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sajones Asked June 2014

Mom's meds are no longer covered. What can I do?

Mom is in a nursing home and has been since Sept 2013. She is on Medicaid and Medicare, the NH receives her full Social Security check. 2 months ago the nurse calls me and tells me Mom's formulary has changed and one of her Meds is no longer covered and it will be an 'out of pocket ' expense..... my pocket at $149.00 per month for 30 pills for 30 days. I've been getting the meds on my own from the pharmacy and delivering them to the NH every month. Saturday the NH calls me to say she is out of meds again, it's only been two weeks since I delivered the last 30 pills. I questioned them and they said they would investigate, I drove the 70 mile round trip to the pharmacy and they gave me 5 pills until the heart doctor could re-new her prescription. Today is Monday and the NH again calls me to say Mom is out of medicine. Then they told me the NH doctor upped the dosage to two a day, I called the NH doctor and ask him if he upped the dosage to 2 a day he said no he did not and ask how many months has she been running short on this med I told him this is the first month. This is a heart medication that her heart doctor prescribed to her long before she went into the nursing home. So I called the heart doctor to verify the correct dosage, it is one per day. The heart doctor did not up the dosage and has requested that she be brought in for an appointment since it has been a year that he has seen her and she needs to be seen every 3 months. The NH doesn't want to take her because she is difficult to handle and they want only the NH doctor to handle her care. The NH doctor told me he goes by what the heart specialist advises and follows his recommendations on Mom's treatment. The Nh doctor only sees Mom every 2 months. Obviously Mom is not receiving the proper care since for the last nearly 3 weeks now has been overdosed daily on her heart meds. Also one of her ($5000.00 per pair) hearing aids is missing the the other one they left in her ear when they washed her hair so now it doesn't work either, I have had to buy her batteries for the hearing aids since she was taken inot the NH. I called the place where I got her hearing aids and ask if they could replace them, they told me not without a new hearing test. I truly don't know that Mom would understand taking a hearing test at this stage of her Dementia. They lost all her clothes except for what she had on and she ended up wearing those for several days before I realized all her clothing was gone. For two days I, myself, had to go through every patients closet in the NH to locate Mom's clothes. I never did find all of them. I ended up having to go buy her $300.00 worth of clothes, underwear and shoes and night gowns and house robes... Everything!! I pay for her to have cable TV in her room and bought her a TV.... the original remote went missing and now the new replacemnet remote is missing.. I've had to replace 2 pessery rings, this is a prescription item also, to the tune of $120.00 each and now her glasses are missing as well. One of the male patients comes into her room at night time and tries to kiss her, she is scared to even go to sleep. Yes I have told the NH administrator and he laughs it all off saying he'll look into it yet nothing is never done. What can I do??? I have to work and I can't leave her alone in my house while I work, I do not make enough money to hire somebody to stay with her while I work. I am so scared and so worried about Mom. PLEASE somebody advise me. What options do I have, this is the only NH for a 50 mile radius of my home and I'm not so sure any of those would be any better. I am all she has there is nobody else to help me at home with her. I feel like because she has Dementia she is a second class citizen, she worked her whole entire life and to be treated this way just rips my heart out and I can't do a d*mn thing about it. Pleas God help me help her.

Iwentanon Jun 2014
They could be using her meds for another patient...my brother who is in assisted living although he has medicaid and not medicare insist that his meds go through certain brands and Walgreen's because, the meds that the nursing home uses are not a certain brand and are inferior, you can still use your own doctor, why does the nursing home have to take your parent?

You can still use their own doctors too! Do not let the nursing home bully you...

Patts44ok Jun 2014
Sajones,
You've received some wonderful answers here to help with your issues. First and foremost, contact the Ombudsman Supervisor for the nursing home through your local Area Agency on Aging. He/she has the legal right to investigate complaints about resident care where family members may not be allowed to go. Please keep in mine that the Ombudsman cannot look at medical records without resident's or POA's permission (verbal is all that is needed).

