uBPD elderly mom acting childish and delusional - creating the next crisis

[Methuen]

It's been a while since I posted a thread about my mom.

She's brewing for the next crisis.

She's 86 with an encyclopedia of complicated health problems.  She lives independently, but she isn't at all independent because she has H and I supporting her (we have boundaries), and enlists an army of friends to do things for her.  She FOGS them.  For 60 years I tried to do my best for her, but, her manipulation, abuse, narccisism became too much for my mental health, and I decided to come out of retirement to accept a job offer (to give me space from her).  She had a nuclear meltdown, screaming at me how selfish I was, and then screamed repeatedly to get the   out of her house.  My husband took over the grocery shopping for her, and taking her to her eye appointments with me returning to work.  Ten days later she pretended it never happened.

She has macular degeneration and gets shots for it (both eyes).  Last October she got endophthalmitis which is an eye infection that can cause blindness.  For 10 days she stayed at our house as she needed drops in her eye (the infection was in one eye only) every hour.  For days we went without sleep.  The shots decreased gradually to 4 times a day, but our life was on hold and it wasn't sustainable, so I got home care involved, and she started receiving home care services in her home. She's been receiving home care for the drops since November.

She hates having people come into her house.  She has no gratitude.  She feels no gratitude.  Only resentment.  Only hate.  She can't appreciate that people coming into her home to give her drops is assistance that will help her keep her vision and stay in her home.  She refused assisted living 3 years ago.  

She wants to do her own drops.  She has advanced Parkinson's and shakes like a leaf.  She denies that she has Parkinson's (she claims it's only tremors), and she refused to take the Cinimet medication the specialist Dr prescribed for her to help with the shaking.  She got mad at her opthalmologist because she said she wanted to do her own drops, and the opthalmologist calmly said that with  her shaking she couldn't do it on her own.  

She has been playing games and telling lies to stop the home care service because having people coming into her home stresses her out. She's been telling every one (including home care helpers) that her opthalmologist said she could give herself her own drops.

A long time ago I suggested to home care that they speak to her opthalmologist, which they did.  The Dr told home care the drops were too important to risk her giving them herself.

Tonight she sent me this text:
Hi.  Hope you had a good day.  For 3 days I've been successfully giving myself my own drops.
 Home care refuses to take the binder away [it documents services].  They say they need your consent.  They keep signing the ledger so they get paid.  The opthalmologist gave me the OK.
 What do I do?

Followed by this text...
I think I would feel safer if we changed the security code for the key box to a new number.

Home care uses the security box to access a key to enter her house to give her the drops.  She wants me to change the number so home care can't get into her house any more.

I haven't responded to this.  I'm being set up to be her target.  My husband says I should respond.  I don't know what to say that won't trigger her to make me her target.

Our son is home visiting, and set up to have his grandma come to our house this Saturday.

Seeking advice for how to respond to her texts.

[zachira]

Methuen,
I hear your frustration about your mother, once again trying to get you involved in her health care in ways that are unreasonable and could be detrimental to her health and your well being. My advice about what to do may not be the best, and it is what has worked for me. I would say not to respond to her texts, as you know her responses will just be plain unreasonable. I agree she is targeting you to get you more involved again.

[WalkbyFaith]

How frustrating and stressful for you. I'm so sorry.

I would suggest
a) not responding
b) keeping it brief with something like, "I think it's best to keep the current arrangement Mom, just to be sure since these drops are so important!"
or c) if you wanted to call her out on the lie, you could always contact her eye dr to see if they really did give her the ok?

[Notwendy]

I am so sorry Methuen. Her actions are self destructive. I wonder if she's no longer legally competent to make that choice and it may be time to get social services involved and some sort of POA?

My own BPD mother plays all kinds of drama games with her home helpers and medical team, but she is still savvy enough to not put herself in physical jeopardy. In addition, she prefers to have help in the home. If she were not able to meet her physical needs, the only step we could take would be to try to assume POA.

Your mother is either threatening to do this to get you to come do it, or she's not mentally competent to take care of herself. I think if she were to dismiss the home health - the next step would be to contact her doctor to have her evaluated for mental competency.

