Posting to process and purge

[Notwendy]

Methuen- I understand the feeling of betraying when disclosing your mother's issues. It was a big rule in our family to not do that, to act as if there was nothing wrong and so I also don't feel comfortable when doing so.

I think it helps to consider intent. Is the disclosure out of triangulation or is it to try to attain assistance for her. I think it's obvious what yours is. Your mother needs the assistance.

[Methuen]

I think it helps to consider intent. Is the disclosure out of triangulation or is it to try to attain assistance for her.

Yes this is important.  When I was preparing what I would say to the Dr, , one of my points near the conclusion was “what kind of a daughter would I be if I didn’t inform the truth about the current state of her health and what is happening?”  It would border on neglect, unless I became her slave to meet all her needs.

On the other hand, I was raised to understand secrets and to not talk or tell or expose. 

So it was very uncomfortable telling the truth to her Dr.  It is sad that we are in rhe position where we have to do this behind their back, rather than with and beside them. 

[zachira]

You are doing what is in your mother's best interests. I hope you will also tell the doctor how you are unable to take care of your mother anymore in her home because of how stressful it is for you and how it impacts your mental and physical health. When my mother refused to elevate her leg which she could lose if she did not do so and refused to get a hospital bed for her house, her doctor stuck her in a nursing home for two weeks with the staff constantly coming by to remind her to keep her leg elevated. This was in spite of the fact that my two brothers were living with her, and mom had full control of her medical decisions. We are thinking of you and hoping for the best outcomes in your appointment with your mother's doctor.

[Couscous]

My mom feared that I would take her property…

Accusations of malicious intent really are the worst, at least for me, and is actually why I ended up on this board. But I have come to understand this kind of behavior as a sort of self-indictment, or an indirect admission of guilt of their abusive behavior. But because of their unbearable feelings of shame, unworthiness (of love, forgiveness), and a belief that they are deserving of punishment, they need a way to rid themselves of these feelings which they do by attributing them to other people. ‘I am unlovable and deserve punishment’ becomes: ‘You are unloving and want to punish/destroy me’, and no amount of validation can prevent this.

[Methuen]

Zachira I can relate to your story about your mom refusing to follow Dr orders, even at the risk of “losing a leg”. The average person wouldn’t understand and/or believe this.

Thank goodness  for this community, or we would all feel we are crazy…

[Methuen]

Oh my mother…

So mom gets home care visits at 8, noon, 5, and 9pm to get drops for her L eye.  The drops are a treatment to hopefully prevent blindness from an acute endopthalmitis infection, and also help the eye heal so as much vision as possible might return.  

Instead of feeling gratitude for these visits, she hates them.  It stresses her out. Because she hates people coming into her house, she looks for every opportunity to complain.  Anything she is displeased with becomes a reason to cancel.  She has always cancelled home care in the past after a fall, and whilst she is still in the recovery phase.  There is a pattern.

We are in a snow storm event.  Last night about 9:30, I get a panicky phone call from her home health worker.  She is apologizing to me for being late to mom’s house because she had car trouble with all the snow, got stuck, and additionally had to spend extra time with another client. So she got to mom’s late.  I don’t know exactly what happened next, Ibut I can imagine it, since the poor woman called me almost in tears explaining what had delayed her, and repeatedly apologizing. She stated she wanted me to hear from her what had happened, since she knew mom would be talking to me about it.  

Then I get this text from mom:

“I’m going to ask to. Have. Nite canceled.

Guess what ______ the phillipeno gal came nine thirty. I told her how upset and shaky I was. She takes every spot to make extra money. She is the only one who’s always late. The drop before that was four. All the others are good

Then she ended with “Happy New Year”

I marvel at how irrational BPD is.  She hates people coming into her house.  She shows no gratitude.  She doesn’t grasp that the possibility of going blind and receiving the treatment is more important than her  dislike of home helpers. 

Is she really trying to enlist me to do her dirty work for her to cancel the care of her own treatment?  She only talks about cancelling the nite visit, but I know her and I know that is just her starting point.  Her invented accusation of the woman taking on too many clients is just her super mean imagination at work to justify her toxic feelings.  The lie accusing the poor helper of untrue things makes me mad. 

The poor woman is on shift work simply doing the home visits assigned to her by a manager.  The woman is a saint.  Her only crime is being too cheerful and trying too hard to please mom. 

The beauty of the situation is that it is an example that I think demonstrates that mom is not competent in making her own health decisions anymore.  Does that seem like a reasonable assessment? 

I plan to share this confidentially with elderly services, who are the same people that will do the RAI assessment her family doctor has just referred her for.

There is a saying that’s not very nice:  “You can’t argue with stupid”. 

I would modify that to say “you can’t argue with irrational”.  In a nutshell, that’s BPD.

The craziness reminded me of Zachira’s story:

When my mother refused to elevate her leg which she could lose if she did not do so and refused to get a hospital bed for her house, her doctor stuck her in a nursing home for two weeks with the staff constantly coming by to remind her to keep her leg elevated. This was in spite of the fact that my two brothers were living with her, and mom had full control of her medical decisions.

