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Unbreakable

Unbreakable
Location
Down the rabbit hole, Texas,
Birthday
December 06

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MAY 28, 2010 2:57PM

Taking Care of Mom - Part Two

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I have fooled myself, but not for long. Telling my mother's story is something I have avoided for a very long time. I was inspired to write the first part of Taking Care of Mom by something I read on OS that day, as is so often the case. A well-turned phrase sparks the muse within me. This is what happened the day I wrote part one of my mother's story.

Yesterday, I prepared to write the second part. I spoke with my sister for the better of the day, via phone, email and instant message. I gathered information on all the drugs Mom was taking when Kathy rescued her, taking her back to New Mexico with her. I read an extremely well-composed letter that Kathy had written to Mina about my mother's "care." I perused the list of drugs (over half a page long) that my mother was taking, all prescribed by the hospice doctors and provided by the hospice team. I researched each one so that I could write intelligibly about them. I listened with growing discomfort as Kathy describe the ridiculous, exaggerated nurse's notes in Mom's files.  I heard my sister's pain as she leafed through page after page of Mom's medical files, files which Kathy had demanded copies of and finally received, although in an altered state. 

As I prepared to write Part Two, I realized that it was going to be much harder than I had anticipated to tell this story. So much for fooling myself into thinking I was ready to write this.  A miasma of facts and emotions swirled in my mind as I attempted to form them into a cohesive whole. This story should be told, because it shouldn't have happened to my mother, and because it should never happen to anyone else. 

When Kathy got Mom back to her own home in New Mexico, it became increasingly obvious to her how much our mother had been overmedicating herself on the prescribed drugs that the hospice doctors were giving her. She had three separate prescriptions for morphine - two were for morphine pills, one that she took every night and one that she took once every twelve hours. The third prescription was for liquid morphine that she could take at will, which she did - usually 4 or more times daily. There were also prescriptions for various narcotic painkillers, Ritalin, and an anti-depressant with an extremely high prescribed dosage. She was also on an oxygen cannula which she wore 24 hours a day - except when she remembered to take it off to smoke. The oxygen level was set at a very high concentrated dose. 

Mom didn't have access to her liquid morphine (or any of her other drugs, for that matter) and that didn't set well with her. She kept telling Kathy, "I have a terminal disease, you know!" It was a rough couple of days for both of them. A few nights after arriving in New Mexico, Mom woke Kathy saying that she couldn't breathe. An ambulance was called and off they went to the hospital in Albuquerque with the list of medications in tow. The doctors were shocked at the amount of morphine Mom was taking and the decision was made to admit her to begin weaning her off the morphine, as well as to evaluate her overall medical condition. 

I sat in the room with my mother and Kathy a week or so later as a doctor explained to my mother that she was dying in the same sense that we are all dying, but that her death was, in no way, imminent. He told that she had many more productive years ahead of her. To my dismay, she didn't seem happy to hear that news. In fact, she argued with him that he couldn't possibly be correct because Mina had told her that she had a terminal disease. He carefully explained to her that COPD could ultimately be terminal, but that we all are destined to die of something. 

"What I am telling you," he carefully explained, "is that you can go on to live a long and happy life and you do not need this oxygen you've been on." He went on to tell her that her lungs were in a weakened state because of the high doses of oxygen she had been receiving and because of many of the medications she had been taking, but that it was simply a matter of time before her lungs would be strengthened again. He reminded her that she was already walking the length of the hall and back, without the aid of any oxygen. "You've made great progress already. We are going to get you weaned off this morphine and some of these other medications and put you on breathing medications to help you breathe better. You have many more years, Mrs. McVay." 

My sister and I returned home that night to her house and began going through the box of medical records that Kathy had demanded Mina mail to her. The records had obviously been altered and many pages were missing, but there was still a lot of information to be gleaned. There were many references to "the patient being unable to ambulate without the aid of a walker." Kathy and I stared at each other - our mother never used a walker. In fact, she didn't even own one. Up until the last few months, Mom was still driving and had made numerous trips to both Houston and New Mexico. This was the same woman who was "unable to ambulate without the aid of a walker"?

By the time I left to return to Houston, it was obvious that Mom's physical state was greatly improved. Her mental state, however, was another story altogether. Since she was hospitalized and under the care of competent doctors, we assumed that as her "detox" progressed, and her physical condition continued to improve, her mental state would improve. We were wrong. 

