Mother is dying,. I'm angry -- Let the COVID lawsuits fly!

[ChristinaC71503]

My mother is dying "in a few days." I spent today rewriting an obit I started at least a couple of years ago.

My mother was fully vaccinated, by which I mean two shots. I had given permission, before COVID started burning through her wing, to give her the booster, a pneumonia shot (which I found suspicious), and later, both verbally and via email, to give monoclonal antibodies, which was not on the menu, but I wanted it to be. Was told, "Our pharmacy is out. If she is symptomatic, we can get it in five days." I was really nervous when I heard her cough, because she never does, and then was moved to another wing, and when the cough had gone, I let out a sigh of relief, and the following week, she was not the same old mom, but I was not sure what was going on, and chalked up her sleeping through my visit as a onetime thing, But it wasn't. I normally call every evening, and on that new wing, they were not getting with the program to answer the dang phone, plus I did not have her room number or the new wing's "portable" number. When I finally got to speak to her, I KNEW for sure something was wrong. She was unintelligible, like she was drunk (she doesn't) and her mouth was full of tongue. I think I tried three times that Saturday, and no one answered. I then called Sunday and it rang and rang, but was picked up just before it disconnected. I was told they were trying to settle her down because PT, or a PT attempt, had stirred up pain. I called, and I think I know who it was, not by name. She told me what I believe is true: as a witness to all the people who were infected, "most did not do very well," and, "Many staff are unhappy with recent events and procedure changes and left," which I took to mean the residents died. Based on this conversation, which I understood to be I needed to act but not get her into trouble, I used as my signal to call a guy I know from a local message board that when my mother's time was up, he would squeeze in as many rides as he could for me until the end. Too bad the end is this week because, well, it is a holiday, and he is psyched about his son coming to visit, and I know he can only take me Tuesday, if she is still alive. I am angry that for a whole month, even before my mother was positive, I would have stepped up my visits then, when Mom was still herself. We could have reminisced, looked at photos, held hands. I was robbed of this valuable window. 

So, yes, my mother has Alzheimer's, I am very familiar with her course because I care for her at her home for a decade. The lying and coverup has already begun, when I heard that my mother's sudden change was "advanced dementia." I don't believe them and it does not sound like what I read on the Internet since. I believe it is their slipshod infection control, including two of the three times this week neither my temperature was checked nor my name put in the log book, and I am not reminding them. 

I did read that nursing homes claim immunity from the PREP act or law or whatever. However, I am not the only burned and disgruntled child that feels these people need to pay. Google Alerts brought me a story in Nevada, and a bunch a relatives are taking the nursing home on and have filed wrongful death, negligence lawsuits, which is the way around PREP. The article stated if no infection control measures were taken, it is negligence. Based on the article, I left my details with a local attorney with this specialty, including malpractice. I hope my case fits because I guesstimate at least six months of my mother's life was stolen from her, and a month from the both of us, to know Covid was going to cut that short, so we could try to shove as much love and memories into that shortened timeline as possible. That's what really bites and I am finally tearing up for first time over this with this last sentence. 

[fffred · Accepted solution]

@ChristinaC71503 

I am sorry for your loss. 

And I hope you can get some satisfaction with that hospital.

My mom died in a hospital at 89, some years back. She did not have dementia but had had some minor strokes (a term I don't remember at this late hour). I was so upset and disappointed in how they treated her. And how they treated my wife and I during that time. It was so unlike the nursing career that my own mother had worked through with responsible, caring professionals.

This was mentioned to the lawyer who helped us work through mom's will and all. He agreed that it was a nasty situation (mom had fallen out of bed due to the lack of supervision at the ward) but it was unlikely any lawsuit would result in anything at mom's age (at death). I did not care about money, I only wanted the hospital to own up to their mistakes. But that was all let go, and moved on. Sad to say.

I hope you can find comfort in remembering your mom and your life together.

Best wishes...

[Anonymous]

(1 comment) @ChristinaC71503 my thoughts are with you today! Nicole 🤗

[ChristinaC71503]

Thank you. The last week or so has been a morbid countdown replay of sorts.