[missing NC]

Hi Metheun,

This sounds utterly frustrating in that if you tell her the doctor disagrees she will explode and if you don't reply she will also likely go ballistic.  I have a few thoughts, which may not appeal to you - in which case, please feel free to ignore them. ;-) 

The first is to wonder if she has to take the drops indefinitely. If there is an endpoint (and perhaps if there is not) I wonder if she would be more manageable if you just kept kicking the can down the road with the assurance that the doctor will reassess the situation in the fall.  That would technically be a true statement as the doctor would be continually assessing her situation as a patient.

The second - with or without the first - is that your son's visit might serve as an excellent distraction. When my late mom was first developing dementia and got on whatever negative issue was bugging her at the time, I learned to change the subject by announcing whatever was new in an excited voice by saying "Oh!  Did I tell you...?"  Even when it was something really banal such as my son taking tennis lessons, it worked very well at least until she thought of something else that irked her. 

The third idea, which again may or may not appeal to you, is to send her something like a delivery of frozen chicken cordon bleu or a fruit and nut basket.  There are companies such Harry & David for the former and low-cost options on Amazon for the latter. Such gifts afford several benefits:  the novelty of something arriving in the mail gives her a hit of dopamine which should (hopefully at least nominally) improve her mood, it offers reassurance  that you care about her, and it offers something positive or at least neutral to talk about (Hey, how were the pears?  Do you remember the ones we used to get back when...?).  Of course, I realize it may just give her something else to complain about, but I think there is a good chance of entailing a few positives. 

Anyway, your situation is really tough given the complexity of her multiple health issues coupled with personality and the effects of aging.  I'm glad to hear your son is there for a bit in addition to your husband. 

[livednlearned]

Methuen, do you agree with your H that you need to respond? I don't have a thought one way or other I'm just curious if you feel the same way, and what the downsides are of not responding.

I have a very self-care focused relationship with texting and tend to be an outlier when it comes to not responding by text.

I don't know what to say that won't trigger her to make me her target.

It sounds like there is a history here with this beef, but that most of the interactions are between her and the home health aides, is that correct? Is this the beginning of her trying to triangulate you on this topic?

Your mom likely has a lot of time to stew on this and she's trying to solve a problem without all her faculties.  

It does seem like she's trying to say Methuen has the power to make decisions. Then she can be mad at you. "What do you I suggest I do" strikes me as bait.

If it were my pwBPD, I would respond with "It sounds like you have some thoughts. What would you recommend?"

I would do it by text.

You could add "Grandson is on his way, won't it be nice to have everyone together this weekend." A distraction like missing NC says.

If your mom can bring forth a plan, then strategize the next text. I'm guessing she is not great at problem-solving? Each new text is designed to maximize her responsibility.

The two pwBPD in my life require slightly different approaches, but I would summarize both as me being light as a fairy.

SD25 (uBPD waif) wants others to solve her problems. She rages internally. It's less anxiety producing to keep bouncing things back into her court. I tend to use a lot of non-verbal or validating type questions with her.

With raging uBPD brother, he seems to want it both ways: rage at x indignity, get you worked up trying to help solve it, then be furious at what you come up with and mad he has to handle everything on his own all the time.

Not being a target isn't really a reasonable goal with him, but I can kind of draw out reasonable next steps or questions that put him in kind of a topic bind.

For example,

Me: "It sounds like you have some thoughts about x. What would you recommend?"

Him: "Call the DMV and have them take away her license!"

Me: "Oh. Huh. How would that work?"

Him: "How should I know! If she kills someone we're all screwed. I won't allow her to step foot in that car!"

Me: "I wonder how that works, the thing you suggested."

Him: "I already told you I don't know! We have to call her doctor and tell them she's a danger."

Me: Non-verbal uh huh, hmmmm, yeah. (btw I am becoming great at this  

Him: "I always have to handle everything, no one helps me, I'm taking care of them on my own."

Me: "You live close and see them, you know what's happening."

Sometimes this kind of thing works. If he has a plan that engages me directly, I'm learning to ask open-ended questions and wonder a loud about things.

I don't know if something like this would work with your mom. uBPD sibling has narc traits and questions seem to reassure him that he's in a one-up position. With uBPD SD25, the questions confirm that she's a martyr expected to solve everything and weirdly, she seems to get something from that.

My goal is mostly to avoid rescuing or fixing or doing something I don't agree is right. Without actually saying that.

