. We are dealing with this now also.

[Ruby the Liberal]

115. As suggested to me above as well, I am going to

contact my State rep (who I adore) about recommendations for an "elder" attorney. He hasn't let me down yet in assisting me with identifying professionals whom he respects.

Thanks for the links.

[Monk06]

40. The right to privacy and independance in medical cases has become an excuse by health authorities to

avoid having to deal with the problem. This is primarily cost driven but also lawsuits that have eliminated compulsory mental health treatment as an option even in extreme cases and even with the family's cooperation. Unless they have money the mentally ill end up on the street. This is the same in Canada so no bragging on my part.

[Ruby the Liberal]

51. Thank you for pointing this out.

I get HIPAA. Truly, I do.

I guess the problem is with the elderly (like my grandparents), there is such a stigma about mental illness that prevents people from seeking treatment.

So - allow privacy, but can't the doctors at least take into account previously diagnosed medical/behavioral history - even if the patient is reluctant and family brings it to attention?

[robinlynne]

93. but if they were in an assisted living facility and a man starved to death, isn't that criminal?

In assisted living, everyone eats in public; the caregivers check on everyone every day. I'm not seeing how this can happen and the place can stay open.

[Ruby the Liberal]

99. They eat in public if they go to the dining hall.

This 'assisted living' is a 2 bedroom apartment. No one checks in on anyone, and each individual living there has a medic alert buzzer thing that they are supposed to wear (or have on them) at all times to signal when they need help. When they need regular skilled care, they are moved to a different area of the complex that has daily nursing care (and where, we hope, she will now be going).

My grandmother did signal the 3 times he fainted, and then when he crashed in the bathroom and died - so it isn't like she didn't know how to use it.

[robinlynne]

103. It is not assisted living then. It is independent living. if they can eat at home.

[robinlynne]

104. sounds like your Grandma needds assisted living and is in the worng place, if she made decisions

which caused starvation. Seems like that fact alone should be enough to get her the care she needs, either with your Aunt caring for her, or into an assisted living facility.

Right now she is living in a system for people who are completely clear headed and always able to make decisions..

[Ruby the Liberal]

112. I am just sick that no one had any idea this was happening.

My mother and aunt go to visit 1-2x per week. Why didn't he speak up?

When they found out what was going on (or had been happening) this weekend, the first thing they did when they got back was check the kitchen. Some crackers, a freezer burnt pizza, some OJ and a half a Creme Pie. Thats how they found out she was throwing out the food being brought in by the care folks. It was untouched in the garbage.

No one ever dreamed this could happen, so no one thought to ask (or physically check).

[robinlynne]

113. That I understand. completely.

[Alcibiades]

121. He may not have spoken up

because he may have had some cognitive issues as well. Few folks who make it to that age are still as sharp as they once were. Also, if he was used to keeping his wife's peculiarities quiet, this may simply have been part of the same pattern.

I am sorry for your loss. Mental illness is troubling in geriatric patients. It was something your grandfather probably had to deal with more than anyone, and it's a big strain for a younger person to deal with such a thing, so it may have been a strain on him as well, so he wasn't making good choices regarding allowing his wife to control his food intake.

[Monk06]

143. The point is at least in Canada people who are mentally ill cannot be committed to mandatory

treatment unless they have admitted to suicidal ideation (yes that is a word) or committed a crime. If you have the financial means you drop through the cracks in terms of intervention by social workers or other health care professionals unless you specifically ask for it.

The poor woman in question was undiagnosed and because the way things are set up killed her husband without being aware that that's what she did.

There is no way she should have been allowed to be the sole care giver for her husband. But unless you are collecting social assistance in Canada social work services are voluntary. I suspect the same is true in this case.

[pacalo]

44. I'm so sorry, Ruby.

And I totally understand. My husband & I have been griping against this for almost eight years now in regard to our son's "right to privacy". At 18 yrs. old, we couldn't even walk with him into the admission office -- our first heartbreaking taste of "right to privacy".

