Elderly BPD mom and independent vs assisted living

[Methuen]

Hi everyone.  I'm doing well, but there was a little event with mom yesterday, that fits under the umbrella of a much bigger problem, and I thought I would pick your brains.  Mom is almost complete deaf (except when she wears her hearing aids), going blind with macular degeneration, and has a litany of other issues including heart, bp, many multiple mini-strokes over the past 5 years, osteoporosis, stomach (pantaprazole for life), lifelong body image issues (anorexia), anxiety, uBPD, vertigo (Meniere's), mobility issues (uses a walker) and now, has been diagnosed with Parkinson symptoms (the right side of her body has a full-time resting tremor) The Parkinson symptoms are probably related to her stroke history.  With this history, one would think I have nothing to be afraid of when it comes to my mom (she is physically weak), but quite the contrary is true.  When she "rises up" and her anger boils over, she has a presence the size of Africa, and she can annihilate me. She is 84, needy, and lives independently.  (She pressured us for years to live with us.  My dear H told her that was never going to happen).  After a fall on the grass a year ago, she fractured 4 bones.  Before that, she had other falls, and different fractures.  She has had 4 surgeries in the past for hip and knee replacement, and a back surgery for spinal stenosis.  She has a "lifeline" necklace where she can push a button, and emergency help comes.  It has a permanent place on her bedside table.  She refuses to wear it.  She had a RAI assessment a year ago, and qualified for assisted living, which has a 2 year waiting list.  She refused to consider assisted living.  She was deemed cognitively fit after the test.  She has a family Dr.  Her spirits through Covid have been surprisingly ok, thanks in large part to her antidepressant, and me "learning some things" about navigating a BPD relationship.

She gets regular eye shots (both eyes) for macular degeneration. Yesterday, I drove her to her appointment to get these shots shots.  She had arranged for me to pick her up at 6:50am.  I arrived early at 6:45am but she was still sound asleep.  As it turned out, she had set her alarm clock for the time I was to arrive to pick her up, and not for the time she needed to wake up to get ready.  She sometimes gets "mixed up", but overall her cognitive ability is decent for her age.

Me: I let myself in with a key, and made my way to her bedroom, where I heard her Big Ben clock start sounding (as I arrived) on her bedside night table.

Me: "Mom, Mom! Today is your eye appointment. It's time to go."

"Mom, dazed and staring.  Oh!  I can get up".  She hauls herself up and makes her way to the bathroom while I go wait in the living room as she gets dressed.

She wants me to wait for her at the clinic, while she has her appointment (45- 1hr appt), but I reminded her I needed to go home and get ready for work. I pick her up after her appt, and drive her back home.  We chat in the car, and she tells me her eye doctor gave her a referral to the Institute for the Blind.  She wants something to help her "read", which she can't do anymore.   

Me:  "that's great mom!  It's so wonderful that we have that service" (institute for the blind).  I accompany her to her front door, and unlock it for her.  She walks inside, starts closing the door, and says:

"I am going back to bed.  You can go now".

I was dismissed.

 

I was able to brush off the dismissal, and complete lack of thanks from her, and finish getting ready for my work day.  I have come to expect nothing from mom, and I am never disappointed.  I got on with my day and had a great day at work.

Mom is a disaster waiting to happen on so many fronts.  In my mind the biggest risks are her falling again, or having a massive stroke, but there's plenty of other issues that could also cause a health "crisis", where she was unable to live alone.

Anybody can see (on one of her good days) that she shouldn't be living alone. I currently buy her groceries, manage her bank accounts, and run her errands (2 contacts per week is manageable for me). H mows her lawns, and looks after her home maintenance issues.  We both help her with her phone and computer problems, and anything/everything else that comes up (from light bulb changes to ordering "undies" on line for her sister who lives 800 miles away).  I have back issues, and free time issues, so she hires a housekeeper, and a gardener (landscaped beds). 

My question:  since she refuses to put her name on a 2 year waiting list for assisted living, are there things I could do to manage this situation any differently, or do I continue to wait for the inevitable next health crisis to arrive, and simply deal with it when it comes?  She has found all kinds of "not nice" ways to communicate that she is "never going to be "stuck in a home" for old people, which assisted living is not.  She suffers big abandonment issues. In my opinion, she is unable to talk rationally about anything big like this, which stresses her.  She is very afraid.  My T suggests we bring up the topic of assisted living to her.  I am reluctant because I can anticipate how that will come back and bite me viciously, if not the same day, at some point down the road. Ideas?  Thoughts? Advice on how to approach this?  I definitely don't want to "rock the boat" with her, as the current status of my relationship with her is "stable" thanks to the tools I've learned from this website, books, and a T.  Any strategies for how to support her to plan for her future?  Anything more I could do, or do differently?