*edited to add: I ascribe to the school of less is more or the BIFF approach. The smaller the verbiage, the smaller the target. Little sentences that are harder to hit.

[GaGrl]

I would move it back to the doctor in a way that sounds as if your Mom might be "right" --

"Well, since Home Health follows the doctor's guidelines, you could certainly talk to him about his current directive to them."

Then stay out of it and let her handle setting up any appointment or conversation.

As to changing the security code? Not an option. It's one of those safety issues where you have to remember that "No" is a complete sentence. Or just ignore it.

[yamada]

what does your experience and inutition tell you?/

[Mommydoc]

I am also finding less is more works best in my situation. I personally would not respond to this text at all.

With my doctor hat on, I know the doctor did not give the OK, so no need to call him/her.  I would check with the home services. My guess is they are still coming and giving the drops. If that is true, perhaps, there might be a middle ground, such as they come, she attempts to do it herself, and they witness. If she does it well, ( very doubtful) they document drops given self administered. If she struggles they give them, the more likely scenario. If she keeps on about she doesn’t need them, which she will, I would just say it is great you can do it, but their job is to keep track and document for the doctor. They are following doctors orders. I have learned that it is easier for them, as they are neutral, to just keep doing what they are doing. You don’t have to fix this, as it is working perfectly.

[Notwendy]

On an aside note, I think my mother's doctor is a saint. He's taken care of both my parents and now my mother. He knows how to hold the line with her. She's gotten angry when he does.  She tried another doctor, figured out that doctor said the same thing as the other one ( held the line with her too) and went back to the regular one.

Dad had signed consent forms and I took him to some appointments and so have made a connection with this doctor. BPD mom did not, but if she says anything about him to me, I take his side.

It gives me peace of mind to know he's providing her medical care. If she doesn't comply, that is on her. However, if he was concerned, he'd order home health.

As Mommydoc says- probably your mother's doctor is probably handling this.

[Riv3rW0lf]

Hi Methuen,

I don't have any advice, really, but just wanted to offer a bit of support.

 

[Methuen]

Thank-you everyone for your support and replies.  The support is helpful beyond words.

I received a call from a home support worker this morning, explaining that  the morning home care visit had not gone well.  She explained that mom was angry, verbally aggressive,  and resisted having the drops put in her eyes.  She insisted on doing it herself.  The worker documented that mom struggled, and touched her eye with the drop dispenser.  Mom aggressively told the worker she was "tired of being treated like a child", and to take the home care binder, or she (mom) would throw it out.  She also said she was going to have the code changed on the lock box so that home care could no longer enter her home.  The worker also noted that mom had told her she was going to her nurses reunion in June 2023 (a cool thousand miles away - 3 flights).

Our son (golden child) is home visiting, and my uBPD mom set up an order-in pizza night at her house with him, and he came home to inform us about it a few days ago.  

We brought the pizza to her house tonight, and after dinner, she was delegating jobs we all needed to perform for her.  H was doing technical stuff on her ipad.  S27 was busy watching the NHL hockey playoffs and laying low, when she turned to me, and told me what code she wanted me to change her lock box to, so home care couldn't enter her home.

I played at being dumb and stalled.  H took over the conversation, as was the plan.  I disengaged.

A few minutes later, home care arrived to give her her drops.

The   hit the fan.  I think our son was truly shocked at how rude and horrible she could treat another human.  He had never seen that side of his grandma.  She basically told the home health worker she could do her own drops, and "don't ever come back".  She actually said "you all make me feel like a child, like I can't do anything!"  She was instantly all riled up and verbally aggressive.  She treated him so badly.  It was truly embarrassing. He handled it professionally, but it was awkward for everyone.  He watched her administer her drops.  She missed, but claimed it went into her eye.  Our son challenged her and told her it didn't.  She tried again.  OMG it was bad.  When she got aggressive with the worker, he got ready to leave so I put my shoes on to talk to him outside.  Whilst I was talking to him, my husband came outside with my purse.  Noted.  Son arrived outside a minute later.  We finished the convo with the home health worker (I asked him to notate the incident in the notes at the office), and H informed me we were going home.  Mother was railing at everyone inside the house.  Time to leave.

That was how the night ended.  S27 told his grandma at the door it was pretty disappointing for him to have his time with her end this way.