I have more of a scab but sometimes something pierces it still. The latest was being pestered by TekCollect, first via email, then snail mail, in September, I believe. It had been quiet since I had sent out "Cease and Desist" letters in March. I pursued it, first with CFPB. and TekCollect backed down that same day. Genesis HealthCare, um, no. I was referred it to the FTC, and their Website referred such complaint types back to the the CFPB.  That's when I contacted my Representative, who is now a Senator-Elect, pointing out this ridiculous closed loop. I haven't heard back, other than it had been accepted for constituent assistance, and so long as it stays quiet, I will let it go.

The hassled of refusing to pay $220+ due from an insolvent estate is the price of being someone's FPOA. I know I am not paying it. it is not my debt. Genesis and their collectors have been incredibly unsuccessful in dinging my stellar credit. 

[SueS788527]

Christina, I am so sorry that you and your mother went through this traumatic experience at the end of her life.  Ironically, I had a similar experience with unnecessary pain and loss of quality of life for my husband.  Instead of Alzheimer’s disease, he was a cancer patient.  He took an alternative treatment which was supposed to extend his life.  There was no mention of the unexpected paralysis that ruined any chance of extended quality of life.  Instead of sharing our last days together, he was in a medical facility until the final few days when I got him home for hospice care.  The medical doctors and staff took no ownership of the situation and blamed his cancer for the paralysis, which proved to be untrue due to various tests taken at the hospital.  To date, there has been no acknowledgement of their role in this rapid decline and deterioration of his quality of life.

It has been over 7 months since his death, but those horrible days are still with me.  I know I need to bring closure to this, but it has been difficult to do so.  To make matters worse, I have been told that attorneys are not taking up these types of cases and that patients and their loved ones do not have much recourse.  It has been my greatest regret that as caregiver I could not have done more.  It has taken me many months to finally reconcile the tragic outcomes of the alternative treatment and understand it was not my fault and there was nothing more I could have done. By the way, I was continually not included in key medical discussions and decisions even though I was my husband’s authorized representative on medical issues, as per his will and advanced directive.

Stay strong and have faith that you did the best you could under very difficult circumstances.  It is extremely hard not to properly say goodbye, but I know in my heart, that my husband, like your mother, knew we were there for them and love them.  I am still grappling with the unfairness of this situation and am looking for productive ways to channel the anger.  I think writing your story is a good first step and awareness becomes a key to alert other people to the potential dangers.  This is a real human dilemma and unfortunately will continue as the population ages and the pandemic continues.  Good luck and remember you are not alone. Based on the many responses online, you have many soulmates in this tragic situation.  Sue

[ChristinaC71503]

Thank you, Sue!

Being cut out of the medical decision-making is just so wrong. I tried to get records, and that was turned into a conversation of how the PA would be compensated for her time! I had to fight to get a couple of downloads earlier on. When things took a turn for the worse, they knew time was on their side.

I know my mother died in pain. I have seen no accounting for the narcotic she was prescribed. Under Medicare Part D, it was only dispensed once, seven months prior to her death. It surely put into focus how she was comfortable on the medication at the hospital and uncomfortable at the nursing home. I wanted to see medication administration records. I regret I did not keep up with her Part D EOBs and, when she was in pain before, ask for the records months before her death, to see what she was being given. Not refilling that order was a red flag!

I am sure my mother does not blame me. We often disagreed when she was still at home that I did things for her that made being at home possible.  I chalked it up as a lack of insight from the Alzheimer's and a loss of independence. 

[clarachan]

yOU NEVER SAW SOMEONE DIE FROM aids;IT IS VERY HORRIBLE.tHEY LOSE WEIGHT,CAN'T BREATHE,and their taste-and smells go sway,.they get so thing,they can't sit down on the bones.--finally they lose their minds and then cannot breathe or think.One of my very  best friends git it,it was Hell.You should tell all your kids,"use condems!!"Its a painful disease.I don't know if Covid is the same in any way.They both stopped breathing,both of them.  oh and my caregiver just got huge new covid  even the vaccines doin't protect her..Her husband refuses to get vaccines  and she has covid.  probably thru him.  

[agoyer · Accepted solution]

@ChristinaC71503 I was talking with an eldercare mediator today and she mentioned that she mediates cases similar to yours, so I just wanted to make sure you are aware of mediation as an alternative to suing. She said often what happens is the family is able to get the facility to change, to improve their care for their residents, without the acrimonious court case. It's just another option - you will do what's best for you but I just wanted to make sure you are aware of it.

