What to do when a social worker who doesn't understand BPD gets involved?

[OnPinsAndNeedles]

What do you do when a social worker who doesn't understand BPD gets involved?  My elderly Waif BPD mother, who lives with my brother, has recently been admitted to the hospital for cardiac observation.  Lately, she has been at odds with my brother, who takes excellent care of her.  She is not happy with the food he has been preparing for her, and has told the nursing staff at the hospital that my brother has been starving her (she doesn't like the brands of food that he buys, so she is refusing to eat!), and that she doesn't think that it is safe at home for her (she is also paranoid). She is not underweight.  She thinks by complaining about these things to the nurses, she will get her way.  What she doesn't realize is that a social worker has gotten involved and is trying to put her in a nursing home.  The social worker thinks that she is being neglected and abused.   This is absolutely not the case.  I spoke to the social worker this afternoon, and tried to tell her that my mother has BPD, and it was obvious that she thought that I was trying to cover my A**, and that there was nothing wrong with my mother.  The social worker has called Adult Protective Services to investigate.  This could get really bad!  As many of you know with a BPD family member, they can seem very normal, and can easily convince people who do not understand that they are the victim. Who wouldn't believe a sweet elderly woman?  Have any of you had a similar experience?  What did you do?

[Naughty Nibbler]

On Pins & Needles:

Ask for a psychiatric evaluation, while she is in the hospital, if possible. Unfortunately, the social worker is probably required to report all complaints of abuse (even false ones).  Paranoia is common in the elderly.  A veteran social worker should be aware of that.

You might ask your mom if she wants to go to a rest home.  Perhaps you might mention that could be the outcome because of her complaints. If she isn't interested in going to a rest home, she might quickly change her story.

What does your brother say about possibly having Protective Services at his door?

So sorry she is causing so much trouble.  Could it be better for the family if she did go to a care home?

[Turkish]

Have your brother document the heck out of everything. Grocery receipts, taking pictures of meals, perhaps even keeping a written journal. This is CYA if a government bureaucrat is involved.

[OnPinsAndNeedles]

Thanks for your responses.  We had a pysche evaluation done five years ago, when she needed surgery that she refused.  Would the hospital still have this evaluation on file?  The social worker at that time said, "Your mom is an interesting case.  I don't know what is wrong with her."  We told that social worker that she was diagnosed with BPD several  years ago, but the social worker didn't know anything about the disorder.  The current social worker doesn't seem to either. 

I tried to explain to my mom that her actions were going to cause her to be admitted to a nursing home, but every time I bring it up she says, "I can't hear you."  That always is her response when you tell her something that she doesn't want to hear.  She hears fine when I'm discussing things she wants to talk about.

We will definitely document everything (meals, hygiene supplies, etc.) from here on out. 

Today the doctor tells us that he thinks she is weak, and wants to put a nasogastric feeding tube in, because she isn't eating at the hospital.  He told us that she doesn't want the feeding tube, so he wants to family to approve it.  He also told us that he realizes that he will have to tie her to the bed so that she will comply.  How awful is that?  Well... .she isn't eating at the hospital, because they aren't fixing her what she wants to eat.  As I mentioned before, she is very particular.  Interesting enough, my brother brought her a McDonald's fish sandwich (her favorite thing to eat) and she gobbled it down. 

We have always felt that a nursing home would be a bad situation for her, because 1.  She won't like the food that they fix, so she will still need a feeding tube.  2.  She will never get out of bed.  She hasn't gotten out of bed since she has been in the hospital, but she was getting out of bed and showering and changing her clothes every day when she was at home.  3.  She will not be a good roommate, and will be combative with the nurses and people sharing her room. 

We realize that there may come a time in the future, when a nursing home is necessary, but my family doesn't believe that time has arrived yet, and my brother is still willing to take care of her.  However, my brother is terrified at the thought of Adult Protective Services being involved, because of the false accusations. 




   

[Naughty Nibbler]

My mom passed in Feb. Since Sept., she she was between a couple hospitals and two different skilled nursing homes (or in our case, no so skilled nursing homes.) I'll spare you from all of the details of the hell we went through. I do have some experiences you might find helpful.