Second, ask the nursing home administrator or director of nursing to set up a Care Plan meeting so you can go over all the issues you've mentioned. A meeting of this kind should be conducted each time there is a change in your mom's condition (drastic being the key word here such as changes in her medication intake). Ask the Ombudsman to be present for the meeting, along with the Administrator, DON, Social Services Director, Dietitian, Kitchen Mgr, Activities Director, and a CNA who may be your mom's primary caregiver in the facility. With all these people present and information being shared, no one can say "I didn't know that." As heads of the departments, they are responsible for ensuring the resident's needs, rights and wants are carried out by the staff they supervise.

Document, document, document. As a former Ombudsman, I loved when residents or relatives had everything written down with dates, times, and names. The facility is required to document everything about the residents, but with the extra documentation by a loved one, it helps with investigations.

Finally, if the hearing aid was lost during the care of your mother, the facility is financially responsible for its replacement. Keep on them about this as it's easy for them to push this costly issue into a corner.

Ask your Ombudsman for information about resident's rights. What I always told my residents is, "They are staff. You are the resident. They work for YOU!"

Good luck and stand strong.

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sherry1anne Jun 2014
I think that there should be a full blown investigation of the home that your mother is in. Obviously something is remiss here. The question that I have is WHY DO WE HAVE TO PUT UP WITH THIS CRAP FROM NURSING HOMES? They all seem to be the same as far as I have seen from my friends and associates parents experiences. If the cost is on average $87000 per year, wouldn't it be more practical for the medical insurance to pay housing and round the clock care expenses for them to live home? They don't need round the clock medical care. They need a caregiver, not a jailer that steals or ruins everything that the elders have. Maybe it's just me since my mother is able to live at home.
My cousin's husband is in a nursing home and she is not having these experiences, but she visits 3X per day. It is less than a mile from her home.

Thanks for allowing me to rant.

CynthiaLuman Jun 2014
Hello my name is Cyndi its nice to meet you. Please go visit your mom write down everything that is in here room. Write down all the meds she is on and then tell the staff from now on your only going to bring her enough medication for a week at a time. Tell them you will do her laundry and place a hamper in her room. Then tell them that if this doesn't change immediately then you are going to report them to the state, call the police and report the medications that come up missing because most likely there is someone there that no one visits and to save money they will take meds from those that do need it and give them to them. Sad but true. I have worked in a NH before lots of bad things can go on in there. Tell them you are going to report to the police this person that is violating her human rights. Also
tell the police they are abusing her by not keeping this person locked or tied down.

Only take her enough clothes for one week. plus 2 spare outfits. 2 night gowns and 1 robe. 1 set of slippers and one pair of shoes. Find a small filing cabinet and have her keep her shoes, hearing aids at the end of the day and her glasses at night and lock it. Tell the staff if she is not capable of doing that, then ask the charge nurse on night and morning shifts this is what you want done. If they do not follow your orders then tell them you will take them to claims court for the expense if those hearing aids come up missing again. You can get a lawyer buy your money sounds tight so do some research and go to a book store or court house to get the paperwork it takes to file a theft report. Also the next time something comes up missing tell them you will call the police and then report the theft. This should detore them in the future. Its sad you have to go to these lengths but that is what you need to do. As for the medication explain to the doctor that they no longer cover this med you are having to buy and you want her switched to another kind. If there is nothing compriable to the med she is on then call medicaid and see if they won't override it. If they won't get a hold of your doctor and ask them what kind of programs they have to get reduced price on this and all her medications. There our county or local agencies that the elderly. Use all your resources if you don't know where to find the give me your county and state and city and I will do some research for you to get informed.