 





 

[zachira]

I am sorry to hear about your new and ongoing challenges with your mom. I think sometimes the only solution with a really disordered parent is to hire in-home health aides for as many hours as you can. With my mom with BPD, we did this, and she was horrible to the home health aides at first, very unappreciative of everything they did for her, and suddenly sent them home early by abruptly dismissing them. I got after my brother for allowing mom to cheat these wonderful workers out of pay they badly needed. Eventually mom adjusted and she enjoyed the attention and endless kindess she received from some amazing home health aides. Can you set a boundary with your mother and tell her you and your husband can not continue to do all that you are doing and she must hire some additional in-home help right now? I am guessing her biggest fear about being in assisted living is she will no longer be in control, and will never go to an assisted living or nursing home unless you eventually have an evaluation that says she cannot live alone. Of course, your mom has not given up on living with you and your husband, so I hope you have things set up so she will go immediately to a facility and not stay with you when she legally has no choice. (You can ask professionals who work getting the elderly into assisted living and /or a nursing home, what you can do now, and set up for the future. In my experience, they are very familiar with situations like yours.)

[GaGrl]

Other than the facts you are still working, my mom isn't full-fledged BPD, and my mom is indeed living with us...you are living my life and my concerns. I am sorry, because I understand the ongoing stress. I just finished a month that must have had at least 2-3 medical appointments per week. Mom does the eye injections, and she takes coumadin, which requires careful management and testing and has its downsides. I have become terrific at bandaging (skin years and dermatology surgeries)!

I have a caregiver who has been working with my mom for years -- first for housecleaning and now just caregiving. I couldn't do it all myself.

My suggestions would be 1) increase caregiver assistance that can provide help in hours that you can't -- like doctor appointments that don't require her to rush in the mornings, and then 2) look into senior housing that starts with independent living apartments but also provides the ability to move to assisted living and eventually even memory care if needed.I

We all know, though, that there is only so far you can go against her wished. But the Meniere's disease and macular degeneration are VERY dangerous.

[zachira]

I had another thought that might be helpful. I have three elderly relatives with strong BPD and NPD traits, now deceased, who were extremely difficult and uncooperative about gettting care at the end of their lives when they were sick and no longer able to care for themselves. It seemed to work with all three of them to have different people tell them the same things over and over again until they agreed to do partially or all of what they needed to do. I was at one point being given way too much credit for getting one relative to get needed medical care when she had been asked to do so probably hundreds of time by different family members and medical professionals. Another time, I was painted black by the same relative for trying to get her to go into assisted living when her son was talking about ending his life because he just couldn't deal with caring for his mother anymore. The relative complained bitterly about what I said to another person then agreed to get some home health care even though this had been suggested numerous times before by this person and others. So as difficult and frustrating as it is, having many people tell your mother certain things over and over again may get her needed care, and provide you and your husband with some relief. I think we just underestimate how impaired some people are and the lengths we have to go to accomplish things that would be pretty simple with a normal person.

[Notwendy]

I can empathise with your situation. When my father was ill, I also tried to help out and it was constant emotional and verbal abuse on the part of my BPD mother.

My mother is now an elderly widow on her own with in home health care. With both my parents, as long as they were considered mentally competent, they were in total control of their decisions. My BPD mother is too. She seems to be in constant conflict with her home health care providers, it appears she reinacts the same kind of drama with them as she did with her immediate family.

Unfortunately we have learned that we can not be proactive with her in terms of considering a place where she can have the care and support she needs. She's in charge right now.

Please don't take your mother's behavior personally. It's her disorder that affects how she perceives things. It's also sad. I think all of us here with elderly mothers wish we could be helpful to them. I think the best we can do is do what we can, and try to hold on to the truth- we are trying to help- no matter how it's interpreted.

[Methuen]

the only solution with a really disordered parent is to hire in-home health aides for as many hours as you can. With my mom with BPD, we did this, and she was horrible to the home health aides at first, very unappreciative of everything they did for her, and suddenly sent them home early by abruptly dismissing them... Eventually mom adjusted and she enjoyed the attention and endless kindness she received from some amazing home health aides.

This gives me hope.  Thank-you.

I am guessing her biggest fear about being in assisted living is she will no longer be in control, and will never go to an assisted living or nursing home unless you eventually have an evaluation that says she cannot live alone.