My sister and I had to use my mother's medical power of attorney and make decisions. My mom lost her appetite and once she mentioned she wanted someone to shoot her, a psychiatrist appeared in short order.  All hospitals have certain psychiatrists that they call into the hospital, like any other specialist.  They put my mom on Lexapro, but then switched her to an older med called Remeron.  Remeron will stimulate the appetite as well as helping depression. It helped her appetite.

It isn't recommended to restrain patients. We didn't use a feeding tube with my mom for most of the times they recommended it.  We knew mom didn't want it, so we had them give her boost drinks (similar to Ensure).  :)own the road, when mom caught Influenza at her 2nd skilled nursing facility and went back into the hospital, she was near death and unaware. A feeding tube was used for a few days when an infectious disease specialist was treating her.

When mom got transferred from the regular hospital to an acute care hospital, she was put on an iv feeding for a few days. That could be one option.

Early on, mom hallucinated and was in restraints and that can create behavior issues.  They can direct some lasting anger toward some family members. Mom was restrained another time while septic, but she was so out of it, she thought I was her dog visiting her.

Tough decisions to make. My mom received a diagnosis of pulmonary fibrosis in Sept.  Along the way, she was septic 3 times ( twice from uti's and the 3rd time from pneumonia from Influenza "A" She ended up with Thrush from all the antibiotics. Caught MRSA in her mouth at her first skilled nursing facility and had another superbug, VRE, at a 2nd skilled nursing facility. Each time after becoming septic, she lost more and more of her short term memory.

My sister and I tried to honor what my mom had in her medical directive. We knew she didn't want her death prolonged or heroic measures to keep her alive only to lay in a bed with diapers on.

My thoughts and prayers are with you and your family. Some of these decisions are hard to make.  I had to keep reminding myself that I needed to make medical decisions in accordance with what I knew my mom wanted.

PS:  I'm in California.  We were blindsided after one of my mom's hospitalizations.  They can be quick to release patients from the hospital to a skilled nursing facility, before you know it.  Might want to check out a couple facilities just in case.  They could release your mom from the hospital, but tell you she isn't well enough to go home and want to send her to a skilled nursing facility for a week or two.

Naughty

[OnPinsAndNeedles]

Naughty,  Thanks for sharing your story.  It sounds like you had a very difficult time towards the end of your mom's life.  I'm so sorry!  I really hate the idea of restraints, and I've heard many horror stories about the feeding tubes.  We finally got the hospital to understand that she is a very picky eater, and they fed her macaroni and cheese and a roll and she ate it all.  So this morning they are saying that she won't need the feeding tube.  I wish they would have just listened to the family to begin with.  I never understood why they were considering a feeding tube at all.  My mom ate very well on Saturday, refused to eat on Sunday, and the doctor wanted a feeding tube on Monday.  How do you go from eating well to a feeding tube in two days?

By the way... .  my mom is also in California.  They have already mentioned that she is very weak, and could benefit from 20 days in a skilled nursing facility.  She is 88 years old, of course she is weak at this age, but she was still getting out of bed, showering, dressing herself while she was at home.  So what good will 20 days in a skilled nursing facility do?  How strong can she really get in 20 days?  The nurse has already told me that she is refusing to do any physical therapy.  We can't help but wonder if the hospital is milking the system.  The nurse told me that medicare would pay for 20 days of skilled nursing care.  The other option is that the doctor believes that the skilled nursing facility will get my mom and our family used to the idea of transitioning to a nursing home. 

Thanks for your thoughts and prayers.  I really appreciate them.

[Naughty Nibbler]

Medicare will pay for 100 days for a billing period (but they have to work on rehab). If it is still possible for your brother to keep her at his home, she would probably do better there. Could always get in-home PT. I know your brother doesn't want to provide a special meal just for mom, but he could stock up on frozen foods that she likes.

I think that if you reach a point that someone in the family has to perform a diaper change for mom, you start considering care facilities. That introduces what can be an uncomfortable situation for some. Definitely something my sister and I discussed and we would have had communicable diseases to handle.  Also, once they quit getting out of bed, you will eventually have bed sores to deal with.

