Sorry one and all. By now I should be used to almost everything. Hanging out here for almost 3 years and being in charge of my mother's care for 7 and involved in my fathers care 2 years before that...After 9 intense years, I should have heard it all.

2 months ago, the new doctor at the office where I have been taking Mom saw her for the first time when I took Mom because she seemed to have gotten very weak in her right leg. There had not been STROKE signs. Her hands were strong, facial responses good, I still thought she had been having TIAs . Word salad at times, occasional swallowing problems.. Doc said no, ordered PT from Home Health. After a week, we started to battle a small pressure sore on her coccyx area. The dura derm patch the HH nurses applied, seems to have trapped a lot of moisture and NOW she might have some yeast so NO MORE dura derm, AIR, AIR,,,,Like yeah, my 94 year old Mom, 95 in Dec, is going to lie on her tummy and expose her bare A## .....
OK, THAT is not really the problem. AS my mother has declined over the last few months, continuing weight loss, increased pain and mobility issues, swallowing difficulties,,,,I have discussed this with the nurses who have come and for the most part I had already implemented the suggeestions they made. I found protein supplements that could go in most things, started pureeing all foods, offering several small portions of possibles and providing more if she was actually consuming a particular something. Lots of snacks, pudding, jello, ice cream....

The nurses actually are the ones who brought up Hospice. I had thought a Doctor needed to diagnose a person with a terminal illness but approached hospice any way. NO, NO, they said. If you can document decline, we can admit her. OK..

My objective is to honor my mother's wishes. She is afraid if she goes to the hopital , that is where she will die and that is the last thing she wants. She is very capable of saying NO (and if she does it is kidnapping to transport her against her will in every state I know of).

OK, I can document decline, I have 7 years of notes documenting eating habits, doctors visits, weight gain and loss, BMs, meds, yadayada, so I approach Hospice. They get the abbreviated version from the PCP who has seen Mom once, talk to a super at HH that has NEVER seen Mother and say, Nope, doesn't fit criteria.

HUH, So the nurses who have seen Mom talk to the super and say WTF?? So super calls another Hospice that is more proactive. All they want from Mom's PCP is a order to ALLOW them to visit Mom to evaluate and admit IF appropriate... The dang Witch of a Gate Keeper at the PCP office Goes OH NO, she could lose her liscense if she allows that!!!!

WTF...I push a bit and she says "well, your Mother only lost one pound between when she saw the last doctor in March and when she came here in Aug." !! WHAT !!! WRONG!!! When I took Mom in Aug. They did NOT weigh her. They saw her in her wheel chair and asked if I thought they could, I asked "What do you think?" So they asked what do you think she weighs? and I said, I don't know, she weighed about 115 last time but she has lost right much since then... THEY wrote down 115 as her current weight. So by their records she lost only one # in 5 months. Thus NO decline.

I will have to talk the poor woman into making a trip to the ER soon so that she can stay home. In order to prevent her from being dragged around, put through the mill and poked and prodded, I am going to have to drag her around, put her trough the mill and be poked and prodded...MOSTLY because some STUPID B#T#H, wrote down a totally bogus weight in Mom's chart.

Your's Truly,,, Spitting Nails IE., the daughter of a trick circus pony about ready to jump through flaming hoops, OR NOT. Up to her, but, I think she is going to have to be the one to tell the EMTs NO.

Yours Truly, MS Spitting Nails.

PS, What do we have in the bail fund at the moment?

This message has been edited. Last edited by: Bobcat,

quote:

Get a scale, BC. Weigh a dry Depends, tare the scale, then weigh the used one. This gives you an idea of the weight of the urine. You will have to find a value that can be used to convert the weight to a volume (CCs) measurement.

I havent had to do this for a minute but a plastic measuring cup is about the same weight as the dry depends.
I then weigh the depends then take the MC and add water in it (while its on the scale) till I have the same weight as the depends then convert the measurement to CC's

8oz = 240cc

Sorry to be so slow with an update. Mom is home... enrolled in hospice.