[Ruby the Liberal]

58. Sister - there are so many 'goods' and 'bads' about this law

That I don't know where to begin.

I don't know your history, but my heart is with you.

[Snake Alchemist]

50. That is awful. My sincerest condolensces. We just had a major debate about HIPAA here.

http://www.democraticunderground.com/1002521227

[robinlynne]

117. I strongly have to say that hippa has nothing to do with this family's situation. nothing at all.

[roguevalley]

52. I am so sorry. He didn't deserve this. There is no way to express how badly I feel for you and him.

[kag]

53. Thanks for sharing your story, Ruby.

And I am so sorry all around.

My grandmother cared for a friend with Alzheimers for years (this was pre-HIPAA), and I know from her experience how draining it was. i can't imagine what this must have put you and the rest of your family through. Sending warm thoughts your way.

[LeftishBrit]

54. I am very sorry about your loss

[LadyHawkAZ]

55. ((((Ruby))))

[uppityperson]

56. Aw Ruby. Your poor grandfather.

There were privacy issues before HIPAA was put in place but it has some serious problems.

I don't have words for you or your mom, sounds like it just sucks. I am sorry.

[barbtries]

59. i'm sorry for your loss.

RIP grandpa

[Morning Dew]

60. Oh, Ruby, that is just heartbreaking.

[malaise]

61. Really sad

[Zalatix]

62. Wow, what a horrible situation.

I'm sorry that happened to you.

[ProfessionalLeftist]

63. I am sorry for this unnecessary loss.

And your anger, hurt and frustration is 1000% justified. Laws are useless unless they are written with some semblance of common sense - an ingredient sorely lacking from our lawmakers today (and the corprats who control them). Just look at Santorum, Willard Rmoney, and the rest. Off the rails every one of them.

I wish I could do or say something to make you feel better.

[Ilsa]

64. I am so sorry for your loss.

Frankly, I don't understand why the hospital doctors didn't call for social services to intervene. If I had been working there, I'd have recommended a social worker to begin the process of investigating what help at home is needed and for possible abuse of the elderly.

While is part of the problem here, so is a system that allows the elderly to slip through the cracks.

[YellowRubberDuckie]

65. That infuriates me.

I am so sorry for your loss. I feel so bad for your family. I know there is nothing I can say to make you feel better, but I hope you find peace. Your grandfather, I'm sure, has.

[MerryBlooms]

66. Just awful. I'm so sorry. ((hug))

[ejpoeta]

67. my dad made my two sisters his health proxy.

that way they could know everything that was going on and make health decisions for him. It came in handy at the end when he was no able to make those decisions for himself.

[susanr516]

68. I understand your pain and frustration

My husband is going through a lot of this with his parents right now. His mom is starting to have problems with dementia, but his dad is still sharp as a tack--and stubborn as a mule. Right now, they're both in assisted living, but his mom really needs a 24-7 caretaker watching her and we cannot get his dad to understand that. Currently, his dad allows my husband to go along on all dr visits, but his dad has final say on what help they get. His mom is legally blind, has lots of balance problems, and forgets that she requires using a wheelchair only and assistance getting into and out of it. She's fallen several times because they didn't want to "bother" anyone by asking for help, and it's just a matter of time before she suffers a serious injury. We finally got them to get a caretaker in during the weekdays, but (I think) his dad is afraid that a caretaker will say his mom needs to be in a skilled nursing facility, so he's resisting.

His dad refuses to let anyone else have medical POA, so we're just living in fear that his mom is going to suffer a fall that will kill her. Just yesterday, my husband was over there and his mom was insisting upon using a walker--and his dad was letting her do it, said, "She said she was ok with a walker." My husband made her get back in the wheelchair, but what else can you do?

[Ruby the Liberal]

78. I can definitely appreciate what you are dealing with.

I am sorry.

[polly7]

69. Ruby, I am so, so sorry.

My condolences to all of you. Safe passage to your dear Grandfather. Peace to all of you, but at this time your anger and frustration seem well-placed. I'm so sorry.