If she doesn't want PT, not much to do about that.  When they get too weak to get up to use the restroom, they end up with diapers.  Nursing homes tend to use diapers. We found that they mostly used men to change the diapers. My mom was at a point that she didn't' care, but it can be troubling for some.  I think they use men because they would need two women to do the lifting, and men have more strength.

State of Calif. Has a website where they rate the nursing facilities and post violations.  After we ran out of days for Medicare coverage, we looked into the small guest homes where they provide nursing care in a home setting.  We actually found one in Long Beach that was run by an RN.

I wish you well with your future decisions regarding your mom. It has to be doubly tough with a BPD mom.

Naughty

[Naughty Nibbler]

Wrote my note above on my Ipad.  Now on my computer and it won't let me go back and edit.  Just wanted to say feel free to send me a private message if you want the Calif. website where you can research facilities.  If you happen to live in the Long Beach areas, I have some spreadsheets that I put together to compare local Skilled Nursing Facilities.

Naughty

[OnPinsAndNeedles]

I found the website you were referring to, and there is a lot of useful information on it.  I managed to find a skilled nursing center that sounds wonderful and is close to my brother's house.  We have decided to try a week in this skilled nursing center, and then reevaluate the situation.  If we find her restrained or heavily medicated when we visit, then she will not be staying.  One day at a time.  

The doctor who has been treating her at the hospital  for A-Fib thinks that she is simply depressed, and has prescribed Zoloft, in addition to her heart medication.  Obviously, he still doesn't understand her mental issues, but I've read that Zoloft also helps with anxiety, and OCD, so maybe it will help her. 

Thanks for your support and insights!

[OnPinsAndNeedles]

Thought we had everything settled, and then an Adult Protective Service person called.  She lied and said she was a social worker at the hospital.  She was trying to get us to sign papers so that the State could take over care of my Mother and put her in a long term nursing home.  They don't want to wait for a bed to open up at the facility where we want our Mom to go, they are ready to put her in a really bad skilled nursing facility that we have had bad experiences with in the past.  My father was in this facility briefly, but we took him out when we realized how neglected he was.  He had bed sores that turned to gangrene, and had been dropped on a couple of occasions when the staff tried to put him in his wheelchair.  It really bothers me that Protective Services is trying to force her into long-term care against her wishes or the wishes of the family.  It also bothers me that  the  Protective Services agent lied to us about who she really was.  My brother dialed *69 after he hung up, and the same person answered her phone, "Protective Services." 

[Naughty Nibbler]

On Pins & Needles:

Sorry to hear of the turn of events. One word of caution regarding the antidepressant - many people experience side effects for a few weeks when they start taking an antidepressant. One way to deal with this is to titrate onto it (i.e. Whatever the initial dose, start by taking 1/4 a pill for a few days, then 1/2 for a few days/week and work your way to a whole pill).  Most doctors don't mention this.  Hopefully, your mom won't have a problem.  Might want to read up on side effects.  That way you can have some idea what is going on.

Since Protective Services is in the middle of things, I'd demand an evaluation by a psychiatrist and make sure that you have the opportunity to discuss your mom with him.  I'd hold your ground and make protective services come up with a court order. They could be trying to intimidate you into agreeing to things that would require a court order if you won't give consent.

Find out who the real social worker is at the hospital and talk to them. Had your mom been visiting a doctor regularly before her hospitalization or had she been resistant to seeking medical care?

Is the dr. putting your mom on blood thinners?

Hang in there and don't cave to their demands without a court order.  There must be some personal advantage for the Protective Services person to warehouse people in the substandard facility.  Perhaps it is a time saver to try to put as many patient in that particular facility (perhaps a bonus for that person). 

[Naughty Nibbler]

I was curious and did some Googling on Adult Protective Services.  Found out that with the Obama Care legislation, they beefed up actions for Adult Protective Services.  Another example of government overstepping their boundaries.  Read some horror stories and the agency appears to be out of control and on a power trip.

You would have to wonder how it is that so many mentally ill folks, who are a lot worse off than the elderly, are left to live on the streets.  The elderly, however, can aggressively and unnecessarily be scooped up and warehoused in substandard elder care facilities. People working for Adult Protective Service seem to be on a power trip.