Whether from the withdrawal from the drugs or from the prolonged abuse of the drugs, Mom's fragile mental state shattered into a full-blown psychosis. She was convinced that my sister and I were trying to kill her. She claimed that a rapist was roaming the halls of the hospital and even climbed into the bed of another patient one night. She hid behind the door of her hospital room and attempted to conk a nurse over the head with a flower vase. She repeatedly called 911 from the phone in her room. Finally, she was moved to the psych ward. 

There, things went from bad to worse. Mom had a series of  panic attacks, which increased in severity until ultimately her throat swelled shut and she had to be intubated. Her mental state was such that we were never able to communicate with her again. She never came off the respirator. 

Do I think that hospice killed my mother? Yes, absolutely I do. They committed Medicare fraud using her unwittingly for years and when push came to shove, they increased her drugs to a level that would eventually kill her. Was she terminally ill? No, she was not. She was obviously psychologically disturbed, willing to trade her health for the "comfort" she was convinced she received from the nurses of the hospice. Obviously, not all hospice organizations are like this one. There are legitimate ones out there. Unfortunately, my mother found one that was willing to take advantage of her and she played right into their hands. 

I miss her. 

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This is unbelievably sad. I share a lot with you, UB. That's why my mom is in her own home, alone, but in the care of my sister and me alternatively. What is done to your mother is simply criminal. I am so sorry. I'm sending this to my sister to share with her, thank you for sharing your story with us - as painful as it is. R
Kim, I am speechless here. I'm heatbroken for all of you and angry. I sincerely hope it will help someone else, what you've written here with such clarity
oh this is hard - hard for you to have written - hard to read - hard to think about. thank you for being brave enough and strong enough to write it. i say prayers for decent care for old folks, and for their family who struggle through hard choices.
I don't really know what heatbroken is....but it is heartbroken that I am.
I miss her too. I know how hard this was for you to write, but you did so well with such gut wrenching material.
Fusun - It was more painful to share than I imagined it would be, but I am hopeful that the sharing of it will keep it from happening to others. No one deserves to have this kind of thing happen to them.

mLee - that is my hope, too. If even one person reads this and is alerted to what could happen, it will be worth the pain of writing it.

trilogy - thank you, tril. that is my prayer - that others will read it and take heed

dianaani - so do I. As my mother's story proves, it's too easy to trust blindly and the cost is unfathomable

unfindable - my dear, dear sister. you and I have lived through too many hard things. What would I do without you?
That's terrible.
To have your Mom or any mom used for profit is a vulgarity beyond my understanding.

I understand the hole of not getting to say goodbye.
This is absolutely appalling. It's hard enough to lose one's mother, but to have it happen this way is just so terrible and sad.
This is heart wrenching read. Having gone through something similar you may want to take a look at the Patient/Hospice Alliance. If you feel your Mom's passing was due to circumstances above and beyond natural death it may worth looking at. My heart is with you both...~r