When we got home, S27 started packing (he has a 6 1/2 hour drive back home tomorrow), and H and I went for a walk. I guess while I went outside to talk to the worker, mom was lashing out at all of us, including H who has taken over doing her grocery  shopping and transports to appointments since I went back to work.  She said she wanted everyone to leave, so S27 said "well we might as well go then". H said he felt like telling her to find someone new to do her f grocery shopping.  But being a wise person, he left before he said something to be regretted later.  Instead he told her "_______, I'm not doing this", and left.

I will not change the lock box code this weekend.  H told her she has to call the supervisor to sort this out.  We are staying out of it.

I have composed an email to the mental health elderly services consultant.  Will send it off tomorrow, so she receives it Monday morning.  The supervisor will also get all the notes from the weekend staff, and I had already spoken to the supervisor on Friday to give him a "heads up".  He was speaking to the mental health specialist on Monday, and then calling me.

In a nutshell, mom is railing against a medical service prescribed by a specialist doctor.  

I will be interested to see how home care responds to this on Monday.  They are short staffed with the pandemic.  Will they simply say "refusing service", or will they start to question her competence on her own health care decision making?  It's going to be interesting to see which way this goes.

I can't imagine what mom felt and went through after we left.

All I know for sure, is that she constructed this entire scene, and set it up to fail.  She is self-sabatoging her own health care.  Her BPD has engulfed her.  And she thinks the entire world is against her, when in fact everyone has gone out of their way to be nice and help her.  And now she is all alone because she has pitched her home care out the door, and we had to leave to protect ourselves from her abuse.  

Sadly, I predicted the whole episode this afternoon.

It's just awful.

Interestingly, I did a bit of research on Parkinson's and delusions this morning.  Parkinson's is associated with systemic problems, which mom has almost all of, as well as delusions, anxiety, and depression.

She believes she should still be able to drive.  She believes she can put her own drops in.  She believes she can fly to a nurses reunion in a year. She believes that the doctors are lying to her about Parkinson's, and instead she has "old persons tremors". Delusional?

Thank you all again for your thoughts, ideas, and support.  

[Notwendy]

I don't know what is specific to Parkinson's but I have read that anger at becoming more dependent is common in elderly people. However, BPD ( and possibly her Parkinson's) could be making this over the top. I recall assisting my mother in law in bathing and dressing and she snapped at me. This was very unusual for her. She became more likely to get frustrated and angry as she needed more assistance. But this was nothing like my BPD mother.

One reason it was less emotionally difficult was that she already had a loving relationship with her family. She's got co-dependent traits. Her usual self is to avoid upsetting people and while co-dependency has its own issues- she has a sweet demeanor. So snapping at me came out of the blue but didn't have the emotional impact of BPD mom doing it.

I think you are doing the right thing by notifying your mother's health care team and no doubt, the home health will make a report too. My BPD mother has gone very close to the line of being deemed unable to make her own decisions. Home health workers are like a revolving door. Either she paints them black or they quit. She's also been non compliant with medicines. At one point a conference was arranged with us over her need for assisted living. I think she realized that was the line- cooperate with the medical team or go to assisted living and so far she's avoided that.

The problem is- the way your mother behaves with home health is how she also will behave with assisted living help. This is one reason I don't want to push the issue with my mother as I think she would not be cooperative with the staff.  Needing more home care though is expensive, but this is what BPD mother chooses.

Your H showed a lot of restraint by not speaking back to your mother and I am impressed that he held the line with the door code.

I think your mother is at the point of being deemed not competent to make her own decisions. If she's unable to accept care at home, assisted living may be her only choice. But when this was presented to BPD mom, I think she went along with the staff in order to avoid it. Does this mean she's following their recommendations? Not all of them. She smiles, agrees, then does what she wants, but she also seems aware to not do it too much.

[Mommydoc]

I am so sorry. It is awful and you did predict it. I hope you know there likely wasn’t anything you could have done to prevent it. It sounds like you are stepping back to allow the home care agency to deal with it? That is a wise approach.