[ellisonz]

70. The system doesn't function.

My best wishes to your ohana.

[Generic Other]

71. This is so sad to hear

I am so sorry. Families should not be left out.

[renate]

73. how unimaginably sad

I am so sorry. I'm glad he had a good life for almost all of his 91 years, but it's undeniable that the end of it was heartbreaking. I hope that once the frustration and anger fade a little with time, eventually it'll be easier to focus on all the good and less on the bad, which understandably is front and center right now.

Many many hugs to you.

[steve2470]

75. kick for evening crowd nt

[elias7]

76. I am sorry for your loss, but I think elder abuse/neglect trumps HIPAA

Why wasn't he admitted to the hospital for dehydration/malnutrition and hypokalemia? I am an ED physician and if family members told me that he wasn't being fed, we most certainly would address the issue. The patient would be admitted and social services would be involved. Two, let alone three visits to an ER in a short time is a red flag and would usually get attention to explore social issues.

If elder abuse/neglect by the primary caretaker (wife) is recognized, that would be need to be addressed by the physicians and by social services with other family members. I don't understand how they would not get the story if you were there to tell it. I'm kind of missing how HIPAA is a focus here, pardon my denseness.

Again, sorry for your loss.

[Ruby the Liberal]

79. He was - but only overnight all 3 times.

Last edited Sun Apr 8, 2012, 10:54 PM - Edit history (1)

No one knew about 2 of the 3 visits, and insane grandmother made up some shit about his blood pressure on the one she did tell people about. The only way that family found out he was being starved was talking to the hospital AFTER he died and was taken there to try to revive him. All 3 visits were by ambulance - so that was also documented. It wasn't until after his death that family was able to get ANY information out of the assisted living facility. Seems THEY knew, and tried for over a week to take food to him every day, but insane grandmother was apparently throwing it away - also confirmed, but after the fact. Assisted Living also attempted to send a dietitian and a physical therapist to the apartment after the 2nd ER trip, but she wouldn't allow either of them to speak to him.

This is why I am so ticked - my HIPAA issue is her. Yes, we could have done something about him being starved if we had known, but the fact that NO ONE has listened to any pleas for assistance over the years with HER is my issue here. Physicians have been approached by family for many, many years now, begging them to review her medical/pharma history - but to a one, they aren't allowed to talk about it or even take the information and do anything about it. Had people paid attention that she isn't capable of tending to a ham sandwich (or a pet rock), much less an elderly man in need of assistance, this wouldn't have happened.

Good news (if one can call it that) is that now he is deceased, doctors and the staff of the Assisted Living facility are NOW talking with my family and attempting to address this issue as best they can, without it "invading her privacy". Why it took that is beyond me, but apparently, now she is a danger to herself or something similar which opens a new lid on it all.

Thanks for your perspective, and no - it wasn't dense. I was on a rambling rant and probably didn't make any sense.

EDIT - I am using the wrong term. This is Independent Living, not Assisted. They are/were not checked on a regular basis - it was up to them to press an assistance button if they needed help. Sorry if that caused any confusion, I was corrected above about the difference. There is assisted living in the complex, but not where they/she were/are living.

[Ruby the Liberal]

80. Self-delete

Posted in the wrong spot.

[elias7]

120. Thanks, Ruby, I understand better now

Frankly, sometimes someone has to take charge and say screw HIPAA when other concerns supercede. In this case, it sounds like medical staff would not have been privy to what was really happening. The facility was probably asked to send a dietician (because he wasn't eating) and a physical therapist (to assess safety/mobility in the home). But if the facility knew and tried to send food, one option they would have had to take charge and raise concerns over the fitness of his caregiver (grandmother) or force a social service visit over concerns of elder abuse/neglect.

But, in the absence of family member input (you were kept out of the loop), and barring your grandfather's ability to express what was going on, your grandmother's word would be likely the most influential, unless she was clearly off her rocker.

What an awful situation for your grandfather, and a terrible thing for you and your family to go through.

I'll certainly try to be more vigilant of similar situations on my watch...