Like you, I believe this is about her feeling that she is losing control if she goes into assisted living.  Absolutely.

Of course, your mom has not given up on living with you and your husband, so I hope you have things set up so she will go immediately to a facility and not stay with you when she legally has no choice. (You can ask professionals who work getting the elderly into assisted living and /or a nursing home, what you can do now, and set up for the future. In my experience, they are very familiar with situations like yours.)

I have spoken privately with her family doctor about my very real fear that an emergency room doctor would say "in front of my mom" that she was being discharged, and then asking me if I could care for her (in front of my mom).    My family doc assured me that no emergency doc would ever do that, or discharge her with no after care plan.  While I wish it was true, I don't trust that message (especially since it already happened once).  I have also spoken to both mom's case worker, and an elderly care consultant at the same location, who advised me that often it takes a crisis where the elderly person is told in the hospital that they can no longer live independently, and the system puts them into care.  However, these people dropped the ball when it came to having conversations about planning with her.  That falls on me.

My suggestions would be 1) increase caregiver assistance that can provide help in hours that you can't -- like doctor appointments that don't require her to rush in the mornings, and then 2) look into senior housing that starts with independent living apartments but also provides the ability to move to assisted living and eventually even memory care if needed.

 1) we have a transportation service here for the disabled.  I am going to look into that and get some facts.  I think it needs to be booked 24-48 hour in advance, and I'm not sure what their hours are.  Mom would paint me black if she had to use this (abadonment again), but I can't control that.  If I'm working, I'm working, and it's just not possible to be in two places at once. 2) I live in a rural area so we don't have a facility that starts with independent living.  She does have an eye on a small "community" of condos where elderly people live independently.  She has several friends that live there already, which makes this an acceptable option to her.  When a unit becomes available, she will become emotionally undone because she loves her current house so much.  The condo would eliminate the need for a gardener, and condo maintenance I suppose (leaks and roofs and such), but there would be no supported living.  My best plan right now is to wait for a door to open to the opportunity to bring up assisted living, and offer to take her for a "showing".  We already did this with my FIL.  It would let her see the place, and then give her an option to make her own decision between the condo and assisted living.  It's a great plan, except that I expect her to refuse the offer to view assisted living, and get mad at me instead for even suggesting it.

So as difficult and frustrating as it is, having many people tell your mother certain things over and over again may get her needed care, and provide you and your husband with some relief. I think we just underestimate how impaired some people are and the lengths we have to go to accomplish things that would be pretty simple with a normal person.

  Mom finds ways to drive home her strong messages to ME, in underhanded ways.  "Jane told me she would rather die than go into _____ place."  "Sheila's last words to her son were "Don't stick me in ______ place".  "Janet told me she's never going to ______ place".  "Betsy says I shouldn't be grocery shopping any more."  These are all her best friends.  While these messages are coming through my mom's filter, I can't trust her friends enough to have honest conversations about how mom is doing.  I have doubts they would support the idea mom could benefit from assisted living, because they all have their own fears.  Plus, I can't trust that my conversation with the friend wouldn't get back to mom.  I have had conversations with her doctor privately.  Mom doesn't want my help going to Dr appts (her need to control), and every time she comes back from one, she reports to me how her Dr tells her how well she is doing.  

Please don't take your mother's behavior personally. It's her disorder that affects how she perceives things. It's also sad. I think all of us here with elderly mothers wish we could be helpful to them. I think the best we can do is do what we can, and try to hold on to the truth- we are trying to help- no matter how it's interpreted.

...or by whom.  Thank - you for this.

[beatricex]

Methuen,
Oh boy, this is a tough one.  While I don't have any advice, I truly feel your struggle and am here to listen.

((methuen)

b

[Notwendy]

I understand your situation. My mother is at her best with her friends and family and has also set the stage for how they think of me. I imagine they think I am a terrible daughter for not bringing her to live nearer to me or with me. Like you, that would subject me to her manipulations and verbal abuse. My husband won't allow it either because he has seen her behavior.

I am sure it is embarrasing for her to have her friends or family know why her kids aren't stepping in to bring her nearer to them so they need to think we are terrible people.

Both my parents have been invested in making sure nobody sees the side of my mother that her immediate family sees. Her friends and family think she is wonderful. Like you, I don't trust them to tell me the truth about how she is doing and everything they learn about me and my family gets reported back to her. My father was the same way- if I said anything to him it was shared with her.