Also check all pharmacies and your regular doctor to find out what can be done to reduce the cost. I am sure there is other meds out there though and I would start with the doctor first. My email address is cal8111959@gmail.com you are more than welcome to email me and I will help you any way I can I work for BlueCross/Blue Shield and know some of the ins and outs other might not. You received a lot of good advice above. Follow all of it. But I do know if you get a hold for the head administrator and tell him you will follow your rights and your mom's rights and have the place inspected by the state things should change for you.

The main one you want followed is locking her things up at night. Sounds to me others there are suffering too and either the families don't care or just put up with it. Also tell the administrator that you are going to the police about the medication theft and if anyone dares to take this out on your mother you will shut the nursing home down. That you are tracking everything and he laughed at you the last time and nothing was done. Now you will take the action he should have done weeks ago.

Now for the having her at home. Call your mothers church if she does not have a regular church or your church then call the senior center close by and ask them if they have volunteers to come sit with your mom while you are at work. I know down here in Texas we have the angels of mercy and they have volunteers for just such a thing. They even have people that are assigned to one elder person and they take them shopping or do errands for them. clean and wash clothes. There are lots of resources I just need the city and county and state you live in to be able to get you phone numbers that will help you.

If all the above fails then get her into another nursing home. or ask a family member to move closer that you need help. Do you have any relatives brothers or sisters? Aunts or Uncles? Children ? Look forward to working with you and helping you out your not alone in this there are those of us that will help you and please call ombudsman for your state. And get the owners name who truly ones the facility they might not ever be aware of what is going on. The Elderly do have rights.

moondance Jun 2014
Some one is messing with you. Having worked in these NH's I know of how meds disappear. I have learned to trust no one in the NH field & I have my R.N., as well as several other degrees to deal with this. Nurses, I trust not-my experiences in the field have taught me this.
Talk with the primary care physician & I am sure that the medication that you have been told will cost MORE-can be replaced with one that is in the acceptable formulary.
I have become very cynical over the years.
God's speed...

stevensmom Jun 2014
Unfortunately, things like this are going on all over. My state newspaper (Des Moines Register-Iowa) has articles all the time telling how some facility was fined for not doing their job. We even have registered sex offenders living in nursing homes and one of them molested another patient. Our governor and his office say they don't want to have a "gotcha" attitude towards regulating and overseeing the nursing homes. He cut the number of staff from the regulatory office and has cut their budget as well. So who's going to watch them?

Scary!

msdiva Jun 2014
is it a narcotic then somebody selling orr taking them for theirselves but if not somebody is giving them to someone else

msdiva Jun 2014
sounds like to me there using your moms meds for someone else and they do that in a nursing homesometime you're going to need to supplement just to pay for your moms meds but I will go to the administrator for the Director of Nursing because somebody is using your mother's name it's only been two weeks and she had a 30 day supply sorry I'm a med aide that does not add up

tiny450 Jun 2014
pilfering meds and selling them might be a situation that needs police intervention.I know one place I worked this happened and the family went to the police right away.Turned out they were right.Something is definitely wrong.I hope you have contacted someone at the state level.Good luck and stay in touch

Cyncyn Jun 2014
I agree with all the above advice. One thing I do is get a copy of Mom's monthly med sheet and then balance it back to the bill. I do question when there is a statement like "increase this med if noticed agitation". I want to know "who" decides to give the med the RN or one of the many med techs that are not certified in recognizing true agitation or some one that is upset. When I see a day that she has not received any meds I ask the RN I do not even go to the Admin. She explained with a sheepish grin that they must have just forgotten to initial that day. I told her that was not an accepted reason with out a smile and reminded her it was her license these people were using to distribute the meds.
You need to move you mom I know it is not easy. I live 1500 miles from mine. My sister is 12 miles away my brother 22. Neither enjoy going to visit. I wanted Mom out by me she wants only to be in her home state. I flew back last month and reviewed three places and moved Mom for the third time. This place is smaller only 12 residents. She has a lot more personal attention and even has so one to play cards with her. She gets her hair done and nails both feet and hands by a trained manicurist for under $100. Per month I pay for it and call her every day sometimes she remembers who I am other times she does not but we talk anyway about the weather or the ( blankety blank ) place she lives in. I will send up a prayer for your Mom and you.
The kissing freak not a laughing matter turn find out who OWNS the place and tell them. Then get her the heck out of there.