[Ruby the Liberal]

122. You just posted a ray of hope for me.

Too late for him, but if this experience has helped anyone else (in any capacity) in preventing this from happening to another soul...

Thanks for that comment.

[Number23]

83. I agree with every word of your post

elder abuse/neglect trumps HIPAA

And that's exactly what it was. Abuse. So horrible. And it makes you wonder if the wife is so ill if she even recognizes what she's done to her husband.

[Ruby the Liberal]

86. I have not spoken to her.

Too pissed - and afraid of what I will say (she SLAPPED my mother for no reason after they went in to identify the body, which freaked out the medical staff as it was totally unprovoked), but those who have been with her all weekend can't tell if she gets it from one minute to the next that he is even dead.

[Number23]

135. I almost have sympathy for her as well. She is obviously quite ill

This whole thing has been tragic, for your entire family. I am really sorry to hear about this.

[robinlynne]

95. me too. hippa is not the issue. If there is elder abuse you bring it to a judge to investigate.

[proud2BlibKansan]

77. Ruby this breaks my heart

My sister is mentally ill. I know exactly what you have been going through. It's so frustrating!

I wish I had something to offer you other than a hug. ((HUG))

[one_voice]

81. Ruby, I'm very sorry for your loss...

and even more sorry that it was under these circumstances. I wish I had some words of wisdom, or some advice, but I don't. I can only offer my sympathies and wish you and your family strength and peace.

[Ruby the Liberal]

82. Thanks for all of he well wishes and vibes, everyone.

It truly has been a long weekend.

[Honeycombe8]

84. How sad. But any expert you consulted to "treat" grandma COULD have gotten

her medical records, I think, on a "need to know" basis. If you read those long HIPPA releases, the care providers are allowed to release records to other care providers and insurance companies, even if the patient doesn't permit it. There's other language in there about the reason the care providers can do that, but I forget what it is.

The last time I signed one of those I noted the language that gives the care provider the right to release the records to other entitites that it deems necessary for my treatment, the payment of bills, or whatever.

It basically prevents them from releasing your records & info to other family members, unless you give authority for it, to your employer, and people like that.

People are declared mentally unstable, etc., without their consent quite frequently, I think, even w/o reviewing their prior medical records.

[Ruby the Liberal]

85. Tried almost 15 years ago.

Got the Doctor who treated her in the 80s (in another state) to forward copies, but she refused to release them and then burned them on her stove.

They will not re-release them without her written permission, although this incident may have changed something legally about that given her actions. We will know more in the coming weeks on how that is going to play out as appointments with various medical professionals she sees will be scheduled this coming week.

[robinlynne]

98. Ruby, I really dont think you need past medical history to prove there is a current problem.

of course it would be easier, but you don't need medical records. You need a current evaluation to be made.

i'm not an expert at all, but dealing with something very similar in my family and it is heart wrenching. We have no medical records. not necessary. Even if I did I wouldn't make the records public for different reasons. but it is not about hippa. It is about hiring a lawyer.

[robinlynne]

106. the past is over. you can act now. Your fmaily needs to hire an elder attorney. and get your grandma

out of this living facility.

[yardwork]

137. This problem with treating the mentally ill predates HIPAA by decades.

I'm not sure about the history, but it became illegal in the U.S. to involuntarily commit people decades ago. Before that, there was a lot of abuse. My great-grandmother died in a psychiatric institution to which she was involuntarily committed by her husband, who clearly just wanted to get rid of her. There was no evidence that she had any mental health problems, but her husband said she did, and in those days that's all it took. She died of pneumonia in a horrific institution.

So, sometime after WWII the U.S. changed those laws but that created a new problem - what to do about people who are obviously mentally ill but deny it and refuse to access care. And the mental health system has been so defunded - to the point of dismantling it in many states, that even when people want to access care they can't get it.

I'm so glad that you started this thread. This is a huge, huge problem in the U.S. and it's only going to get worse as our population ages. Again, I am so sorry for your family's loss and pain.