Validation came when BPD mom began needing assistance at home and she played out similar drama with her helpers. Just like our help is inadequate she is critical of them too. It helped me to not take her behavior personally when I see that she relates in a similar manner to people who get close to her as well. This is a sad part of BPD- it shows up most in the close relationships with the people who are more emotionally invested in them and so the behavior is hurtful to them. So her home health team is now aware that she has BPD and understand that I think it is best for all of us if a trained home care provider helps her.

[Methuen]

Both my parents have been invested in making sure nobody sees the side of my mother that her immediate family sees. Her friends and family think she is wonderful. Like you, I don't trust them to tell me the truth about how she is doing and everything they learn about me and my family gets reported back to her.

Thank you for sharing.  There is some solace in knowing there are other people who truly understand, even if there are no solutions or treatments for our pwBPD.

Validation came when BPD mom began needing assistance at home and she played out similar drama with her helpers. Just like our help is inadequate she is critical of them too. It helped me to not take her behavior personally when I see that she relates in a similar manner to people who get close to her as well. This is a sad part of BPD- it shows up most in the close relationships with the people who are more emotionally invested in them and so the behavior is hurtful to them.

Agreed.  It is just so so sad for all involved.

I guess I feel like I should be doing more for her.  I would like to ,but I also know if I try, we will fall into the same cycle we have been in for so many years.  Right now I have found an equilibrium with her; I provide just enough support to keep her going (buying groceries, doing her banking, taking her to appts etc), but only about 2X/week, which seems to also be enough distance to keep her from emotionally abusing me.  It's just so counter-intuitive for things to be like this with someone you care about.  But the more time I spend with her (like when she was immobile with fractures after her fall and needed help), the more abusive she gets.  On the other hand, if I spend less time with her in daily life, and let her believe she is independent, she has "just enough stress" to be in her emotional comfort zone.  "Distance" perhaps makes her feel safer emotionally, because the more time we spend together, the more fearful she becomes of being abandoned?  I don't know.  To complicate it all, she wants to live with us, to be taken care of.

I've lived my whole life with the MO of preventing problems before they happen.  I just don't know how to help her plan for her future, when she is too afraid to think about it, and rejects a 2 year waiting list for assisted living, despite qualifying with a litany of health issues that make her a risk to living independently right now.  I guess it's her choice.  Accepting that choice is just brutal, because ultimately it is I who is responsible for her when her next fall or health crisis occurs.  And I am just so afraid that some emergency room doctor will ask me in front of her if she can stay with me.  I will say no, that I am unable to meet her nursing needs, but in her eyes, I will have abandoned her. 

[Notwendy]

I've lived my whole life with the MO of preventing problems before they happen.  I just don't know how to help her plan for her future,

I wonder if because we grew up with chaotic parents that we have this tendency to step in and take a proactive approach for their well being. While this is a "normal" for elderly parents- at some point adult children step in to assist and the roles begin to reverse- our roles in the family included feeling responsible for their feelings earlier.

When my father began to get ill, we kids tried to step in too with the idea of some sort of residential care plan. I would say this was not entirely altruistic. It's the same dynamics that the more we help, the more my BPD mother treats us poorly. While we wanted to see Dad get the best care, we also knew this included support for my mother as well. The dynamics in their relationship shifted. My father was both the emotional and hands on caretaker for my mother. He did everything basically. Now, he was unable to do this and also needed care himself. But they dismissed our suggestions and the situation unravelled.

My best advice is to stay firm to your own moral code. I would make the best effort possible to make the best decision for my mother's well being- not only for her but for me. My moral code is for me. However, I also have the right to not let people be hurful to me. It seems to me you are doing a lot, even if your mother doesn't acknowlege it.

I called social services to see if I could intervene  and what they told me was that, a long as they were deemened mentally competent, I could not. I will share what she told me "your parents are legally competent to make their own bad decisions". My mother has BPD, but she is still technically legally competent and she will do whatever she decides whether I think it's a good idea or not. Technically you are not responsible for your mother's decisions.

[Methuen]

"your parents are legally competent to make their own bad decisions". My mother has BPD, but she is still technically legally competent and she will do whatever she decides whether I think it's a good idea or not. Technically you are not responsible for your mother's decisions.

Thanks NotWendy.  This helps.

[GaGrl]

 Thanks NotWendy.  This helps.

I can't tell you how many times I've depended on this phrase since I first heard it! I'm fact, I just had a terse conversation last night with my mom about her newly changed medications, and this allowed me to walk away from the conversation. (Of course, I didn't say it out loud!)