http://www.hospicepatients.org/hospic30.html
I am so sorry that you, and your mother and sister, had to live through this. I hope that there was some legal recourse against the doctors and "caregivers" who abused her.
Jesus. I say that as half-prayer and half-cussing . . . such things ought not to be so. UB, thank you, though, for sharing the story. It's too easy, especially at a distance, for this type of abuse to occur, and knowing that it can happen can hopefully help us all prevent it.
Wow. I had not expected this. Did they get anything out of it other than years of Medicare payments? (ie did they rob her or con her too?) Were you able to sue the hospice and was anything done to shut them down? This is so scary for all of us with elderly parents geographically far away - we have no choice but to trust their doctors. I am so sorry for all of you. I will forward link to my brother ASAP.
@throughmyeyes - You are right Hospice/Patients Alliance is a really good reference point for people with concerns for their loved ones. I was in contact with them through the entire ordeal. They were in agreement with us that it was time to step in and try to help her, unfortunately it was a little too late.
Their site contains a ton of really great information.
I used to see a lot more of this stuff when I worked in Miami Beach, the people who lived in the hotels of South Beach, before it was South Beach were walking targets for snake oil salesmen pawning themselves off as 'doctors', and giving hijacked samples of medication to unsuspecting and lonely older folk, while collecting signatures and medicare money - they were rightfully dubbed 'medicare mills'. It's much harder to get away with something as blatant as this nowadays, but in some places it still goes on in spite of the tougher regulation and enforcement. I was a little confused by the statement, "Mom had a series of panic attacks, which increased in severity until ultimately her throat swelled shut and she had to be intubated". I've had to intubate many patients over the years, but never due to a panic attack. Perhaps she had a bronchospasm brought on by agitation, but this is quickly and easily relieved in a medical setting ... I hope you've had her records reviewed within the time frame required to assert medical malpractice in your state. Something stinks in Denmark. I'd be very interested in reading your post on 'another story for another day', about her living on her own in Texas so far from family. You are completely on the money when you relay the loneliness people feel as they grow older and are not part of a busy family life anymore. Your Part One was an essential piece of this story, and it sounds like you understood her compulsion to look to medical settings for 'care'. I see more and more of this as families grow apart, children grow up, people move away ... why are we surprised to find we are alone? This is a hard story.
Oh this is so sad. And infuriating! Your mom needed so much and probably never believed anyone could give it to her. I am so sad for you all. I hope writing it helped...
oh, I am so sorry. I, too, hope this was in some way cathartic for you. It will surely help others avoid the same fate.
this is really horrid. I think a similar thing happened to my grandmother but it was a doctor who made her dependent on him (over 30 meds) and she trusted him more than anyone else.
Unbreakable..how horrid. We as humans, just feel those in medical authority know what's good for us..we trust way beyond what we should..how were you supposed to have any clue this was happening? I feel for you. Your Mom had other problems that you eventually found out she neede addressed, you did the right thing, caz that drug regime would have killed her quick. Sorry this happened to you and your sister.
Good God Almighty! What anguish you must have endured. I can hardly believe all of this except that it is you and I absolutely believe you. Dear Unbreakable, may your words reach the ears of all who might one day face anything like all of this as the patient or as the child of the patient. I ache for you and I send my love. You are a brave soul to have written this.
an awful story, un/b, and it didn't help that i expected a bad turn after reading part 1. i've had some extremely unpleasant experiences with older family members and some for-profit organizations that provide home health care, but *never* from the hospice people in any city. i'm shocked that this mina woman worked for a hospice provider and did this, really shocked. and so sorry for you and your sister.
You wrote`...
`I miss her.
Beautiful...
`
Politicos may be a morbidly obese if Gulf Oil Pro OIL-THUGS.
O, my day.
Crooks do two-push-ups?
Jump-in-jacks. Play golf?
Ay, MESH-MESS T-shirt!
Eat scoops of ice-creams?
GOPS buy OIL Golf Balls!
`
The news is the strangest!
I never ever ever did sees!
No watch NSA PORN huh!
`
Flea? Flight? Bumble Bees!
Nicolai Rimsky hum Violin!
O buy the Yellow Hummer!
`
Hear `Korsakov or Rossini.
(sp?)`Enrich each other too.
Nourish the inner Being. Ah!
On Memorial Day get wasted?
NO! Get sweet foot manicure!
annoy .. (!).. no be too clumsy!
goofy.
go jump rope with no robes on.
Unbreakable. I see compassion.
I wish I could paint belly button.
My toe and fingernails need love.
This is way-silly and no break toe.
I broke toe and fingernail one day.
But, you experienced your ordeals.

If you fix auto or tractors? Call Ya!
Ya best just sense I am amazed. Ay!
Who know what to say?`Love You!
I hope this ain't a confused a-`flirt?
We all seem to have different `pain.
Thanks for sharing. I realize a `hurt.
But, there's much virtue and passion.
At points in your story, you could have been my sister telling it. Our hospice was good, but the abuse by our mom of her pills was something my sister had to work hard at to fix. I threw drawers of pills away when my sister took our mom out for the day.
I am glad you could finally tell your mom's story..
And an EP good for you!
so incredibly sad and infuriating. So well written, i hope releasing the story to the world helps you in some small way. at least you have reminded us all that we must take care of our parents when they are unable to advocate for themselves. I am glad she had you and your sister to lean on.
This was quite a two-part story. My stomach is churning. The flip way most doctors pass out meds causes many health problems. It appears that your poor Mom was able physically to get off these powerful agents but psychologically unable to adjust to not having them. This makes me wish for a hell, for those who did this to your family. I am so sad for you for what you all lost.
@GabbyAbby – Medicare Mills is a good description, and it can be very profitable business.
Our mom was dealing with several issues, the panic attacks were just part of it. When I “kidnapped” her she was already suffering from a drug induced psychosis, and dementia, and severe anxiety and panic attacks. She also had a condition that she called Barrett’s Esophagus (I don’t know if that is really what it was) but she would have “spells” where her throat would suddenly start to swell shut. It had happened most of her adult life, we usually gave her a shot of whiskey and calmed her down and she would be ok. This time nothing was helping. The hospital called me and asked me to get there as soon as I could, but their efforts to resolve this were not helping. By the time I got to the hospital she had already been intubated, and unfortunately she was not able to come off the life support.
It is also unfortunate that there is a cap on medical malpractice in Texas. I spoke with several attorneys who told me that if this had happened in New Mexico any number of attorneys would have taken the case, but in Texas, to take a case against such a large corporate entity there would not be enough money in it.
It is a hard story, and so sad..
I am so sorry, my father-in-law had hospice care before we lost him to cancer and it was a totally different experience. I am truly sorry this happened to your family.
Two Thumbs - thank you for your kind understanding.