My mother has advanced Parkinsons and Macular Degeneration but not BPD. She has experienced some of the psychiatric manifestations with delusions and hallucinations. It was very difficult, but it was pretty obvious to everyone when she was “disconnected” from reality.  I could often help her find her way back. Medication helped a lot. These diseases and symptoms manifest differently in everyone, but NotWendy may be right that the BPD is probably amplifying much of this. Your mother is clearly  not facing or accepting the reality of her circumstances, but at least from what you have shared, it sounds like she is in extreme denial rather than truly delusional. Her BPD is  a factor. Medication may not help in your mothers circumstance.

I know you don’t want your mothers MD to progress for very good reason.  Though the drops slow the progression, they don’t prevent or cure it. I wonder if there is a point where you accept that her BPD might end up be a contributing factor in a more rapid progression of her MD. I believe my fathers depression hastened his cancer death, for example, as he lost the will to live. I couldn’t prevent that. Perhaps her BPD hastens the progression of her visual loss. You may not be able to prevent that. Support the home care team and medical team, but recognize they may not be able to find a solution that assures she get all of her medication consistently. They will continue to do their job to the best of their ability, and it is frankly much easier for them to deal with her. 

I am so grateful that your husband and son were there and handled themselves so well. I love how he took over, brought your purse out, and  you took a walk together afterwards. You are so fortunate to have a strong “Team Methuen”. Just know we are also supporting you from a far. Hopefully today you can have a restful day, and let go of any expectations you have of yourself to manage this situation. It will be interesting to see how the home care team manages it. Let us know.

[Methuen]

Your mother is clearly  not facing or accepting the reality of her circumstances, but at least from what you have shared, it sounds like she is in extreme denial rather than truly delusional. Her BPD is  a factor. Medication may not help in your mothers circumstance.

I am so interested in understanding the medical difference between denial and delusion.  From a lay persons perspective, her belief that she could still drive, that she doesn’t have Parkinsons, that she can give her own drops, and that she could travel to her nurses reunion a year from now, seems very delusional.  She has to be in living some other reality, ( maybe the reality of a younger version of herself?), because the actual reality of her condition is medically documented by various specialists.

The drops aren’t for her MD (macular degeneration) per se.  They are prescribed by her ophthalmologist as a result of debris remaining at the back of her eye as a result of an endopthalmitis infection that grew after an MD shot last October.  Her ophthalmologist wants her to get these drops.

I’m not seeing that mom has awareness or understanding of why she needs the drops.  The only thing she seems to care about is giving them to herself.  

My H and I were already outside the house last night while our son was still at the door with her.  He reported she said she knew the drop had not gone in the eye.

I guess I’m struggling with the whole concept of competence.  She isn’t logical.  She doesn’t seem to understand the reason for the drops.  She can’t accept help to have the drops administered.  

When my father had his Parkinsons and was still living at home, mom refused receiving help in the home with him too.  She wanted to be seen as doing everything for him.  But she couldn’t handle the stress of the responsibility, and was abusive.  It was awful.  I had to disclose to my dad’s case worker that mom wasn’t coping.

The BPD does amplify everything else.  It’s undiagnosed.  What does it take for home care to see it?

The option is to just drop the expectation of the drops.  Let her suffer the consequences of that decision? Now that she has thrown home care out of her house, she is also not getting safety checks.

Sabatoge of her own health and safety?  In her advanced health condition, she has the right to do that?

If yes, it would be good for me to know that.

[Notwendy]

I think Mommydoc makes an important point- a person's general health is influenced by a number of factors. I knew a person with autism who had other health problems. The anxiety from autism caused him to eat compulsively which complicated his diabetes. However, he enjoyed his independence and would have been miserable in a situation where he was more controlled.

BPD mother is not compliant with some of her care and would be better off in assisted living, but it's not what she wants and she would not comply with the staff there either.

Mental health and physical health are connected. I have also found that my mother's medical team is better at working with her than I am.

[Methuen]

So are we saying I should have changed the code on the lock box, so that home care can’t enter? 

If that’s the consensus, I could go do that today. 

[Notwendy]

No- that's on her to do if she wants to do that.

For you to do that is enabling her to sabotage her care. The idea of letting her be in charge of what she's doing is- if that's what she wants to do- then she can figure it out.

You don't want to be complicit with a decision that isn't in her best interest.

Let's use the person with diabetes as an example. If they want to eat a big piece of cake- it's up to them to get the cake. You would not go get the cake for them.

Has your mother had a full mental health evaluation to asses her mental status and if she's legally competent?