I believe that hospitals and other medical care providers are now required to report any issues they observe or are told about to Adult Protective Services. Sounds like anyone could make  malicious complaint and you will end up with them on your door step.  Some say that if you don't let them in when they come knocking at your door, that they will be back within 24 hours and remove the elderly person in question from the home.

It's stunning how government has overreached into our lives, but they refuse to enforce laws for border enforcement. On one website, I read about an 85 year old man who was removed from his home for no good reason.  Some one made a comment that said, "take him over the border into Mexico and bring him back".  If they think he might be an illegal, they will ignore her/him".

[OnPinsAndNeedles]

Wow!  I'm sad to hear that this problem is rampant.  The doctor did put my Mom on Coumadin, which worries me a bit since she already bruises really easily.  

They finally moved my Mom to the skilled nursing facility that we requested.  I still think this is an attempt to keep my Mom in a nursing home indefinitely.  Now that she is in the skilled nursing facility, it will be easy for them to say that my Mom is too weak, too sick, too whatever to send her home.  I will be shocked if they really ever let her leave.  I think you are right about filling beds and possible quotas/bonuses paid.  

Last night we were told that Adult Protective Services are still investigating. They have spoken with my brother (when they pretended to be a social worker from the hospital), but they have not interviewed me or my other 3 siblings.  Obviously, we understand the situation better than anyone who has just met my Mom.  

My brother visited my Mom last night, and she kept asking, "Why am I here?"  Even though the social workers claimed they would not keep her without her permission.  She has not tried to walk since she has been in the skilled care center, and refused to eat yesterday.  I am livid at what is happening.  The bureaucrats have taken an elderly woman who was walking every day, and was being fed what she likes to eat, and are creating a situation where she may never leave her bed again, and will eventually need a feeding tube.  How can they believe that this quality of life is better than what she had?  I am still dumbfounded that they are persuing abuse charges against my brother.  I feel like if anyone is abusing my mother, it is the social workers, and Adult Protective Services.  

My sister tried to calm me down by saying, "Well, Mom brought this on herself by complaining to the wrong person," and there is some truth to it, but my Mom has been diagnosed with BPD, so the social workers and Adult Protective Services should speak with people in the family who are not BPD to get a clearer picture of what is really going on. 

[Naughty Nibbler]

Her heart problems, or what health issues collectively caused her to be hospitalized could be affecting her energy.  Sometimes, things just catch up with the elderly and there is a downward tumble.

You can bring your mom some of her favorite things to eat, while she is in the skilled nursing facility. My mom liked sweets, so we brought her some of her favorite desserts when we visited her (when possible).  -My sister brought my mom some things like In-N-Out Burger, etc.

I believe you said your mom started taking Zoloft.  One of the more common side effect is loss of appetite.  This could be a temporary side effect that might go away after a few weeks.  Still might want to consider a new evaluation from a psychiatrist and make sure the psychiatrist knows about her lack of appetite.  Also, there is a med that can be given for appetite stimulation (her main doctor could prescribe that.)

Cumadin will definitely make you bruise.  My mom had horrible bruises on her.  Once someone is on a blood thinner, got to have regular blood tests.  It can really be a pain, as the dosages keep changing in accordance with the blood results.  There are a few newer blood thinners that don't require frequent blood monitoring, but they are expensive and sometimes hard to get approved if your doctor doesn't want to do the extra paperwork required to gain approval (generally not in the formulary for Medicare).  We did find that it was easier to get some of the meds approved when my mom was in the hospital or a skilled nursing facility.  There is a pro and a con to Cumadin versus the newer meds.  Our mom started to have a bleeding problem (blood in stools).  Upon inquiry we were told that there is a means to counteract cumadin, should my mom encounter a major bleed.  There isn't a means to counteract the newer blood thinners, should a major bleed occur.

Hang in there.  I think you will feel a lot better once you have a meeting with the skilled nursing home staff.  It's going to be tough with a BPD mom.  How often to visit.  Stress of trying to make frequent visits, or guilt if you don't.  One approach is to coordinate with family members who are close by and work together on who visits on what day. 


