Is there a Doctor in the house? Trying to understand a death in my family.

[bumpkin]

I know the thread title is kind of cliche and I know it's a long shot that a Doctor of any sort lurks here, but you never know...

About six months ago, my mother passed away. She had been in a nursing facility the past several years after developing early onset Dementia, and without really any notice, she passed. Me or my family weren't even aware she had died until the crematorium who handled her cremation called my father to confirm an address to mail her ashes to; eight days after she died.

I tell people around me including my wife that I'm okay, but I'm really not. I'm having trouble accepting that my mother's gone-gone. I mean she's been gone for a couple of years in the sense that the disease ravaged her brain and body, but the fact that I can't even go see her anymore, whether it's a good or bad visit, is difficult to process. I think it's because she died alone in a hospital, without me, my father, my sister, or any of our other family there to say goodbye. It feels unfinished.

In an attempt to get answers, I had my father get her medical records from the hospital she died in. I've been looking over the pages and pages of notes from the day she passed away, and there's a lot I simply don't understand; doctor/medical speak and such. So I didn't know if there was a Doctor here who could decipher the uncertainty and give me the answers I seek.

 

[dluu13]

I'm sorry to hear this.

I can't help you with deciphering anything. But I'm shocked that nobody contacted your family right when your mom died. They clearly had contact information for your family.

 

[Dude Abides]

Thats kinda weird how the nursing home handled it. Unfortunately I have no medical expertise. Hopefully someone can help you get closure.

 

[FunkyMunkey]

cant help OP, but i would raise all kinds of hell if i wasn't told until 8 days later. i can't even imagine how furious i would be

 

[SlickShoesRUCrazy]

Wait. Your mom died at a home and you guys weren't contacted for 8 days? That is a big red flag no?

Makes sense if there was elder abuse issues...

 

[Ogodei]

No doctor, but i did lose two grandparents to dementia, and death can come swiftly in that state (compare my other two grandparents, one had a major heart attack and lingered for 18 months, one died of cancer and this was telegraphed about 2 months out. For the dementia pair, the final slide was in a span of 1-2 weeks).

You can get dangerous to yourself unless confined to a bed, or just lose the wherewithal to eat or drink.

 

[PsychoRaven]

I'm sorry to hear this.

I can't help you with deciphering anything. But I'm shocked that nobody contacted your family right when your mom died. They clearly had contact information for your family.

Yea. That's fucked up as hell. I'd have been beyond pissed.

 

[Volimar]

Speaking from experience, loved ones with dementia can spiral down the drain physically super fast. It doesn't help that they can't properly convey to nurses when something may be wrong.

Also speaking from experience, it never feels right when someone dies and you don't know precisely why. That's not to say that there isn't more to this, but often you have to accept that you won't get all the answers.

The bit about contacting the family can come down to what's stated in a resident's wishes. Sometimes even when you're the POA, you have to physically tell them that you want to be notified or they won't.

 

[CrocMother]

Where do you live?

 

[Norris1020]

Doctor? I might be asking for a lawyer. Eight days and not even contacted by the nursing home but the crematorium? Was everything set up with the home for a reliable emergency contact or did another relative that might have been an executor know and not tell anyone?

More importantly, sorry for the loss of your mother OP, my grandmother was the same way with the dementia but she passed from a massive heart attack, and the home had the decency to call us as the life flight was on it's way.

 

[adamsappel]

Contact a lawyer, who will find a doctor to interpret them for you. That strikes me as a very odd set of events from the nursing facility. A resident dies, the family isn't immediately notified, the body is cremated without requesting the wishes of the family (this might have been a request from your mother, but cremation is an expense I wouldn't think they would just assume). What did the nursing home say when you contacted them? What does your father think?

 

[Strimei]

It definitely is odd that you weren't contacted for that amount of time.

My own father passed away due to complications from dementia (Lewy-Body dementia, specifically, the same sort Robin Williams had), and he was in a care home too. In our case we were notified well in advance of anything, though we did have hospice involved at the time. But even without hospice, the care home was very good about contacting us (to the point where we actually asked them to dial it back a bit, we didn't need to know everything).

I echo others that say get a lawyer involved. Something is fishy. EIGHT days? The fuck.

Had they contacted you in the past? Maybe they didn't have the right contact info, but you'd think they'd still do their damnedest to reach out.

 

[weemadarthur]

.

 

[Slackbladder]

Where do you live?

Yeah, because this would be unacceptable in the UK, I would thin.