[Methuen]

Thank you NW.  It’s all very uncomfortable and very complex.  And it often seems to happen on a weekend.

[Mommydoc]

Hi Methuen,
I definitely think you and your husband did  the right thing to not change the code. I think you should continue to do everything “in your power” to support your moms treatment plan and the home care and medical team. The question for you is at what point do you accept her self sabotage as part of her disease. At what point do you say I have done everything I can do?

I am sorry to create confusion. Re the difference between denial and delusions, there are probably a lot of definitions and it is probably on a continuum such that extreme denial is equivalent to delusional thinking; your mom is likely pretty much there.My definition of denial is I am capable of comprehending the reality of a situation, but because I don’t like that reality and what it means, I deny it and hope it goes away. (Denial is a common coping mechanism that pretty much all of us utilize at times). Delusions are insisting something is real that is not real. For example, my mom could see me, recognize me, but she was convinced that “someone had kidnapped me, and the person who looked like me was an imposter”. She was in a delusional state, but certain mannerisms she associated with me would help her recognize me as me and  back into reality.  In her case, medications helped tremendously. My worry is that your mothers BPD “Emotional brain” is so heavily overriding her “Logical brain” that she can’t accept her reality which is impacting her decision making. I completely agree with you that she is making poor decisions and likely not competent to make her own decisions.  One thing the medical team could/should do is order a psychological evaluation to determine both her cognitive and psychological state. That would help establish whether there is a treatable component and can also help determine competency for medical decision making. I am not sure if your mom would do better in assisted living or not, but I think it would be much easier for you and your husband, and it could be better for your mom by creating more structure, stimulation and consistency.

Your journey is a tough one. I am amazed at how well you are navigating it. Thank you for sharing.

[zachira]

Methuen,
My heart aches knowing that things are getting worse with your mother as you have feared they would.

One of my aunts had Parkinson's and many BPD traits. The home health care workers quit because of her demands. My aunt kept insisting that her daughter who was working full time and a senior citizen herself be her full time caretaker. I was truly puzzled at the time how badly my aunt was acting; a family friend whose father had Parkinson's told me Parksinson's changes peoples personalities and about how hurt she was by the changes in her father's behaviors when he had Parkinson's. Eventually my aunt went to a nursing home. She was the most able bodied and mentally aware person there, and could have been in assisted living if it weren't for her behavior. My cousins were told she was the most difficult resident that they had to deal with. When my cousins tried to hire a lawyer to take over her finances, my aunt hired her own lawyer. After my aunt died, there were a couple years of back taxes and large fines to pay on the estate, because no taxes were filed while she was in the nursing home. Unlike your mother, my aunt did agree to go to the nursing home after she was evaluated by a state agency which concluded she qualified for being in a nursing home.

I don't know if this story about my aunt is of any help whatsoever. I feel for you and what you are going through. I am hopeful that now you can get the legal means to be in charge of your mother's medical care and her finances, though know it can be very challenging to do so. You and your family did the right thing by not putting up with her terrible behaviors. Based on my own experiences with my BPD mother who died in her home and got my brother to take care of her with some outside help, I don't know if you can do anything to stop the apparent need of your mother to want to be in complete control and the shame she feels having others outside her immediate family see how badly she behaves.

[Methuen]

This morning I called the supervisor and explained the incident Saturday night which lead to us leaving her house.  Home care workers don’t seem to document the incidents when they call me, so the bosses are under the impression  mom is charming. The  negative reports from the workers last weekend were deemed out of character for her, and they decided to test her for a UTI.  

I asked them how they were going to explain to her the need for that test?  

They came up with a plan.

I also demurely pointed out that we were accustomed to this behavior, and the most surprising part was that she had a meltdown with someone who wasn’t family.  She’s had meltdowns with other workers, but sadly they don’t  document it ( instead they called me).

Late today mom called me.  I couldn’t believe she made the first move.  She was incensed at the urine test, and assumed she was being tested to see if she can clean herself adequately.  

She railed against home care to me in her phone call today. At least it wasn’t me she railed at. She explained her rationale for why she can do her own drops, and her rationale for why she doesn’t have Parkinsons.  I gently challenged her on the Parkinsons.  I had to.  She was irrational a few times, and contradicted herself a number of times.  Shocking how she  can blame others for the things she does.  She doesn’t hear herself.