kingdomkid Jun 2014
OMG! You need to take this advice and take pics when you can along with contacting every gov agency on aging and state official via certified letter so they have to sign for it and can not deny knowing about this. This will force their hand to investigate and straighten up.

vstefans Jun 2014
Either they can switch meds to something covered, OR they can try to justify the non-covered one and deal with that hassle. With Medicaid here in AR it is every 6 months you have to re-document. Would you mind sharing what med it actually is? And is it really Medicaid/Medicare formulary or preferred drug program, or is it just THEIR in-house "formulary," which is primarily formulated to save them $$?

And, I hate there is no other facility near you. From your descriptin , this place pretty well stinks, and I would go to the ombudsman, lodge a medical complaint with the office of long-term care, and see if you can make enough of a stink that they would offer to reimburse you for lost medical equipment. Possibly the parent corporation of the place if it has one would be interested in a documentation of all the above. Losing a pair of shoes or one or two articles of clothing is expected, but what you are describing is negligence and irresponsibility, especially with the hearing aids. With those, you could try a less expensive amplifier; I got one from a local university speech and audiology center with a technology loan closet that more or less worked. If they are really the only game in town maybe that's why they feel no impetus to improve. You might be better off driving more if there is a truly better place an hour and a half away.

Linda22 Jun 2014
Is it possible for the doctor to file a formulary exception for this med?

GardenArtist Jun 2014
That should be "have" discounted programs. Sorry. I really do need to get new glasses!

GardenArtist Jun 2014
VegasLady made a good suggestion on another post, so you can thank her for this suggestion: Contact the manufacturers of the med that's no longer covered and ask if they have a low income program. Some pharmas has discounted programs.

willows Jun 2014
Nursing homes are a nightmare! I would avoid a nursing home like the plague!

pamstegma Jun 2014
File a complaint with the joint commission at jointcommission.org. There is a serious problem with medication tracking and I would demand to see the medication logs for my mother. As for the kissing, I'm not sure if this is real or not, dementia does weird things to the brain. Insist on surveillance for mom.

Chicago1954 Jun 2014
"I assume you have ID labels ironed onto her clothing, and labels glued onto her other property?"

Yes^ That is a must. Write her name on everything or paint them pink, or something. Someone was borrowing my mother's cell phone charger and then, bringing it back the next day. I spray painted it pink - end of problem.

My MIL is a very nice AL and she has started to do her own laundry. She doesn't want her name on her clothes. I know others that do their family members laundry at home. But, that would certainly be more work for you.

My doctor (MD) told me that the $4,000 hearing aids are a scam and that the ones from hunting stores are the same thing.

Your med problems are legal situations that the NH, must handle promptly. There is no excuse for missing meds. Did you check with medicare to see if they truly stopped paying for them? Or is the NH trying to pull a fast one.

No men should be allowed to kiss your mom. That would make me the maddest of all of the problems.

quiltinrealtor Jun 2014
Buy them from Canada. That's what I did when my mom fell into the donut hole. Or ask her Doctor for samples!

GardenArtist Jun 2014
Isn'tEasy, just a comment on prescribing drugs which are covered, especially cardiac ones...

My father's treating cardiologist prescribed a specific med for my father. His VA "primary care" physician decided to change it to another med. I contacted our cardiologist who said he definitely did not want the substitute medicine; it wasn't that appropriate for my father's condition at the time.

Several years later we learned from my father's neurologist that the med the VA doctor wanted my father to use has side effects which can cause neuropathy, loss of taste and loss of sense of smell. My father had developed all three of those problems.

So substitution isn't always possible, save or advisable.