Just to add my own experience. When my mother passed away her death certificate said "complications from Diabetes Mellitus and Parkinsons. Neither were true. She actually had been suffering from multiple blood clots/mini strokes in the brain brought on by
Atherosclerosis caused by 60 years of smoking.
It all started as slowly losing sensation in and then control of her left leg beneath the knee and then her left arm. Her GP was utterly useless and the Hospital was no better. A 72 year old woman with health issues is just not a high enough priority for them, particularly if it looks like it's just old age and they're going to die soon anyway.
Anyway, even though a brain scan showed areas that had been cut off from blood circulation it was too late to do anything (though right at the beginning if she had received a brain scan I believe her death within 2 years would have been averted) and the death certificate was written by someone with scant knowledge of this.
Basically don't expect good service for your elderly relatives. You really need to keep on top of it and keep asking questions.
What happened to you sounds despicable. If you can afford it get a lawyer.

 

[B.K.]

No one told you your mom died? That's really fucked up. I'd be looking for a good lawyer.

 

[bumpkin]

I live in New Hampshire. She was in a nursing facility in the northern part of the state. At the time of her passing, she was at the affiliated/nearby hospital. From what I was told by her attending nurse (at the nursing home), she was sent to the hospital for an eval of some new symptoms that they weren't equipped to diagnose/treat.

I know it adds a whole other level of complexity to things, legally, but due to my father's age and financial situation, my mother had been made a ward of the state when she first was admitted for the long term. Although she did have a D.N.R. order, my father told me that she did not wish to be cremated as part of her religion.

The day my father told me about her death, I called several people, all of whom passed the buck and fed me an "I thought someone had contacted you." line. That included her attending nurse and social worker at the nursing home, the public guardian, and the hospital themselves. They did have contact information for me and my father and had contacted us in the past for prior medical issues.

I've mailed a letter of complaint to several offices (DHHS, the Governor's Office, etc.), but haven't been able to make any traction on legal action. Every lawyer I've contacted has told me they are not able to help me with it, but haven't told me specifically why; though I haven't asked either. I'm in a tough spot where me and my family don't have the finances to fund a lawsuit, so we're at the mercy of finding a pro-bono lawyer that'd take the case.

 

[SabinFigaro]

That eight day stretch of non-communication is definitely a red flag, unless there was some legal finagling beforehand regarding the terms of her passing or by designating her a ward of the state. Even in these instances, it's not appropriate to deprive a family of the knowledge that a loved one passed away.

Are you looking for information in hopes of deciphering the actual cause of death for closure, or do you think there is something more malicious going on (i.e. elder abuse) for which you would consider legal action?

If it's the former, get a hold of the death certificate for review. Directly contact the physician who declared your mother deceased. They can not deny this request. Although I am a physician, I don't think it's appropriate for myself or an outside party to review these records without more context or without being there. There's always a mess of records, both nursing and physician charting, that fills the daily notes and may be indecipherable to an outside party.

If it's the latter, then it may be appropriate to seek legal advice. If you think there was malpractice or negligence, then do so in tandem by contacting state medical and nursing boards.

 

[Malajax]

Sorry for your loss OP.

Not a doctor, but a similar thing happened with my Great Grandmother. She passed away a couple of years ago. She had dementia/Alzheimer's. The whole family got together to see her Christmas. She died a little over a week later with no real signs. The last time my aunt saw her she mentioned her cheeks were cold (in the dying process).

I don't remember the exact time table but say that was on a Tuesday. They were notified of her death the following wednesday. When asked when she died, the nursing home had no idea. The last time the staff had interacted with her was on the same day she had the visit from my aunt. So she could have been dead for a really long period of time, but no one checked on her or notified the family of her passing until long after. It was pretty effed up.

 

[weemadarthur]

.

 

[PsychoRaven]

Sorry for your loss OP.

Not a doctor, but a similar thing happened with my Great Grandmother. She passed away a couple of years ago. She had dementia/Alzheimer's. The whole family got together to see her Christmas. She died a little over a week later with no real signs. The last time my aunt saw her she mentioned her cheeks were cold (in the dying process).

I don't remember the exact time table but say that was on a Tuesday. They were notified of her death the following wednesday. When asked when she died, the nursing home had no idea. The last time the staff had interacted with her was on the same day she had the visit from my aunt. So she could have been dead for a really long period of time, but no one checked on her or notified the family of her passing until long after. It was pretty effed up.

See this kind of shit is why my Sister and I agreed that our mom will never be in a nursing home. We don't care what it takes. Too many horror stories. Not to mention back in the days I used to deliver pizza to these places. So damn depressing.

 

[SabinFigaro]

I live in New Hampshire. She was in a nursing facility in the northern part of the state. At the time of her passing, she was at the affiliated/nearby hospital. From what I was told by her attending nurse (at the nursing home), she was sent to the hospital for an eval of some new symptoms that they weren't equipped to diagnose/treat.

I know it adds a whole other level of complexity to things, legally, but due to my father's age and financial situation, my mother had been made a ward of the state when she first was admitted for the long term. Although she did have a D.N.R. order, my father told me that she did not wish to be cremated as part of her religion.