The supervisor told her  he would speak to her ophthalmologist to see if she could put her own drops in.  That is going to be interesting to hear that response.  

Mom has of course decided she doesn’t care what the response is because whatever happens with her sight loss would be better than having home care come to her house 2X a day.  

It is going to be interesting how home care responds when she insists on no more visits.

I’m expecting the worst- that they will just comply with no safeguards in place.

We will be leaving on a short trip soon, and following that will be out of town for 10 days.  

Meanwhile, she’s groomed a flying monkey, who took her out for lunch today.  She’s over-involved.  

Mom’s  saying she’s done with home care.  And she doesn’t have Parkinsons.  She definitely has Parkinsons including all the systemic symptoms that come with the disease. Only a mentally ill person could deny it against all the evidence.  

She is quite a sight.  It would be so easy to have compassion and be supportive with someone who has the grace to accept the truth about their illness, but I can only feel pity, embarrassment about her behavior, and a feeling of revolt in the pit of my stomach.  She used to cook herself healthy soups to eat and freeze.  Now she boils hot dogs because she doesn’t have the strength to cook for herself any more.  And there’s always dried poop on the back of her toilet seat.  She can’t see it.  And she was just do mean to the worker the night we were there.  I apologized to him outside the house and asked him to document what happened.  He didn’t.  I guess they’re probably either used to such behavior, or so busy with short staffing that they don’t have time to document. 

I’m expecting them to say there is nothing they can do, but that’s probably me seeing the worst  case scenario.

[Notwendy]

Hi Methuen-

This situation reminds me of when the social worker told me my parents were "legally competent to make their own bad decisions". I don't know exactly when that line is crossed in terms of whether or not one takes legal guardianship of a person or the state does, or what evaluation is needed to assess that.

I know that with my father, his nutrition was compromised by his limited food preparation, but he didn't want additional help at home. It's interesting that when he was ill, my parents mostly refused people coming to the home. Now, my mother wants the help, but isn't happy with most of them and also engages in her drama with them.

A large component of this is control and protecting BPD mom from discovery of her issues. I suspect that some of the helpers she dismissed showed concern about her behavior or some quit. I don't know for certain. She was working with a social worker but as soon as the topic of assisted living came up, that social worker seems to be out of the picture- either my mother's decision or the social worker felt she did all she could for her.

In order to avoid assisted living, BPD mother goes along with the helpers when they are there, then does what she wants. She's said things such as the nurse comes to organize her medicine, then after, she puts it all back where she wants it. Since she's able to demonstrate she can take pills on her own, there's no need for someone to help her with that.

I think some of the home health workers have reported concerns about her however, she knows how to pull it together with people. Home cleanliness and personal hygiene are not an issue- she has someone to clean the house and she can take care of herself.

There are some differences with your mother. She is not able to take her medicine on her own- she doesn't have the motor skills to put in eye drops. It also appears she has some personal care difficulty with cleaning and hygiene. She has behavioral issues - but with the eye drops, it's directly impacting her physical well being.

I really don't know how they can intervene. If she were to be deemed incompetent and have to be in assisted living, she may not cooperate. Nobody could put eye drops in her if she won't cooperate. I don't know what the line is between someone having more control- even if it's not in their best interest vs being in assisted living where they don't want to be. I wonder if there is some way to mentally assess her again.

[Mommydoc]

Methuen, I am so glad you have plans to be away. With all the uncertainty of this situation, you are doing a great job in navigating and maintaining healthy boundaries. Like you, I worry, that the home care team may not be adequately documenting and assessing the issues. The decline you describe is beyond her BPD ( the BPD makes it harder to deal with). It is not uncommon with aging and is consistent with cognitive decline. Both my PGM and father, neither of whom had BPD, resisted Assisted Living, well beyond the point where it made sense to stay in their home.

I wonder if there is some way to mentally assess her again.

As her daughter and caregiver, I encourage you to advocate  for a cognitive and mental health evaluation. That would be very helpful in determining next steps. It might also be good to get a social worker involved to assess her home environment objectively. The home workers see a lot of bad situations and from what you describe may not feel empowered to address her circumstances, so bringing others in to objectively validate what you already know and recognize will help document and support the next steps.