[Notwendy]

I am so glad that phrase has helped others. It helped me a lot when the social worker said it to me.

As a parent, I was used to making sound decisions in the best interest of my children and also believed I could help make decisions in the best interest of my parents, but they are not my children and were not about to allow me to do so. It was frustrating. I had no intentions of trying to control them, I was just trying to be proactive as mentioned.


I have had to accept that she's in charge of her decisions, no matter what.

[GaGrl]

My mom is a challenge now because she wants to go out and about more than I think is safe with Covid-19. Her church has limited services,and no one has gotten sick (the minister's wife is an RN, and their protocol is strict). But she had a Christmas shopping list that was ridiculous, and I had to sit down and go over how much of it could be ordered and delivered or picked up. We've nixed both Thanksgiving and Christmas family dinners with extended family (too many college age cousins). I've pulled out of our neighborhood Festival of Lights.

It doesn't make her happy. I use SET a lot.

But when she's being especially stubborn, I have the go-to of "competent to make her own bad decisions." That sounds something like. ..

 "I know you want XYZ. I really don't think it's a good idea, and I don't want you to do it. But if that's what you decide, I'll respect your decision."

 But remember, my mom has a few BPD traits, so I don't get full BPD blow-back.

[Mata]

I am so glad that phrase has helped others. It helped me a lot when the social worker said it to me.

I also wanted to say thank you for this phrase!  I had a situation come up yesterday with my BPD mom and it popped into my head, and helped keep me grounded and calm.  My mom has decided to drive 4 hours to spend thanksgiving with my brother and his wife's family.  She had a major heart procedure 2 weeks ago and is really weak.  So aside from covid concerns, I don't know if she can even physically drive that long.  She lives in an independent apartment in an assisted living community, and they do not want anyone to travel, but they can't stop her because she's legally competent.   

In the past, I would have immediately launched into "fix it" mode, doing anything I could to change her mind.  Instead, I took that phrase to heart, and freed myself of the obligation to save her from her bad decision.  I sent one text message telling her I thought it was a bad idea.  I decided I was only go to say something one time (for my own peace of mind).  I've also decided that if things go badly, I'm not coming to the rescue.  So if she gets there and is too sick to drive home, she will have to figure it out herself.  I'm still worried and concerned about her for sure, but it isn't consuming me. 

I have had to accept that she's in charge of her decisions, no matter what.

This has taken me so long to understand/accept.  But it's the 100% truth. 

[Mata]

I've lived my whole life with the MO of preventing problems before they happen.  I just don't know how to help her plan for her future, when she is too afraid to think about it, and rejects a 2 year waiting list for assisted living, despite qualifying with a litany of health issues that make her a risk to living independently right now.  I guess it's her choice.  Accepting that choice is just brutal, because ultimately it is I who is responsible for her when her next fall or health crisis occurs.  And I am just so afraid that some emergency room doctor will ask me in front of her if she can stay with me.  I will say no, that I am unable to meet her nursing needs, but in her eyes, I will have abandoned her. 

I've lived my life with the same MO, and I also struggle with truly accepting my mom's poor choices.  I think we are fighting a lifetime of our own survival behavior.  It's brutal, indeed. 

Your last sentence struck a chord with me. It's hard to put into words, but after my mom was diagnosed with BPD, I started feeling obligated not to let her feel "abandoned," because that's such a big part of the problem with her mental illness.  I wonder if your fear about this emergency room scenario, has to do with that.  I know I have a really really hard time making tough decisions that my mom will interpret as abandonment.  So trying to get ahead of problems before they happen seems like a reasonable way to stave off making these touch decisions and triggering her abandonment feelings, right?  The problem is, it doesn't work, as we know.  My mom can feel abandoned by literally anything.  The washing machine broke = no one loves her.   

So, your last sentence may be the area to focus on accepting.  She won't plan for the future, you can't make her, and the consequence is she may end up feeling abandoned.  But you are not actually doing that to her.  It would be the result of the decisions she refuses to make now. 

[Methuen]

The washing machine broke = no one loves her.  

I didn't get to her house "fast enough" to change her computer desktop background = we don't love her enough.  Or, H couldn't mow her lawn the moment she said it needed mowing = we don't love her enough.  We said moving in with us wasn't an option therefore we don't love her.  Attention + slavery = love.

So, your last sentence may be the area to focus on accepting.  She won't plan for the future, you can't make her, and the consequence is she may end up feeling abandoned.  But you are not actually doing that to her.  It would be the result of the decisions she refuses to make now.  

I know you are right.  Thanks for the reminder.