[Honeycombe8]

139. Okay, there's something odd about that. That dr. could lose her license for destroying

records outside of her regular procedure for destroying records. Maybe she's unethical, and she doesn't want another psychiatrist to see her supposed diagnosis? There's something weird there.

I am wondering if grandma is indeed insane or mentally impaired to the point she needs to be institutionalized. If that's the case, a dr. doesn't need to see old records. There must be some procedure to have someone independently examined and then institutionalized if necessary. Maybe the person has to do something bizarre or possibly harmful to herself or others, but you say she has, so you have that requirement covered.

[Ruby the Liberal]

140. Would it make a difference in what you just said

if I said no doctor destroyed anything - she set her own records on fire in her kitchen on the stove.

[Cerridwen]

96. You have my sympathy...and my admiration.

My sympathy for your loss and my admiration for being able to sustain a coherent thread/conversation so soon after your grandfather's death.

I'm one of those overly-sensitive types who cannot move beyond grief right away.

It takes me days or weeks, in some cases months before I can write or talk about my loss. Even then, many times, it just won't flow.

I'm relieved to see so many "bleeding heart" liberals who have left their "bleeding hearts" behind.

I hope you heal quickly and sanely. So mote it be.

[Ruby the Liberal]

118. Thank you.

Her behavior over the years has been intolerable to me. I kept in touch with him regularly via email the last few years, but it was all I could do to tolerate her during holidays. All of the "look the other way" nonsense just sent me right over the edge when it never had to be like that.

I haven't grieved yet because I am still SO PISSED that I could spit nails. Literally.

It will hit me in a day or so.

[yardwork]

119. I am so sorry for your loss, Ruby.

This sounds like a very complicated situation. I agree with the other posters who suggest that you consult a lawyer.

I'm so sorry for your grandfather. It seems like the assisted living facility should have been making sure he was getting his meals.

[Ruby the Liberal]

123. That was my mistake, Yardie.

He wasn't in assisted living - he was in the level below that where they don't have regular visits for food and medications. Staff only shows up when asked.

Why this didn't get caught. From what I have learned in this thread - the next level up would have had professional, trained eyes monitoring the situation. They didn't have that, and at their age (forgetting her illness), probably should have.

[azurnoir]

124. But the question remains just why on earth did the hospital release him?

he was if I am reading this correctly in the ER 3 times in a relatively short period of time for the same reasons that alone should have led to the hospital taking steps I am very sorry for loss and the feelings associated with a preventable death

[Ruby the Liberal]

125. Thank you Az.

These are questions we are hoping to get answered this week - especially given *3* times in 2 weeks. That is just beyond belief that red flags weren't raised somewhere, but maybe I am missing something and it just all happened too quick for the proper channels to connect. Prior to this weekend, no one (family) even knew more than 1 visit had even happened. So many on this thread have been extremely helpful as to where to go from here and what questions to ask now that it has happened. <3 DUers and their hidden nuggets of wisdom.

What we know right now is that he was kept overnight each time, put on IV fluids and amped up potassium and then sent home.

To their credit, the hospital did contact the facility, who did attempt to intervene with food delivery and dietitians/physical therapists after the second ER visit. It wasn't until after he died that the hospital/facility/family got on the same page (somewhat) and found out about her withholding food due to her desire to "diet". Pieces are still (hopefully) going to fall into place.

Thanks for the condolences. This didn't have to happen. This life didn't need to end this way.

[yardwork]

136. It sounds like a lot of things went wrong - a perfect storm.

HIPAA may end up having little to do with this. It sounds like the main culprit is our notoriously fragmented health care system, particularly the weaknesses in our care system for the vulnerable elderly. Many providers who treat the elderly recognize what a problem it is to ensure that their patients receive appropriate follow-up care. Some hospitals now have teams of geriatricians and social services providers who work together. Their number one goal is to include the family in communication. However, very few hospitals have this level of care.

Adding to the complexity is your grandmother's severe mental health issue. The hospital probably was communicating with her and thought that she would provide the follow-up care for your grandfather, but she was unable to do this effectively and was, in fact, the source of the problem. It sounds like this was not recognized until it was too late.