[Methuen]

Has your mother had a full mental health evaluation to asses her mental status and if she's legally competent?

No. But I've suggested it to both her family doctor and home care, with a rationale and evidence from our day to day experience suggesting the need.  Planting seeds is all I can do.

So since the blowout at her house when we were visiting with our son (when home care came to do her drops), my H tasked himself with talking to her about her behavior that night.  We have this idea that if she isn't "checked", she will think her behavior is ok and just keep getting worse.  It's kind of like handling a child's misbehaviors.  He handled her well, and recorded the whole thing, so I was able to hear it.

Of course it won't change anything.

But temporarily, she agreed to keep letting home care into her house (translation: demanding we change the code on the lock box has temporarily ceased).

We leave tomorrow for 3 days, and we will also be gone again the last 10 days of the month.  This morning I received this text:

"Good morning. I would be happy  to house sit for you. I could sleep in the sunroom with my sleeping bag.it would be a break for me too.”

On the floor in a sleeping bag?  This is ludicrous.  And complete and total b_ _ _ s _ _ _.  She can’t even get up from the floor anymore. If she falls down, she's staying there until someone finds her.

Last night she called me on the phone and started ranting about not wanting home care again (after H's conversation with her), and accusing home care of coming to her just so they can charge her $ for it.  She was getting "rolling" with her rant, and I stopped her in her tracks and told her "that wasn’t true, and if she was calling to say something nice it would be ok to talk, but if she was calling to complain I didn’t want to hear it any more.  I am done with the complaining."   It was a brief conversation.

Today the above text came in.  She can’t even walk down the steps of her own house without assistance, so she never goes outside in her yard alone any more. How’s she going to “take care” of someone else’s house?  She can't even cope inside her own home. She's never used a gas stove. She doesn't even cook for herself any more.   We don't have grab bars in the bathroom.  We have stairs.  I realize she is just trying to “draw me in”, but I am at a loss for a good response to this.

Maybe:  "sounds like you are thinking you are 20 years younger mom!  “We have it all arranged already.  Have a good day”

?

I'm wondering if it's time to gently push back with a bit of humour.  If I don't do something, will the behavior continue or get worse?

I don’t even want to say thank you.  It wouldn’t feel genuine.

When I showed the text to my H, his jaw dropped.  This is outside the boundary of a "sane" thinker, but to put it in print like that?  I can't even show it to her home care supervisor, because on the surface it looks like a kind offer, and her supervisor already thinks she's a "nice lady", although I have disclosed plenty of evidence to suggest otherwise.  

I was p _ _ _ _ _, but calmed myself down pretty quickly, and started to think rationally about possible responses.

Could use some feedback ASAP as we leave tomorrow.  Any advice is welcome and appreciated.

[Riv3rW0lf]

I would just say :

We have it arranged already. Have a nice day.

And would drop the humour, as BPD are sensitive and it could be read as you laughing at her (with reason if you ask me! But she probably won't like it very much, ). No bait, no draw-in, no recognition that what she offered doesn't even make sense.

My guess is : she knows it doesn't make sense, that she couldn't do it, and is looking for you to point it out so she can victimize herself.

[GaGrl]

I agree...BIFF, without humour.

[Methuen]

My guess is : she knows it doesn't make sense, that she couldn't do it, and is looking for you to point it out so she can victimize herself.

Of course you are right.  It's just so d _ _ _ tempting.  

“We have it all arranged already.  Have a good day” is what I sent.





 

[Notwendy]

Methuen, I am not an expert in mental illness or dementia in the elderly but from friends who have taken care of elderly parents- this thinking that it's many years ago seems to be common. They may be speaking to an adult child as if the child is much younger or think one family member is another one.

My BPD mother may have distorted thinking due to her emotional state, but she's aware of time, place and who she is talking to. ( the basics of mental competency). She's aware of current events.

I think your mother's thinking is beyond BPD and sounds more like she is becoming disoriented. Her stating she can use a sleeping bag, and take care of your home alone seems like that.

[Riv3rW0lf]

I agree with Notwendy that this is a real possibility.

In both cases though, the good news is the best way to handle demantia, in my experience, is to go along with whatever they think is true and to not contradict them. (Source: have worked 6 years with elderly, most of them with dementia or Alzheimer)

But maybe another point to bring up with her healthcare provider.