The hospital experience is one that I really hope Mom never goes through again. WBC count was way up when we went to the ER, but the only source they identified was a sinus infection. I point out AGAIN that her pessary is overdue for cleaning and that is another possible source of infection. eSo they attack a fly with a sledge hammer,,levoquin.. THEN they come back and say sometimes c-diff follows this so we are going to start Flagyl. WAIT.. Please do a fecal first.. OK. so I leave, they send a stool sample to the lab and give her the Flagyl (no results yet) So then Mom starts getting confused, grumpy, total change and starts to hurt in the abdomen. They say she must be contipated, (that would explain the huge BM she had 2 hours before.) and they want to give her sorbital(?).

How on earth does anyone survive being in the hospital without an advocate???? Mom's pharmacist gave me (free) some great probiotics to mix in her applesauce while she finishes up the levoquin and amoxicillon they sent her home with. I guess the hospital won't make enough profit off of probiotics so they want to prevent c-diff (whether it is present or not) by using flagyl.

Please, this is not the place for links about c-diff. I am just glad she is home. Pessary is removed, her weight is documented at 97#,,,

There were some really funny things that happened I will share later, and talk about a few things I learned, but I am not angry now and hopefully, this is the last yellow type episode for me.

This message has been edited. Last edited by: Bobcat,

Hope you're getting some much-needed downtime tonight, BC. So sorry to hear of your mom's nosedive... I can sooo relate to the complexity of the situation and its effect on you. Do what you can, dear, and make a peace with the rest. Please remember to breathe and know that even though you are the one who has to be strong and juggle everything, this is also hitting you square in the chops as well, so be KIND to yourself, please. Anything you can throw off your shoulders to someone else, give it the heave ho! Know you're in my thoughts & prayers! {{{{{HUGS}}}}}

Thanks again, I really appreciate it. Onlycarol, it means a lot to hear from you. Maybe if this all gets hashed out here and now, we can iron out some of the kinks. Mom went to the ER yesterday afternoon, based on signs of dehydration, and some confusion and "haziness". We really tried to keep her hydrated, but just couldn't get it in her adequately.

AND they kept her, not a big surprise to me. What did surprise me was her white cell count was 3x elevated. Strange, it didn't show as a UTI. Seems like sinus was their best guess. Oookay. A lot of issues are being addressed including a hospice evaluation. We are keeping up her own caregivers with her. So I am able to get back home tonight.

I am getting a shower in a few minutes so I can be ready to go early in the AM. Momis mildly upset at me, but I think she feels better with 2 bags of fluid. Speech therapist saw her and really said she thought we were mostly doing the right things, did make a few suggestion that sound worth while. Wound care specialist will address the concerns we have about the pressure sore before she is released. Hospice is evaluating her before she is released. Alot is happening and I will let you know when I know.

For now, I need some rest.

Oh BC, I am so sorry about these horrible experiences of yours that I am sitting here crying and typing. This has really shook me up, as I realize that it could be me in a few days, months, or years. The only difference is that my mother is still mobile with assistance. I don't like to think that I will have to fight someone for her to have hospice, if that is needed. Why are the insurance companies so determined not to serve their paying customers? Also, I have been doing this for fifteen years in December, but it has only been really hard since 2004 when my boyfriend was killed in a bank robbery (he was a security guard, not a bank robber), so I can relate to the grinding of the years on a person's psyche. It is OK to have those feelings of anger and frustration. I guess it will lead to incineration if you don't allow yourself to get out of crisis mode. A hospice nurse would help you SOOO much. I will pray for a resolution to your mother's situation amd your suffering. By praying for you, I can help heal myself, God bless you and keep you strong.

quote:

how do you when they wear depends

Get a scale, BC. Weigh a dry Depends, tare the scale, then weigh the used one. This gives you an idea of the weight of the urine. You will have to find a value that can be used to convert the weight to a volume (CCs) measurement.