The day my father told me about her death, I called several people, all of whom passed the buck and fed me an "I thought someone had contacted you." line. That included her attending nurse and social worker at the nursing home, the public guardian, and the hospital themselves. They did have contact information for me and my father and had contacted us in the past for prior medical issues.

I've mailed a letter of complaint to several offices (DHHS, the Governor's Office, etc.), but haven't been able to make any traction on legal action. Every lawyer I've contacted has told me they are not able to help me with it, but haven't told me specifically why; though I haven't asked either. I'm in a tough spot where me and my family don't have the finances to fund a lawsuit, so we're at the mercy of finding a pro-bono lawyer that'd take the case.

Oh boy, I'll tell you what may have happened, which is not an uncommon scenario.

Nursing facilities are unable to handle anything more than simple medical issues. Once your mother was transferred to the hospital, they reviewed her DNR and made their decisions based on that, which likely included no intubation or chest compressions. These orders usually only cover comfort care (oxygen, fluids, analgesics), or minimal support (antibiotics) without invasive measures. Presumably she had a more complex or serious issue (i.e. stroke, heart failure, sepsis, etc.), on the background of severe dementia.

They then likely called the nursing home and/or public guardian to tell them of the passing. These people in turn believed the other person would contact your family. An unfortunate, and unfortunately common, case of broken telephone.

Regarding the terms of cremation, unless this was specifically mentioned in a living will it would have been ignored. If it was mentioned, then you have grounds for a complaint, but likely not a lawsuit.

The question again is what you would like to accomplish with a lawsuit. If you follow the paper trail of the clinical charts from the nursing home to the hospital, it is not likely you will find evidence of malpractice. If anything, this is miscommunication between the nursing home, hospital and public guardian.

Again, I would encourage you to review the death certificate and contact the physician who declared her deceased. You should be able to find his/her contact through the hospital directory or online registrar. That should help you find answers regarding the terms of her passing.

 

[LoganKnight4949]

Hey OP, I sent you a PM.
Would love to help you out.

 

[FelixTheSexranger]

I'm no doctor but nurse who has years of experience in nursing homes. So, I have pretty good grasp on medical reports and medical case summaries.

Sorry for your loss. Pm me if you need help.

 

[bumpkin]

Are you looking for information in hopes of deciphering the actual cause of death for closure, or do you think there is something more malicious going on (i.e. elder abuse) for which you would consider legal action?

...

Again, I would encourage you to review the death certificate and contact the physician who declared her deceased. You should be able to find his/her contact through the hospital directory or online registrar. That should help you find answers regarding the terms of her passing.

I just want to understand what happened in the hour and a half or so between when she was triaged at the hospital and when she died. When the social worker at the nursing home told me, and I quote, "We had no reason to believe she wouldn't be coming back.", that leaves a slew of questions. Her records had relatively detailed notes with times and comments, but I don't understand a lot of the terminology/treatments, etc. I just want to know if she was like "under" and went quietly, painlessly, or if she was alert and something sudden happened.

I did get a copy of her death certificate, and what it lists on it as the COD is not consistent with her illness at all.

If her legal guardian was a court-appointed one, then the nursing home may have contacted them. it would be the guardian's job to then contact the family.

In my state, a portion of the paperwork for nursing homes includes funeral arrangements. The nursing home can be given the direction to call the assigned funeral home directly when a death happens, for them to care for the deceased. Not everyone has advance planning done, but the section is there for those who do.

Did anyone get answers from the guardian about this whole thing?

The guardian didn't have any answers other than telling me times which were not consistent with the medical records (by a few hours). He simply apologized for not contacting us, he sounded like the others I contacted who said they thought the other(s) had contacted us. It was a clusterfuck. The worst part was he didn't sound even slightly apologetic, sounded rather matter-of-fact. If I could have gone through the phone and punched him in the face, I would have.

 

[BizzyBum]

I think it's because she died alone in a hospital, without me, my father, my sister, or any of our other family there to say goodbye. It feels unfinished.

I know how this feels, man. My grandma died of cancer in the middle of the night in a cold, dark hospital room with no one around her. Even when she was home or we visited her at the hospital I never spent a ton of time with her, probably because I just couldn't accept and process what was happening. Last time I saw her was being wheeled out to an ambulance in comatose.

This happened 6 years ago and still bothers me to this day, probably never going to really get over it.

 

[SabinFigaro]

I did get a copy of her death certificate, and what it lists on it as the COD is not consistent with her illness at all.

Fair enough.

My condolences for your loss. I hope you find the answers you're looking for.

 

[HawksWinStanley]

cant help OP, but i would raise all kinds of hell if i wasn't told until 8 days later. i can't even imagine how furious i would be

Uh yeah, this. I'd be lawyering up immediately.