[GaGrl]

Yes, she's repeating the pattern of firing home workers. And yes, it sounds like she wants you to do it for her...or...she's aware enough now that you have both concerns and boundaries around her care that she is carefully "feeling out" what the consequences might be if she stops the evening visit. In other words, what might Methuen do if I stop home visits?

She might have a growing awareness that she is no longer handling independent living and yet is still fighting the alternative.

This might be where you have to clearly state to her that no changes to her medical care will be done without her doctor's directions.

[zachira]

Methuen,
My mother too tried to fire the home health care workers who were wonderful kind people and tried to do everything to make her happy. I really got after my brother who allowed mom to send them home early telling them things like "I don't need you anymore." which meant they got cheated out of some of their wages, and these were people who needed the money. My brother told me that the home health workers were fine with going home early, though I did not see any of that happening when I went back a few months later.
I know you dread saying nearly anything to your mother yet there possibly could be some benefit in doing so, if only it is to let her know what the firm boundaries are that you are setting with her. Your mother gets away with what she does because she seems to pretty much always find ways to manipulate things to have everything her way. Now she is in a situation where she actually needs the home health care workers, can not so easily fire them, and that certainly makes her furious, to have to pay these people and not being able to manipulate you into being her full time caretaker. The poor home health care worker sounds like just the kind of person your mother and my mother would choose to abuse: kind and caring, wanting to please and feeling terribly upset by how badly she is treated. Talking with the agency that hires the home health care workers, and letting them know the many ways that you appreciate their different workers could help to keep them involved in providing services to your mother. These agencies are often well aware of what is really going on in situations like the one with your mother.

[GaGrl]

Most of these agencies have employees who are not only aware of what is going on in difficult care situations, they also receive training on recognizing and dealing with dementia-related behaviors.

[Woolspinner2000]

Hi Metheun,

I just wanted to pop in and send a hug.  I can tell you are so tired, physically and emotionally. Even in the midst of all the work you do, your values staying strong, the care you give, it's an uphill battle against so many things, and that is exhausting. Underneath it all you are dealing with grief too. You are losing and have lost so much, and the road ahead is long with curves in it and you cannot see your way to survive around the next bend.

Try and keep up with some self care as you can. It's good to hear your updates.
 
 
Wools

[Notwendy]

Yes, Methuen, take care of yourself.

I understand your frustration. It was similar in ways with my father when he began to need home care. I think there were several factors that made this difficult. For one, my mother needs to be in control. A home health provider has their own agenda, but the dynamics in the home were focused on my mother's wishes. Ideally, the health care provider and their patient have the same goals, but even if they do- as you have seen between you and your mother- there's the need for control.

While health care personnel are familiar with mental disorders, they also don't just go along with what the disordered person wants. They may be asking your mother to lie down, hold still- so they can get the drops in. Saying that to my mother- she'd think they were "ordering her around" and she doesn't like that.

There's also a fear of discovery on their part. The "persona" my mother presents to the world is also something she chooses. If someone is around them a lot, especially someone familiar with mental disorders, they may seem like a threat to them. There seemed to be a pattern- she'd  find something wrong with the helper, then that person would be painted black and gone. My guess is that this person got an idea of the dysfunctional dynamics.

We don't live close enough to help her with errands, and doing so is an emotionally abusive situation. She seems to need to have people help her while she is in control. Maybe it allows her to unload her emotions. It's better that someone else helps her- she likely may not react like them and they are being paid for their work.

Dad planned well for their elder years and so we are grateful she can do this. She's refused assisted living, and I think it would be an unhappy situation for all involved, even if it would meet her basic needs. It would not meet her emotional needs.

Methuen, I think the drama is not just with you, it's with whoever is in your mother's circle because of the disordered thinking and emotional needs.

[Methuen]

Thanks Wools for the support and encouragement.  You nailed it.  Many hills, curves, sinkholes, and likely even mountains to climb in the road ahead still.  What does infinity look like...?

I appreciate you reaching out.

We always remind each other on this board to take time for self-care.  First time I heard that expression was over 4 years ago, and I'm almost 60.  It's a work in progress.  Despite the pandemic, and my mother, H and D24 and S26 and I successfully travelled to paradise for 2 weeks of wellness for all 4 of us.  That was self-care.  Yesterday I was with mom for almost 4 hours transporting her to a specialist appointment, also various blood and heart tests.  Today I am staying home.  Working on my self-care plan, which involves back treatment for spasms since shovelling snow to transport mom.  

While health care personnel are familiar with mental disorders, they also don't just go along with what the disordered person wants. They may be asking your mother to lie down, hold still- so they can get the drops in. Saying that to my mother- she'd think they were "ordering her around" and she doesn't like that.