Good luck! Ya can't stay in "crisis mode" for an extended period of time or you will not only "burn out," you'll incinerate! Try to have some "we're just goin' along..." time. I spent a LOT of energy watching, suspecting, preparing and then when nothing transpires, all that energy expended creates a deficit in what I needed to go through the "average" days...

Hang in there! And do something for YOURSELF this week, willya? {{{HUGS}}}

OK, one more remark....I feel like I am the disaster preparedness mode. I have a bag packed with a brand new magazine, packaged snacks, etc. referring to

http://eldercare.infopop.cc/ev...6016051/m/8671039485

also, I never miss a chance to do the dishes, get the laundry done, haul the trash, or take a shower, fill the gas tank, very much as I would If I thought a viscious storm was coming or I lived on the fault line.

http://eldercare.infopop.cc/ev...6016051/m/3911039074

Just for reference.

Oh, Oh, and clean the litter box and make sure the feeder and waterer are fresh and full.

Well, MB, you have described the situation fairly well. "Being Herded" is sounding nauseously familiar. The new PCP's license may not be at stake, but her job might be. And who knows, that might actually mean her license in this case.

Thanks for the support, TORP, Mom and I am going to need all we can get. The new system actually probably won't have this PCP see Mom at the hospital, certainly not in the ER. They make grreat use of the hospitalist now, that stands in for many of the PCPs at the hospital. I believe this is why the HH nurses recommended a trip to the ER and particularly so if it came to be mid day, mid week, when a particular case worker was likely to be on duty. She may even see her former PCP, who now works in that capacity.

From the looks of things yesterday, there might be a real reason sometime this week. Who knows? Mom had a head ache yesterday, not too bad, but then she doesn't complain much. We have not had too measure her fluid in take and out put, (how do you when they wear depends) But we are all so used to her that we just sort of "feel" it when she is off. She just hasn't been "normally wet" the past 2 days. She does pass urine and it is not strong or dark, just not the volume I expect. She is not showing any signs of edema and her breathing is normal, everyone says they think her intake has been about the same, so, we are keeping a very close watch on her urine. It may mean nothing at all, just an over active imagination on my part.

I will try to stay off the anger wall fora while. My eruption seems to be about over. Time to get back to getting things done. Maybe this will serve to alert others of what might be happening around them. If I figure out how to handle it, I will up date everyone. I'll keep you informed regardless. Thank you all my friends, I can see better now that the red haze is staring to fade. Maybe someone will pop up and say "trick or treat" and everything will be hunky dory.

TORP, I think you misunderstood my remarks. The issue under discussion is that roadblocks are being thrown in BC's way while trying to obtain home hospice care for her mom... I KNOW what home hospice care is all about (there are also residential hospices, though not all hospices are associated with a "hospice house"). Different hospice organizations have different rules - there is no "one size fits all." It depends on what Medicare allows, state laws, what is available in your area, the individual hospice agency and whether the PCP works with hospices & home health agencies or not. It all starts with the doctor writing orders to change care from the PCP/home health to a hospice organization and their staff doctor. BC's mom's doc won't even write orders for Hospice to evaluate her mom for possible admission to hospice care! ...Which sounds like total bullshit to me - the patient or patient's representative doesn't need the PCP's "permission" to allow evaluation by ANYdamnbody! She could have an evauation by a WITCHDOCTOR and the PCP's permission is NOT required! HOWEVER, since the PCP in BC's mom's situation is refusing to cooperate, the only solution is to fire the doctor and get one who WILL give the permission the HOSPICE is seeking to do their evaluation. Changing physicians for homebound patients is a NIGHTMARE!!! I TRIED, but every physician I contacted said Mom would have to come to THEIR office for an examination - they would not see her in the hospital or ER unless she was an established patient, which meant coming to their office for an examination. Catch 22.