Take care,

Amy

[ChristinaC71503]

Hi Amy,

I left messages with two attorneys, and at two weeks, neither replied, so I am presuming they won't.  Apparently, no one has found a way around the PREP Act and corporations being able to run out the clock on litigation. I am not deleting my Google Alert on that just yet.

How does mediation start? I am unwilling to pay for some process where I do not at least break even. Has mediation done anything to change the most recalcitrant? The corporate owners have this bad history with COVID in Pennsylvania. One of the earliest stories in my area was of the nursing home they own near the university hospital. A woman who had long worked in downtown retail died because they kept a person with COVID in the same room. She caught COVID and died before there were any vaccines. That practice has not changed. My mother's roommate was not quarantined when she caught COVID, giving it to my mother. When it comes to bed space in a nursing home with a high percentage on Medicaid the almighty buck wins out over health. My mother was expendable. The Licensing and Protection people are paper tigers and they know that. I know it too as I have made many, many complaints, including ones related to my mother's death. In articles written in the year of this acquistion of 500 beds, it was written that as terrible as they are, the state would be hard-pressed turn down the offer because are they going to assume the care of these 500 people? No. Another corporation failed miserably, was not able to pay their food vendor, and meals were cut off abruptly. The state did step in to send trucks with food but beyond that it was storyline that was dropped. Not sexy or worthy enough for a follow-up. A homeless encampment that has been much downsized, been followed for weeks, again consumed several minutes as a top story tonight because eight people remain. Homeless people dropping home values, that's news!  Elders dropping like flies in nursing homes based on the community spread uptick? Well, they approached one, showed it, said the administrator would not speak, end of story. 

It really burned me when COVID was not listed as a cause of death. She was the same old mom in early- to mid-October. "Failure to thrive" was not the issue. She was eating until she reached the dying phase from COVID. No one notified me for this alleged worseing of kidney function, and I know form her Part D statement, the dosage of Lasix had not changed. The home and house doctor cared so little that the source of her kidney was wrong, her years of controlled hypertension wrong, the Alzheimer's dementia was made out to be something it wasn't. Basically, the death certificate stated she died from chronic conditions. Lies, lies, lies.  I did get to mention COVID in her obituary but not as a cause of death. If not for COVID, I would not have mentioned where she was living. Now, COVID and the name of this nursing home are linked, except with all their Facebook ads seeking workers, it is off page 1. The name of the facility plus COVID is on page one -- for now. 

I had hoped to get them on medical billing fraud but heard back Wednesday from the AG's office that Medicaid was not billed for the same bed days as Medicare was, and the switch was due to COVID. I am awaiting confirmation form the Senior Medicare Patrol on that one. 

The reporter also dropped from the radar this week.

Thanks,

Christina

[CarolB531074]

     My mother passed the day of your initial post; we mourn together at this time. We have some similarities that I wanted to share. I have short, instantaneous bouts of rage which move to sadness. But I have no one to be angry at. Mom passed as close to the way she wanted, as I can imagine—home with her family. This doesn’t mean it went smoothly—deaths are probably as difficult to orchestrate as weddings. Things will, and did, go wrong; I think it’s part of the definition. For instance, about a month B4 Mom passed, something was off. Her Dr. suspected a TIA (transient ischemic attack) and sent us to the emergency room for a brain scan. We waited 3 hours before leaving without being seen. My 91-year-old mother in a wheelchair did exercises in the waiting room with me to ward off boredom and probably looked too good to be seen right away. I blame the pandemic for short-staffing and for patients showing up appearing in worse condition than Mom, sending her repeatedly to the back of the line.

      Here’s another instance: Mom and I had the booster shot a week before her final stroke. By the time we got home from the clinic, Mom’s dementia spiked a hundredfold! Who was this woman?!  By the next day, she was back to baseline, as I endured a day of mild, flu-like symptoms. For the entire month before, Mom’s dementia was up and down, then gradually worsening in the last week. Was it the booster? We’ll never know. Would I now choose not to have gotten the booster? No, I know I made the best decision for Mom with the information available. A former RN, herself, I’m sure she would agree.

     And another: Four days before she died, she had a real stroke. The newly-involved home-care team, which had promised to tend to all her nursing, could not send a nurse on that very important day. ! (I think an administrator should have gotten out of their chair and come on over, but that’s water under the bridge.) But they were able to call 911 and get paramedics involved, causing us to scramble for her POLST information so she wouldn’t be hauled off to the hospital against her wishes and where family wouldn’t have been able to visit during her final days. Whew! It was a little dramatic, but, you know, bonus—it’s hard to be sad when you’re running around like a chicken with your head cut off. Again, I blame the pandemic for short staffing.