If you haven't had a meeting with the collective focals at the skilled nursing facility, might want to call  on Monday, talk to the social worker at the nursing facility and ask for a meeting. One thing I found was that it was generally easier to reach staff members by phone and talk to them, as opposed to trying to catch them during a visit. 

Be sure that the staff knows about her BPD. We had initial meetings (and a follow up meeting at one facility) about my mom for both of the nursing facilities she was in.  The group we met with from their staff:  Nursing super, social worker, PT manager, nutrition focal, recreation focal.  Menu's are generally provided to give the patients some choices in their food.

Trust me, someone will be there to get her out of bed and moving next week.  She can't be in a skilled nursing facility unless the focus is on rehabilitation.

Just thought I'd share some experiences with you.  Unfortunately, I learned more than I'd even dream of wanting to know about skilled nursing homes.

[OnPinsAndNeedles]

My mom is nearing the end of her 20 days of skilled nursing care.  It is rapidly killing her.  I feel so helpless.  She is blaming me for putting her in the skilled nursing care center, and won't accept that the doctor ordered this care.  She still has no appetite.  Last night they brought her pureed chicken soup.  We have told the center on several occasions that she will not eat poultry of any kind, but they do not listen.  She has lost a total of 12 pounds from when she was admitted to the hospital on April 30, to yesterday when they weighed her at only 98 pounds.  Her BMI is around 17%.  She tells me that she is constantly lying on her back.  It doesn't sound like they are turning her.  It looks like she might be getting ulcers on her ankles.  She has varicose veins, so I know there is a circulation issue.  I am so frustrated.  We trusted what the doctors at the hospital were telling us about needing skilled nursing care to get her strength up.  She is rapidly wasting away at the skilled nursing center.  It seems like they are not really interested in getting her strength up, this is just a place to wait to die.  Yesterday, they moved her from a semi-private (2 person room) to a 4 person room.

In addition, we are told that we must get rid of all the money in her bank accounts to qualify for Medi-cal as a supplemental insurance for Medicare.  She has a total of $5,000 to her name.  She does not own a car, or a house, or any other assists.  She was living in section 8 housing with my BPD brother.  We need the $5,000 for him to be able to stay in the apartment, to help pay his rent, otherwise he will be homeless.  

This entire situation is the result of "well meaning" social workers, and Adult Protective Services.  We felt harassed into making the decision to put mom in a 20 day skilled nursing program, because the Adult Protective Services thought that she was neglected because she only weighed 110 when she was admitted to the hospital.  So they strong armed us into putting her into the skilled nursing center, with the threat of prosecution.  Now she weighs 98 pounds, and can not walk.  I am beyond sad, and totally frustrated.  

[Naughty Nibbler]

Thought I'd Repost a few earlier thoughts.  Have you tried any of these suggestions

If a psychiatrist isn't the one who prescribed the Zoloft, a psychiatrist needs to see her.  Zoloft could be contributing to the appetite problem.  Whomever has prescribed Zoloft, needs to be approached on the appetite problem.  There are alternatives to Zoloft that can stimulate the appetite.

There is a med that can be given for appetite stimulation (her main doctor could prescribe that.). Have you asked for this.

Medicare will pay for 100 days for a billing period (but they have to work on rehab).

Have you had a meeting with the staff at the skilled nursing facility.

PS;  My keyboard is broken, can't use question mark and a few other things.

[OnPinsAndNeedles]

1.  They called last night and want to put her on sedatives, because she is upsetting the other patients.  They also want a psyche evaluation.  They did a psyche evaluation at the hospital before they transferred her to the skilled nursing center.  I would be okay with a second psyche evaluation if it is to determine whether Zoloft is the right medication for her.  Maybe they could adjust the psyche medicine, and it would also improve her appetite, as you suggest, Naughty.  I would also be okay with a sedative at night, to help her sleep, since that is when the paranoia is at its worst, but I don't want her drugged all day long.  She is already weak, and she can barely talk above a whisper.  If she is sedated throughout the day, we will lose the ability to interact with her at all. 