Some community's physicians work well with Hospice agencies; others see them as competitors and will not refer patients at all or until they have only a day or so to live!! Many doctors don't even work well with home health because that, too, impacts the PCP's bottom line! Sometimes, physicians do not feel confident in their community's home health agencies & hospices because some places have really BAD agencies that physicians refuse to use!!! Many physicians honestly do not feel comfortable with using home health nurses as their "eyes and ears" - they want to see the patient themselves. When a doctor is part of a larger medical care corporation (like we have here), the hospital system to which they belong pressures the docs to do things a certain way to direct patients to THEIR system (and not to others) for monetary reasons.

If BC's mom goes to the ER, she is STILL under the care of the PCP & home health unless she is admitted. THEN care is transferred from the PCP & home health to the PCP and hospital unless the PCP is "fired" and they choose to use the hospitalist as their PCP.

quote:

If mom is declining and home health is documenting it, medicare isn't going to let her keep it much longer. That's the law!

With all due respect, you are mistaken. My own mother was declining for years with HH documenting and her doc would not order hospice when I requested it. Mom died 3 months after that request... no worse on the day of her death than 6 months before... One can have home health until the patient dies - hospice is NOT required by medicare law; nor is home health, for that matter. The only time limit guidelines of which I am aware is that Medicare looks hard at hospice care when the patient lives longer than 6 months from the time services are begun. They HAVE become more lenient, however, because some folks do not decline at an even pace or "on schedule."

This message has been edited. Last edited by: Moms_Buddy,

Hospice isn't about institutionalizing them. Where did you get that idea, MB? It's about helping them to remain AT HOME, covers more of the equipment and all of the medications relating to her admitting diagnosis, and will send a specially trained RN out and even a doctor periodically so that mom won't have unnecessary trips to the hospital. Most of them will send sitters so that the home caregiver can go out. They also usually provide a certain number of days of free respite care in their "hospice house" if the caregiver is sick or just needs a little break for a couple of days.

There are chaplains and social workers to help the patient AND the family.

If mom is declining and home health is documenting it, medicare isn't going to let her keep it much longer. That's the law!

After chewing on all this, I think you are being "herded." That weight thing, for example, is totally bogus. There are Hoyers which have modifications to weigh folks while they are suspended in the sling - ANY home health agency should know about this and how to use them...

This whole deal is part of the "push" to institutionalize folks whose needs have become more than the average person wants to handle. And if the needs are NOT more than a caregiver can handle, they'll make damned sure to throw roadblocks in the way to cause the care to be difficult! For those who DO want to remain at home for their care until they depart from this life, a FAR less costly alternative BTW, the system pushes from all directions to funnel people into the institutional care system where the last of their money can be wrung from them and their health care benefits (Medicare, etc.). It's disgusting and one reason WHY caring for elderly people has become so expensive... It's all about M O N E Y and how corporate health care can feeeeeed at the Medicare trough.

What a mess. I'm so sorry you're having to deal with idiots and bureaucrats in addition to everything else.

Could you transport mom to the doctor's office in a wheelchair accessible taxi? Then let nurse know-it-all and doctor dingbat figure out how to weigh her, etc.

MB, That makes 2 of us who don't understand, but let me try to clarify a few things. The wonderful PCP with the geriatric subspecialty that Mom used to have recently sold her private practice to the medical group that bought out the local hospital a few years back. Amoung the reasons was that most of her patients were medicare patients. She really could not afford to stay in practice as costs rose and payments were cut. Yes she could bill the patient for the part (20%) medicare no longer paid, but that increased her billing costs, delayed payment and many patients could not pay the difference. That's where medicare gets its small share of my rant.

I don't dispute your statements about health insurance companies and the for-profit corporations, especially the latter. The for-profit medical group that bought the practice is also a target.

The new doctor that was assigned to the "clinic" has seen Mom once, back in August. I took her in because of extreme weakness in her right leg, continued weight loss, and her arthritis pain, and new symptom of difficulty swallowing. She said she was certain it wasn't a stroke and ordered 6 weeks PT from home health, said to give her tylenol, wrote down Mom's weight as 1 # less than it was in March after asking me what I thought she weighed ( I said I didn't know as I couldn't stand her on scales at home but she had lost quite a bit since last time,,,she did not try to get Mom out of her wheel chair and onto scales at the office). It appears that part of her assignment may be to deny services every possible chance she gets.