     And finally, the hospice intake nurse who arrived the next day, answered my very reasonable question about whether they had staffing to be responsive with my mother, with a near tirade concluding that we could find another hospice team if we wished, but it wouldn’t be any better. As before, I blame her stress level on the pandemic. (I do wish to say that actual care provided to my mother by the nurses, paramedics, and hospice team was terrific.)

     It is not my intention to tell you how, or how not, to proceed. Your mother’s battle with dementia at the end seemed similar to my mother’s, so maybe it’s not an unusual progression. I’ve also asked questions about the timing of vaccinations in the elderly. Covid is so new, I don’t think we’ll have information compiled for awhile.  

     I guess my opinion is that we do our best: We have more hits than misses, and we have to forgive ourselves for those. As for medical staff, they are working under tremendous stress and certainly have more misses during this time period than usual. Speaking for myself, I have to forgive those, too. This pandemic is taking more victims than just those afflicted. It’s not fair, but I can’t find anyone to blame.

     I’ve been involved in a couple lawsuits earlier in my life, and my experience is that no one wins. If I can dodge or adopt an attitude that satisfies me, I’ll do it. My suggestion is to take some time before signing on the bottom line. Put yourself 5 years in the future and look back: Do you regret putting your financial and energy resources toward an industry-wide problem? Or do you regret not taking on the machine and seeking justice? Change these questions as you see fit. Maybe there’s a middle ground in lobbying your local and state representatives. Sometimes being a loudmouth is the most effective. I wish you the best in your decisions.

[agoyer]

@CarolB531074 I just want to say thank you for sharing your story and I'm so very sorry for your loss. The things you so eloquently shared are happening all too often these days. Kudos to you for advocating for your mom the best that you could. Your mom was very lucky to have you. Sending much virtual comfort. Be gentle with yourself and take care.

Amy 

[CarolB531074]

Thank you so much. I appreciate it.

[agoyer]

@ChristinaC71503 I cannot imagine how frustrating and awful this must feel. I'm so sorry you and your mom are going through this. It's just awful. The staffing issue is critical and all of the other things you mentioned. It sounds like you might benefit from contacting the Long Term Care Ombudsman and explaining what is going on there and asking them to go and check on your mom and see what's happening at that facility. You can find your Long Term Care Ombudsman at this link - it's a list of LTC ombudsman for every state. I'd definitely call and report what is happening with your mother. 

Have they tested her for COVID again? I'm wondering about that...

It sounds like you have difficulty getting transportation there to see her. You might try calling the area agency on aging and ask about transportation options - you can find it by going to the Eldercare Locator at www.eldercare.acl.gov .

Again, I'm so sorry - I can imagine how powerless it must feel to be far away and not able to be with your mother and oversee her care after you cared for her yourself for so long. It breaks my heart for you. I hope you get some help from the LTC Ombudsman and that you can get there to see her - if that's allowed with the COVID. Please do be very careful if you do! 

Keep us posted...

And there is more info about nursing homes and COVID on AARP's Protect Nursing Home Residents section of the website. 

Sending you a warm virtual hug - which seems like so little in light of what you are facing - I wish I could do more! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[fffred · Accepted solution]

@ChristinaC71503 

I am sorry for your loss. 

And I hope you can get some satisfaction with that hospital.

My mom died in a hospital at 89, some years back. She did not have dementia but had had some minor strokes (a term I don't remember at this late hour). I was so upset and disappointed in how they treated her. And how they treated my wife and I during that time. It was so unlike the nursing career that my own mother had worked through with responsible, caring professionals.

This was mentioned to the lawyer who helped us work through mom's will and all. He agreed that it was a nasty situation (mom had fallen out of bed due to the lack of supervision at the ward) but it was unlikely any lawsuit would result in anything at mom's age (at death). I did not care about money, I only wanted the hospital to own up to their mistakes. But that was all let go, and moved on. Sad to say.

I hope you can find comfort in remembering your mom and your life together.

Best wishes...

[ChristinaC71503]

Thank you, Fred, for your caring reply.