This is so bang on NW.  My mom has even used the phrase "ordering her around".  I have met her home health helpers.  They have such a gentle caring approach to care for her.  "Gentle approach" is actually in her home care binder.  She can't read it because of her macular degeneration.  Your example, is really a perfect snapshot of how she interprets the world through their own distorted lens.  I'm so thankful I am able to feel genuine gratitude for things, even in times of difficulty.  My mom can't feel gratitude for kind people coming into her home to give her drops so she doesn't have to go blind.  Instead, if one comes "late" (her interpretation), that becomes a reason to attack them and an excuse to threaten to "cancel" the service.  

Dad planned well for their elder years and so we are grateful she can do this. She's refused assisted living, and I think it would be an unhappy situation for all involved, even if it would meet her basic needs. It would not meet her emotional needs.

This is where our mothers might differ a bit perhaps.  My mother has always been a social butterfly.  Amongst her friends, she had energy, and would say unpredictable things that they would find funny (this is before she became decrepid).  Being around people met her need for attention.  If my mom were a water glass, being around people "filled her up".  It met many emotional needs.  She always picked friends who were kind, and people pleasers.  When she was in nurses training, she absolutely loved living in residence.  I can see why.  But, like her resistance to home health helpers, she is resistant to the idea of assisted living.  She has distorted ideas about assisted living, and based on that, wants nothing to do with it.  H and I actually think she could thrive in an environment that provides stimulation and social opportunities. Instead, she is incredibly lonely in her own home.  She telegraphs this to me daily.  FOG to spend more time with her.  I don't  oblige, but navigating the constant FOG is an irritant.

Methuen, I think the drama is not just with you, it's with whoever is in your mother's circle because of the disordered thinking and emotional needs.

 I think you are probably right.  When her eye infection first happened and she needed drops every hour on the hour around a 24 hour clock, her friends organized a respite time for us between noon and 6pm daily.  They had a schedule of people and each friend took a shift on a specific day of the week.  I sensed relief on their parts, when I was finally able to secure home care to administer the drops (which by then were only 4X/day). They were so giving and kind with their time, even though they were also in their 70's and 80's with their own problems.  They again stepped up when our family was on vacation for 2 weeks recently.  I never ask for anything from them.  I don't have to.  I know mom FOG's them too because they all seem to know when I'm going away, and just fill in the gaps for her.  I hear about what they did.  I think their assistance makes her feel important to a degree (inside she struggles with emptiness and worthiness).  Just the fact that their visits with her have dropped off, makes me think that they have a sense of duty to their friend, or the visits wouldn't drop off, right?  I highly doubt that they "get" anything from visiting her any more.  Their visits to her are likely "working" visits, as are mine.  I just can't imagine a genuine reciprocal relationship...that she "gives" anything to the relationship.  Her needs are just too great.  All she does is talk about herself and negative world views I expect, and get them to do chores for her.  It's just remarkable at how skilled she was to groom such good people to be her friends.  However, it's certainly good for me, and I'm  grateful to them all for being such good people.

The specialist yesterday got her to agree to start a very low dose of Cinimet (for her Parkinson's), she how she responds, and hopefully increase the dose slowly.  We shall see how that goes.  I am aware of the risk that actually improving her symptoms could be counterproductive to a borderline personality.

I have a phone meeting arranged for next week with the elderly care specialist who will be doing mom's RAI assessment later in the month.  She listens and has a solid understanding of the issues, and the dynamic.  She has offered support and been helpful when I have asked for it in the past.  I expect mom will have a "great day" on her assessment day.  She will perform and let her charm show.  The problem with these assessments is that they are such a small snapshot, and don't really fact check the situation.  Eg "How are you managing with your own meds?"  Mom: "really good.  I put them in my case myself.  I like doing my own meds.  I was a nurse you know."  Meanwhile, I find pills on the floor every visit.

Hence my conversation next week with the person who will be doing the assessment. All I can do is inform her.  It will be interesting to see what comes out of the assessment, and how much weight, if any, gets placed on the reports from the family.  

Grasping onto hope.

[Methuen]

I know you dread saying nearly anything to your mother yet there possibly could be some benefit in doing so, if only it is to let her know what the firm boundaries are that you are setting with her. Your mother gets away with what she does because she seems to pretty much always find ways to manipulate things to have everything her way. Now she is in a situation where she actually needs the home health care workers, can not so easily fire them, and that certainly makes her furious, to have to pay these people and not being able to manipulate you into being her full time caretaker.

  Bingo.  I think I have come a long way in setting boundaries for what I can/can't do for my mom.  It has been hard, and uncomfortable, because she has pushed back in such reactive and mean ways in the past.  And I absolutely hate being put in a position where I have to set boundaries, over and over again.

Where I live, the "agency" is actually a branch of our public health care system.  I do take every chance I get to express gratitude every time I see one of them, but you are right, and I will make a point of expressing the many ways they help mom, and how the gentle approach is most helpful, when I talk to the elderly services consultant next week.  Thanks for that reminder.