Before PT was over, Mom stopped cooperating saying that it hurt and she was too tired So Mom did not get 1 week of the PT). Plus she started showing the first signs of a pressure sore. So PT quit and HH got permission to send a nurse to check her out. Nurse came, put a dura derm patch on her, said leave it on, suggested a no rinse pereneal cleanser and told us to keep doing what we had already begun doing,.. see ya next week (would actually be 4 days). The PT advised I find a doctor that does house calls and gives me 2 numbers because in his opinion it is not safe and probably extremely painful for her to leave home unless using medical transport which will not be covered by any insurence. He gently advised that we not try to transport her ourselves anymore.



Well, a different nurse comes back, replaces the patch, documents what we have said before about the swallowing problems, both times the nurse who came has seen Mom on her feet because Mom was in her recliner and had to be moved to the bed for treatment. Next nurse to come thinks there are signs of a yeast infection under the patch, so we wouldn't do that anymore... next nurse shakes her head as we move Mom and remarks that she sees what the other nurse meant about it being amazing that we can get Mom out of bed at all, and dittos the PT's wise words (so I think maybe that remark about transport must be in Mom's record, maybe they just talk shop). Even so, the sore is better "Good job", she says, "so we are cutting back to once a week, 2 more trips and we are cut off. Her PCP won't order anymore, If you have new symptoms call us, we can try to get her to order us back".

In the mean time I have called the numbers given, neither doc is accepting new patients. Well actually I don't know about one of them, his number had been disconnected. I thought I found a third, but it turned out that it was the first one, just under hisbusiness name in the phone book. Since, I have tried on line to locate one, and none cover anywhere close to here.

Next one comes in says, "have you talked to hospice?" "Can we?" "Sure, her rapid decline is cause." The first hospice won't come see her, because there aren't doctors records showing decline and they aren't going by the nurses. Home health supervisor talks to nurses and calls another hospice and refers Mom. They are willing to come see her but need permission from her doctor to do an "evaluation to admit if appropriate" and her pcp refuses. REFUSES. Thinks her license is at risk, can't do it unless I drag Mom in there and SHE documents the decline herself in her office.

I have tried to find Mom a new PCP in the area BUT, since Mom has a doctor and is a medicare patient, they all say she should stay where she is, because they aren't taking new (medicare) patients that already have a doctor in the area. Off the record, 2 of the nurses have recommended that I take Mom to the ER the next time she gags or chokes. The one visiting physician that I did talk to also recommended that course of action. Mom is afraid (and it isn't an unreasonable fear at 95)that if she goes to the hospital she will not come home. I can't promise that she will, but the less serious the matter, the more likely she will not be admitted.

Mom is old, nearly blind, and very arthritic, she is losing weight, having swallowing issues, but she knows who she is, where she is, and what she wants. I don't know about your state, but if she is conscious, in ths state, that is enough for her to refuse to be transported to or treated at the hospital. To load her up and take her against her will is kidnapping and it should be.

I don't KNOW if Mom is appropriate for hospice at this time, I believe she is. But I do know that there is a hospice willing to evaluate her and her PCP is stonewalling. I do know that the PCP tries to keep all home health to an absolute minimum, and I do know, that if Mom is appropriate for hospice, she won't have to worry about leaving her home in a crisis. She will be assured that if one of her CGs thinks Mom is in distress, they will call hospice and not 911. Hospice can protect her express wishes about end of life far better than home health can. It is very different.

So, here in the ANGER WALL, I have sent out invitations to a tea party, I suppose. No one needs to accept it. If you don't understand, that's reasonable, because there is a whole lot I don't understand either. This is beyond Daily Challenges or I Caregiver where I have discussed some of the issues leading up to this tempest.