I did read an update on the case against Genesis in Nevada. The legal strategy, on top of PREP, is to run out the clock, so when I read that, I knew for sure I will not receive an acknowledgment of wrong-doing legally. However, I heard today from both the Department of Aging, and they are doing an inspection, and part of it will be a review of whether nursing standards were met for documentation and administration of pain medications, and from the Senior Medicare Patrol's interest in those suspicious hospital charges within the facility to Medicare. I am glad my mother's account is still live today, and am not sure how much longer it will be. I took some screenshots of what I understood they wanted, and am awaiting another call to see where to e-mail that claim. There was a surprise after my mother passed that I feel is suspicious of they were lying to me they were treating her with the opioid tramadol. I was told it tramadol was it because her low kidney function, which is far from a new issue. On the outside, she received Vicodin, with the same, presumably, borderline kidney function values. I always felt it was weird that tramadol no longer worked and requested medical records several times in the weeks before her death as her health care proxy. They blew me off. I suspect they are lying and stopped giving her the tramadol. Upon review of her Part D activity, that was last filled in March. There are these nebulous pharmacy charges from the facility as either Part A or B. I am curious if tramadol came from there and whether it cost Medicare more to do it that way than through Part D.

I have three interested parties, and I hope something comes out of it: the Department of Aging for nursing standards related to airborne infection control and the monitoring and administration of pain medications and pain assessments; the Attorney General's Office for suspicious billling activity; and now the Senior Medicare Patrol, which is doing more than the AG "watching" my mother's account. I am sending screenshots as soon as I have an email for them, to investigate high charges to Medicare, including the semi-private room charge, which is a LTC Medicaid item, and I hope they can drill down in to the pharmacy charges as to why some meds did not go through Medicare Part D but through Part A or B.

I feel so disquieted that dispite my watchful eye, including prior receipt of records via private e-mail link, my faithfully showing up there weekly and calling almost daily, that my mother was in pain and was infected with COVID, with the facility relaying her shortened life expectancy in code, and I was deprived of perhaps 8 to 12 more visits, where we could have at least reminisced and held hands, the most body contact I could do with an N-95 mask and face shield PPE.

[JaneCares]

Hello, Christina. I am struck by several things as I read your post and went back to look at earlier posts dating back to August. I'll just share my thoughts and as they say in AA, take what you like and leave the rest.

One is, what a fierce, dedicated, and tenacious advocate you have been for your mother. Wow, she was a lucky woman to have you in her corner. Every long term care resident needs an advocate and too few have them: she had you. 

Another thought is, under so much of your anger is grief. Of course. You loved her so tenderly, you were so attentive to her. Despite her declining abilities, you were determined to make her days as meaningful and rich as possible. And you made a huge difference for her. Your loss is immense. I wonder if there is some sort of way to record your memories of her. You are putting so much energy into, essentially, punishing a woefully inadequate performance of health care. I hope your attorney guides you wisely and doesn't just take your money. How else could you use your energy to recall your mother, record precious memories, reflect on how her mothering, her essence, shaped you?  While memories are fresh, could you spend some time with your feelings?

My last thought this December morning is that I wish your knowledge could be used to help other family caregivers, since you have amassed such immense knowledge that is so needed by other families. Our long term care system is truly terrible: weirdly funded so that incentives are backwards, understaffed, under so much pressure, heavily regulated yet still terribly inadequate. I wonder how you could share your knowledge at some point in the future. Her death is so recent, your grief so fresh, and your frustration palpable, that it would be some considerable time from now before you could even cohere how to use your knowledge for others. I'd like to bottle it and hand it out to other caregivers as their loved ones enter a facility.

In any case, I do appreciate reading what you're struggling with, and my heart goes out to you.

For the record, I have been a family caregiver to my father who was in a nursing home for 7 years and had hospice care at his end. I am a medical social worker right now in a rural primary care setting and some of my clients are residents in the nursing home and assisted living facilities that are also owned by my employer, the only hospital in our county of only 8,000 souls. I was a geriatric care manager for several years, and helped families advocate for their loved ones, monitoring care. 

My hope for you is that you can grieve your loss, honor her memory in any way that feels right, pursue justice in a way that does not cost you too much money and in the ends helps the facility improve their processes for others. And that the Spring of 2022 brings you some joy and a feeling of new life and possibility as you face the world without your mother.

thank you so much for your candor and sharing.

Jane