If I understand what happened correctly, your mother and other family members had been attempting to intervene because they knew that your grandmother was not a healthy caregiver for your grandfather. They were stymied in their efforts somewhat by your grandfather himself, who didn't want to give medical powers to other family members.

I am so sorry for your family's pain. This is heartbreaking.

[Ruby the Liberal]

142. Thats pretty much it, right there in a nutshell.

Good news is that it looks like there are going to be several meetings this week and next as to what to do going forward, and with family included - now that there has been a death, the whole 'privacy' thing is looking like it is going to be out the window (or at least most of it).

If ONLY they had listened before, this could have been prevented.

This thread has really helped me get some thoughts out there and out of my head. My biggest deal now is how to move passed being LIVID about this so I can finally grieve like a normal person at the funeral.

[yardwork]

148. I suspect that the retirement community and hospital may be citing HIPAA to cover themselves.

I would be livid, too.

[Terra Alta]

126. I'm so sorry.

My thoughts and prayers go out to you and your family.

[frazzled]

129. Very sorry for your loss, but I'm confused

about the connection to HIPAA. Did your grandfather (not your grandmother, but your grandfather) make a formal objection to having his health information shared? Because HIPAA permits the sharing of medical information to family unless it is blocked by the patient.• If he was hospitalized three times, you could have known. If the senior home knew enough that they were aware your grandfather needed food, then they should have shared that information with you when you called to inquire about his condition. This doesn't sound like a HIPAA failure, but perhaps I'm confused.

Elderly people, especially when they are near the end of life, do not eat, even when provided with every opportunity. It's part of the death process. I've watched it, and it's hard to take. (My husband and I tried to feed tiny spoonfuls of Ensure to his mother during the last month of her life, and she wouldn't even swallow that.) It saddens me that your anger is directed at your mentally ill grandmother. I'm not quite clear on how someone not in their right mind is being blamed for this incident. Maybe it's just too late for me to read the story correctly.

*From HIPAA:

To make sure that your health information is protected in a way that does not interfere with your health care, your information can be used and shared:
With your family, relatives, friends, or others you identify who are involved with your health care or your health care bills, unless you object

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html

[Ruby the Liberal]

132. When she moved out of her original state of residence 20 years ago

she refused all medical followup. Repeated attempts to get her medical records transferred to her new doctor were denied and once medical records were actually sent, she set them on fire on her stovetop because she didn't want the diagnosis (stigma?).

She has been untreated for this disease for 2 decades now.

I wouldn't trust her to care for a pet rock much less an elderly man who couldn't get by on his own means.

My grandfather was confined to a walker for mobility and could not prepare his own meals. He relied on her for that, and she decided a few weeks ago that she didn't want food in the house because she was on a "diet". This came out on the 2nd of 3 ER visits when he told the staff that he hadn't eaten in days, and was too weak to get himself to the facility dining room.

I am sorry my anger about this saddens you, but this was not how this man should have passed. He deserved better. This could have been prevented.

[WillyT]

131. :( ::::::

Peace...

[irisblue]

138. ruby and your mom

i cannot type well thru tears.

[Ruby the Liberal]

141. Thanks.

I am hoping to get to that point this week. Still have steam coming out of my ears, but that phase will pass.

[Amaril]

144. Ah, Ruby -- my heart aches for you.

Such a sad situation -- so sorry you're having to go through this.



Hang in there, chica.

[Mimosa]

145. In case this happens to anybody else...

It can be difficult but when an elderly person requires help the kids or grandkids have to get an attorney and have the elder declared incompetent.

In this care granny was incompetent. With an attorney's help it could be proven. The assisted living center should have brought grandad his meals or escorted him to the dining hall when he was able. Short of an attorney and having an elder declared incompetant, nursing facilities do have people who will help in these type of situations IF they are 'leaned on'.

[RainDog]

147. I'm so sorry for your grandfather's experience

the world is strange and cruel.