Jeanette - you're right - it does seem to be the cruelest blow

TME - thank you - be sure to read my sister's (Unfindable) response to your comment...

sixtycandles - unfortunately, no, there hasn't been. Malpractice laws in Texas make a lawsuit impractical, at best. I even appealed to the Texas State Attorney General - no response.

Owl - I have a lot of guilt about what happened to my mother. My sister keeps reminding me that we acted as soon as we realized something was amiss, but...

Blue in TX - no, they were satisfied with the years of Medicare fraud. Anything else would have been too obvious. Texas is not a state where one can find much recourse if something like this occurs. The hospice that my mother was involved with is a national organization and was indeed involved in a whistle-blowing incident recently. They were fined heavily and some people lost their jobs, but as far as we know the particular hospice branch that defrauded my mother and Medicare is continuing to operate even now. I gave all the information I had to the Attorney General, but never even received a response from them.

K - I'm so happy you are answering comments in this thread. There is so much of what happened that is still a fog to me. (For those of you who don't know - Unfindable is my sister)

Abby - I won't add anything to my sister's response to your comment. There is nothing I could say that would add anything of worth to her comments. She's my hero and if anyone could have saved my mom, it would have been my sister.

mypsyche - I think it helped. I've finally written about it after all this time - that has to be progress, right? :-)

ConnieMack - if it helps others, that will help me...

Mimetalker - I understand. My mom trusted the medical community above all else. :-(

Cindy - thank you for your kind words.

annaliese - it is a hard story to swallow, isn't it? thank you for your compassionate words.

femme - thank you. Hospice is an organization we never expected this from, either.

Art - I am so touched by your gentle words. Thank you so much. The kindness of friends is a soothing balm to the pain writing this has caused. Thank you, gentle soul.

Seer - As a society we are, I'm afraid, hanging onto our humanity only by the thinnest of shreds.. You've spoken a great truth...

LL2 - thank you. I know this must have been hard for you to read with the memories of your mother so fresh.

irish colleen - I think it has helped me to tell the story. People need to know that these kinds of things happen...

Spud - I share your wish for a special kind of hell for the people who abused my mother so badly. Thank you for your comments.

Blu Speck - my step-mother had hospice care in her final days and it was a good experience. (This was in Florida and a different organization) They were wonderful caring people. There are good ones out there. Hopefully more good than bad.
Damn....a very hard story, UB. I am so sorry!!!
Touching. Beautiful. Real.

After all these years, I still miss my mother as well.

Thank you!
As everyone else has already said, this is indeed a horrible story. And I know it must sear your soul to know you weren't there early enough to stop the abuse. But--you were there when you knew something wasn't right. That's all you could have done. You stayed there until the end, even though it had to be terribly difficult to see her intubated like that. Obviously we all wish it could have been different. But you're doing a brave thing by telling your story in the hope that it may help someone else. That's one of the best things you can do. The other best thing? Forgive yourself. You loved her as well and as completely as you could, as she could let you. In the end, that's all anyone can do for someone else. Rated. D
I know first hand the toll to the body and the mind that coming off morphine causes and I can't even imagine being on three different morphine doses and then coming off them.