IsntEasy Jun 2014
I'm sure I don't fully understand the complexities of your situation, but if a formulary has changed, I'd take the letter to Mom's doctor and make it his/her problem. They should prescribe a drug that is covered.

Because you mention that your Mom has dementia (and is 'difficult to handle' so I assume her dementia is not in the early stages) along with other health conditions, I'd also have a candid conversation with the doctor about why Mom is on all the drugs and ask what is the goal of taking the meds. Doctors sometimes often don't like to have conversations like this – they'd rather just treat whatever symptoms and conditions they have in front of them – but I'd want my mom to be treated as a whole person who deserves quality of life and a good death. Ask her doctor if (without drugs that don't contribute to her quality of life) she is a candidate for hospice care. That would solve the NH situation as well.

cher062 Jun 2014
I would start to look for a better NH. none of what you babe posted should be the norm. the 1st NH my FIL was in was like the one you described his clothes and shoes would go missing every 2 weeks. it took me 8 mos to find a new place (so glad we did) . until then when I got the new clothes I took my sewing machine and embroidered his name on every stitch of clothing even sox and underwear. host shoes on the side of the shoe in permanent marker his name. after that nothing "disappeared " again.

I've never encountered a situation where you had to use only the NH des. definitely a written complaint to the NH and state each and every time you have an issue.

I actually put in writing to the nursing home that every time a med was adjusted, added or changed that I had to see the dr orders and if it wasn't covered by his insurance then it wasn't to be used and a med that does the same thing but is covered was to be ordered. you may have to be a real pain to get them to comply but the will eventually do it.

our best day was the day he moved to the new NH.

realtime Jun 2014
Tiny 450 is spot on about pilferage of medications. Follow the suggestions about contacting ombudsman, state agency which licences nursing homes, etc. They will take the complaint very seriously. All the other things --- who knows; the cost of the meds --- who knows. But mismanagement of medications, that is, the disappearance of part of her prescriptions, brings out inspectors in force. When you report it be sure to mention that the facility receives funds from Medicare and Medicaid. Apparently that makes any malfeasance more serious.

GardenArtist Jun 2014
Pilfering pills? That's scary, not only because of the financial abuse but the fact that the meds might be in an area not subject to lock-up.

Sajones, if you do move your mother to another facility, you might want to consider contacting the local police and telling them about the med situation. If there's theft, there could also be black market resale.

Our last 2 rehab experiences were with a chain with several facilities in Michigan. After some research and on-site interviewing, I chose the one with the best reputation, about 50 miles from my house.

One of the practices which was new to me was that the meds were kept in the top, locked, drawer of the patient's dresser, in his/her room. Other than taken out for administration, they never left the drawer. I thought that was a much better way of handling med administration than what I had seen to be the apparently typical way of pushing a large cart filled with meds.

When we left the first time, the nurse gave us the balance of the meds, as they couldn't be used for any other patient. The second time, a different nurse didn't want to give out the meds but finally gave us some and kept others. Since they couldn't be administered to any other patient, I was suspicious but after thinking about what would be necessary to investigate theft, I decided my limited time would be better focused on helping my father recover from his second hip fracture.

terryjack1 Jun 2014
Contact the local long term care ombudsman right away. The ombudsman is an advocate for your mother. If your mother has medicare and Medicaid and the physician writes an order for an item or treatment I thought Medicaid would cover the cost; there are the occasions where pre-authorization is required and the physician can do this. Is there an assisted living facility closer to you, maybe you can apply for waiver services and they would cover the cost of assisted living. Contact your local Area Agency on Aging, senior center or Bureau of Senior services, they can advise you on how best to help your mother. Her clothing and her medications should not come up missing, something sounds not right in that nursing home. I know it is difficult trying to keep up with everything, the Area Agency on Aging will have knowledgeable staff that can offer you support and assistance.

tiny450 Jun 2014
Please follow the above advice.Something is "definitely wrong in Denmark".You need a state ombudsman to check into this.Contact your state's resources.They will immediately send someone to investigate.This is so wrong on so many levels.You need also to get a lawyer for the elderly.Someone is pilfering pills.I worked in the medical field and there are things I could tell you that would make your hair gray...so get on that phone and call..good luck

GardenArtist Jun 2014
Agree with the documentation advice; someone on the staff will notice and spread the word to "be careful - she's documenting!" Still, follow up with advocacy and ombudsman agencies. I don't know if APS would become involved in an institutional setting, but you could try.