This message has been edited. Last edited by: Bobcat,

quote:

Thank you very much to Medicare cutbacks, MEDICARE,,,,that well run government hallmark of successful health care. I am sooooo looking forward to more of the same outstanding health care for the rest of MY LIFE.....OOHH YES< I AM VERY MUCH LOOKING FORWARD TO THAT!!!!!!

Don't blame the government for cutting - blame the health insurance companies and for-profit corporations for soaking up the money to pay their CEOs, stockholders and bonuses! Health insurance contributes NOTHING but COST to the healthcare system. All they have done is milk Medicare for every dime they possibly could... A compromise system is just that: compromised!!!

quote:

I will have to talk the poor woman into making a trip to the ER soon so that she can stay home

WHY? If your mom isn't sick, why should she have to go to the ER? Why do you need hospice? What is it you think they can do for you that home health cannot? The home health nurses should be able to document decline - don't they keep records? And why in the world would the nurse at the PCP's office think she would lose her license if the doc ordered an evaluation from hospice? Something is not right about all this... I think you should speak directly with the doctor and no one else!!! If your mom has given you DPOA and has a DNR, I don't understand why SHE would have to refuse treatment or be bothered in any way... Is she cognitively able to oversee her own care at this point? If not, the DPOA is in effect!

Something is very askew about all of this... what isn't your mom getting that you think she would receive from hospice? Honestly, I think all this is a tempest in a teapot... Or maybe I just don't understand...

The sun came out for 2 days, nice and bright. Mom perked up well enough to enjoy some company and drink all of her 'ensure'. I didn't have the heart to tell her that the consensus is that we need to make a trip to the ER and beg her to agree. I am hoping to have a minor excuse next week on a weekday mid day. I have been told by a few good people that there is an excellent case worker there then, very sympathetic, that can bully the young ER docs and make them like it.

I just couldm't try to make her go today.

So the idiot used "No weight loss" as a criteria for denial of even a DISCUSSION?
What an absolute moron.
In August, my 99 year old grandmother went to the ER after a fall, and in the course of examing her, they found a "huge mass" in her abdomen. Because of her advanced age, they didn't want to put her through too much "prodding and poking", but they did enough to convince themselves that she probably had advanced liver cancer (of which none of us had a clue, because the sweetie never complained). The day she died she didn't weigh ONE POUND LESS than she did when we saw her the previous April.
No weight loss my rosy red....................
I'm right behind you on this one BC (excuse the pun there!) Go get 'em, girl!

Didn't you mention your mom had pain issues?
Perhaps that is the route to try.

I agree, go over nurse know it all's head and speak to the doc.

Folks, I am not quite sure what happened around this neck of the woods in the last year. The old hospital got torn down and a new one built but they are also bought out by a new company. I have no clue what is going on over there. The same group bought out the private practice from my Mom's former PCP and set up this idiot who is afraid to wipe her own butt.

This is the closest hospital so by LAW, it will be where Mom is transported in an emergency. Possibly they have a geriatric specialist on staff, but there is NONE in private practice that has a relationship with them. NONE.

In the next town up the road is a gerontologist (which as I understand it, is synonymous with geriatric specialist in these parts, or at least as close as it gets.) Anyway, that doc is associated with the hospitals in the other direction, a different medical group, one that doesn't have any of Mom's records.

It is just plain simple stupidity. I am not taking Mom back to see a stupid idiot who can't even see to it that records are properly written down. THAT is a done deal. If I have to shuffle her up the road to see a NON-IDIOT thn I will have to do that.

Thank you all.... It just seems that what she needs,,, disappeared like mist around here. Thank you very much to Medicare cutbacks, MEDICARE,,,,that well run government hallmark of successful health care. I am sooooo looking forward to more of the same outstanding health care for the rest of MY LIFE.....OOHH YES< I AM VERY MUCH LOOKING FORWARD TO THAT!!!!!!

Recently, I got a visiting physician for mom who outright told me hospice care was available!
My mom isn't bed bound yet! WTF is wrong with this DR? I suggest another (a visiting one) toot sweet!