Yes. It was murder, pure and simple. Something else I can't imagine and that is the courage it took for you to write this and for you and your sister to have to relive it all over again. My hat is off to you, dear friend.
Rated with great sorrow.
oh dear friend. I am so very sorry. Endings are always hard regardless of our relationship. but this. this! no. there is no justification for this.
Truly unbelievable. I am sorry.
I can only imagine how difficult this was and is. My heartfelt sympathy to both you and your sister. I am positive others will benefit from the telling of your story though. Well done. Lots of love.
I wish we could coordinate psych evaluations and treatment with physical healing so that the sucking gap between the both would not have been so apparent in your Mom's case. Thank you for writing this, I know it was distressing. But I now stand forewarned with two elderly parents who may need such care in the future. You've done me a great favor.
Kim, OMG! I am so sorry that your Mum, you and your sister endured this horror story. This terror makes Stephen King's MISERY read like a nursery rhyme. I have seen psychosis once in someone I loved - and it was the most scary thing I've ever seen.

To bad this Mina and her minions couldn't be committed and imprisoned. This must have been very hard to write.
JD - yes, a very hard story. Thank you for reading it. I appreciate you.

Nick of the new avatar - yep it was. thank you. xo

RA - It never goes away, does it? I miss her so much, this morning especially...

Yarn Over - your words touched my heart. Through tears, I say a great big thank you. I needed to hear those words and I know my sister did, too.
We tell each other those things, but it helps to hear it from someone else. Thank you.

David - I'm just now beginning to grieve her. There was so much going on when she died - daddy's death, the horrible probate fight, what happened to my brother - that I was kind of in another world and it feels like I walked through the experience of her death in a fog. So, writing about it has brought up all of those feelings I didn't really have a place for back then - anger, grief, disbelief. A therapist told me a few years back that I would get to this point, but I thought she was crazy - that I had already dealt with it. Turns out she knew her stuff. Thank you for your compassion, dear friend.

jimmymac - thank you. xo

Lady Dove - no, no justification at all. It still seems impossible that it all happened.

sophie - thank you, dear friend

Little Kate - that is my sincerest hope. Thank you, Kate. xo

Linnnn - thank you for telling me that. I needed to hear it. You're a dear. xoxo

Scarlett - it was much harder to write than I imagined it would be. I was very naive about the effect it would have on me. Thank you for your kind words. xo
This was so brave to write.
R.
you were damned when you helped her and would have been damned if you didn't. she was your mother...what else could you do? sit by and wait for her to overdose? and as for those vultures in Texas, is there nothing that can be done in terms of shutting them down, if not prosecuting?

kim, this is a sad story and I'm so sorry you and your sister share this burden. whenever something bad happens to our parents, we can't help but take it on. it's our better selves wanting, wishing we could have done more. you did good. you DID something, you tried to make her life better. I'm sorry at how it ended. but the sad ending was inevitable. she had set this thing in motion years long before you stepped into the picture...
It took a lot of courage to write this, and I hope it helped you in some ways to unburden some of this information. You did what you had to do. It was a sad ending, but it is hard to imagine a happy one given your mother's mental state, even before she was weaned from the abusive hospice care. You wrote it very well.

While the hospice is responsible to the state and the state has done essentially nothing, the buck finally stops with Medicare. Under the new law I would think it would be worthwhile to document and report all this to the Federal agency.

Monte
Kim, this is heartbreaking and infuriating. I'm wondering if you and your sister have looked into filing a complaint with the state or with Medicare, or talked with a lawyer about bringing a lawsuit.

As Torman said, this was murder, but the burden of proof would be almost impossible without something more than circumstantial evidence. I wonder if there are records of complaints against this hospice that would show a pattern of abuse similar to that of your mother. A good investigative reporter - if there are any left - could dig into this and expose them. Sometimes that's what it takes before the regulatory machinery will do anything.

I admire your courage in telling this story, as it is obvious how difficult it must have been.
Heartbreaking, and an object lesson to all who are taken advantage of just when they are most vulnerable. Those who face serious medical issues and hospice must be vigilant. While I am so sorry for your pain and loss, I hope you take some comfort knowing your story may help keep others from suffering the same.
I wish this didn't happen to your family. When my father was in hospice, we thanked God every day they were there. The kindness and care they showed helped so much. I'm sorry that this happened to your mother, I truly am.
i'm so, so sorry. this is a tragedy that nobody should have to go through. it sickens me to think that people in the medical establishment would abuse their power to such a degree. thank you for sharing this with us.
Oh my God, Kim. I'm so very sorry. _r
Unfortunately there will always be those willing to take advantage of those who are weaker then themselves. I hope you can move on from this.