2.  They told me at the consultation we had with the head nurse, physical therapist, and social worker that they were going to put her on an appetite stimulant.  Not sure whether they have done this, but it won't matter if they continue to bring her poultry items to eat.  She can be very stubborn. 

3.  We were told that Medi-Care will pay 100% of the first 20 days, and then the remaining 80 days would be billed to us at $150 a day.  We were told that due to her limited resources she would need to be on Medi-Cal to pay the part the Medi-Care won't. 

4.  We had a meeting with the head nurse, physical therapist, and social worker (as I stated in item 2).  They told me that her vitals were excellent, and they felt that she only needed 3 to 4 more weeks of physical therapy, and she could possibly go home.  I'm highly skeptical of this since she is loosing roughly 4- 5 pounds a week, and her bmi is dangerously low, and she is still not eating.  Also, she hasn't been out of bed for 24 days, with her already fragile condition, I can't believe she would ever be able to walk again. 

[Naughty Nibbler]

Does your mom have Social Security or any source of income? If she had of been able to get a supplemental health insurance policy, it would have paid for the daily additional charges.

I think you can have $2000 and still get Medi-Cal. Do either you or your brother have financial power of attorney for your mother? If her $5000 is in a personal account, might want to get $3000 out. If anyone in the family has loaned her money, now would be the time to step up and get it. You could put it some one else's account and use for mom's later needs.

The other recourse is to pay the $150/day until it's spent down to the needed level and then go on Medi-Cal.  If her $5000 relates to special housing provisions, perhaps that can be taken into consideration. Housing assistance is listed on an exclusion list - might want to inquire if the $5000 can be excluded if it a deposit or reserve required for the housing program.

You can try to work through your mom's primary care doctor for a med change.  I found that each skilled nursing facility has certain doctors that will come to that specific facility.  All doctors won't come into the facility.  An alternative, it it take your mom out to a specific doctor's office. 

It's probably not a matter that your mom needs a full psychiatric eval, but generally a psychiatrist would be better versed on the best med for her - in view of her weight loss. Some primary care doctors aren't well versed on psychiatric meds.  In my mom's case, they wanted the psych. doctor to give her an eval.  I think it was for liability reasons, as my mom was depressed. 

Call the primary care doctor that sees your mom at the nursing facility, and talk to him/her.  My sister and I had the primary care doctor's cell phone number and used it when needed. It got so we couldn't trust info we got from the nursing staff and found we had to talk to the doctor for many things before giving approval.

Might want to talk to the rehab. doctor again.  If you mom hasn't been out of bed in 24 days, I'd wonder what they are doing in rehab.  Do they get her up in a wheel chair at all?  I can't tell you how many time a nurse told us our mom was doing great, when she wasn't.  When mom turned septic on two of the three occasions, we could tell something serious was wrong, but there was usually a nurse to tell us she was doing great.

Both my parents hit a point when their voice volume went way down to a whisper.  It was hard to understand them.  Is there any chance your mom has some level of dementia or onset of alzheimer's? 

I'd be concerned about the sleeping med, unless it is for your mom's comfort.  If she is miserable and can't sleep, then she might need it. If it is just to keep her quiet in a 4-bed room, then I'd be more apt to say no. They keep moving patients around.  My mom was in a 4-bed room for awhile. It was so noisy, that it drove me crazy.  Even three patients with the TV blasting on different channels will get to you after awhile.

NOTE;

The following information came from a website.  My mom had some success from The antidepressant mirtazapine (Remeron).  It helped her appetite after a couple of weeks. It has some sedative properties, so if they give it at night, it can help the patient sleep.

     The antidepressant mirtazapine (Remeron) has been used to help increase appetite and weight gain in         depressed elderly patients. Mirtazapine should be given at bedtime because of its sedating properties and to minimize the risk of other side effects, including the risk of falls due to sedation, dizziness, and orthostatic hypotension. Studies involving the use of mirtazapine for weight gain in nondepressed elderly patients are lacking. With appropriate monitoring for side effects and weight gain, mirtazapine may be a drug of choice for elderly patients experiencing weight loss who also have coexisting depression.