I assume you have ID labels ironed onto her clothing, and labels glued onto her other property?

I would also start looking at other facilities, even if this one is the only one in a 50 mile radius. That might be exactly why they get away with the poor treatment you describe. Even if you have to drive farther, if your mother gets better treatment you might be able to spread out your visits.

In the past I've arranged to come in and work on a Saturday to compensate for time taken off during the week for family medical issues. Perhaps you could try that.

Also, investigate the Family Medical Leave Act - perhaps your employer would allow you to take off time periodically just to get your mother into a better facility and visit rather than several weeks consecutively.

As to the heart meds, even though it's difficult she really should see her cardiologist, if only to reaffirm that her condition hasn't changed and that she wasn't affected negatively by the dosage mixup at the nursing home.

And unfortunately it seems you'll have to comparison shop for the meds unless you change the Part D coverage.

CVS Pharmacy did have a prescription plan with flat rates on 90 day supplies of selected meds. I left them and went with Sav-on Drugs because it was the only pharmacy I found that could provide the few meds my father needed that were still manufactured in the US. Too many others were supplying meds from emerging market countries.

Also try any local hospitals; two in this area have their own pharmacies, sell directly to patients, and one has a discount for seniors.

When I read these posts about someone being the only one visiting someone in a facility, I keep wondering if there are some options for drop-in visitors from churches or some type of caring agency. When my father was in a long-term care facility 30 miles from where I lived, I contacted the local group of his church and they sent members to visit with him.

It seems as though this is an area that's been untouched in the whole caregiving issue.

wendala128 Jun 2014
First let me say that you are a wonderful care warrior for your mom! Now a couple other things...Call the NH Administrator and list each of your concerns. Write them down so you don't forget any of the above things you told us about. The NH should have a social worker on staff to help with cost issues regarding meds and hearing aids, etc...Also, if you get no where with the social worker, contact the manufacturer of your mom's meds and see if she can get them for free based on her income. You will need to fill out a form and the doctor will have to sign it. Don't go through a company to do this as they all charge a fee. You have already spent a lot of your own money which you will never get back. Good luck to you and come back and tell us how you and your mom made out!

caregivercoach1 Jun 2014
There should be an Ombudsman who you can go to for all concerns and issues regarding NH facilities. Call your local Senior Linkage Line and they should be able to get you connected. Depending on what type of care your mom needs, are there any respite volunteer programs in your community that could stay with her during the day while you work, or even an Adult Day Program. I hope these suggestions help, don't give up on wanting the best care possible for your mom. She is so lucky to have you as her caregiver.

onlychild13 Jun 2014
Hello, I can relate to your situation. My mother was in a NH 2 times and both times I had to take her out because of the bad care she was getting there. She got a stage 4 ulcer on her leg and they told me they would have to amputate the foot if the infection reached the bone. I brought her back home and contacted social services and got a Medicaid waiver. With this I was able to get a person to stay with her while I worked. It is only 7 hrs per day but that is better than nothing. I prepare her meals in the morning before work so the aide only has to groom her and feed her till I get back. I have the evening shift :) My mother has been to the hospital several time and everything has been covered by medicare/medicaid.

I would recommend that you contact your local agency and get all the help you can for her. If she has medicare/Medicaid she may even qualify for foodstamps. You can then get her something nourishing because as they get older they may refuse normal food. Get all the help and get her out of that place if you can.

God Bless You :)

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