Mother living independently in a tailspin

[Depression = 72% of members]

Mother is 88, and in a serious mental health crisis along with her laundry list of physical problems.  She has fiercely resisted assisted living for some years, saying "she would rather die".  She has also fiercely resisted getting home care help. 

After an acute eye infection 2-3 years ago, she had to put drops in her eyes 4X/day.  She lives independently, and I was not going to drive there 4X/day to put them in and give up my life, so I managed to get home care.  After about 4 months she cancelled home care and started putting in her own drops.  The problem is she has Parkinson's and shakes like a leaf, so the drops don't actually get in.

Yesterday my H took her to her ophthalmologist appointment, and learned that her vision is now 20/400 and 20/100.  She's going blind.  Her eye doc told her yesterday that moving forward, she needed home care to put her drops in.  She started blubbering in front of her Dr who recognized she is depressed, and also told her that to keep the vision she has, she needs home care to put all her drops in.

Last week she had another ministroke.  She chewed 2 aspirin and didn't even report it to her Dr.

She's lost so much weight that her PJ bottoms don't stay up on her bum.  Kind of a nasty situation when visiting.  She doesn't care.

Both her hearing and word recognition have declined, so she now hears 32% at 85dB in one ear and 36% at 80 dB in the other ear.  Trying to talk to her is a gong show.  It's impossible to have a conversation.

Before we went on our holiday, she told her Dr she was depressed and asked for an increase dose of her antidepressant.  He prescribed it.  Now she refuses to fill the prescription and says she's not taking a higher dose.

She wanted a bath assist, but since she refuses to get any service through home care (i.e. an OT to come assess and advise which type of bath assist would be better for her), my H told her she could pay to have a private OT come look.  She said yes to the price.  The OT advised her on her bath assist, and also told her she should not be taking her compost outside (which involves going down 3 steps).  She didn't want to hear that, so when the invoice came, she told my H "she wasn't paying that BI_ _ H".  H told her he had guaranteed the visit to his credit card, and she replied that "he could pay for it". 

While we were on holidays, her housekeeper got daily calls from her, including that her phone wasn't working.  There is nothing wrong with the phone.  But she bugged her housekeeper daily until the housekeeper went out and bought her a new one. Attention seeking?  Now she has 2 phones.

This isn't even the tip of the iceberg.

Her "independent living" is a horror show.

Today I told her family Dr that she was refusing to taking her increased dose of anti-depressant, and talking about "assisted death".  He said he would "note it on her file" but didn't say we should bring her in.  She is scheduled to get a "home assessment", but will undoubtedly cancel it, because she can.  She has already cancelled it 2X since last May (when she was supposed to get it).

She's negative, mean, and utterly toxic to be around.  She will never follow medical advice that would help her, and she texts H and I each daily to tell us how terrible her life is.  We never reply.

A few days ago, I got a text from mom "You have figured out how to spend the least amount of time with me".

I live a 5 min drive from her.  I am well past being "burned out".  The truth is I don't even want contact any more.  After spending my life trying to be the perfect daughter to her, I let go of the "impossible" 3 years ago, and stopped being her "caregiver".  H took over grocery shopping and bringing her to appointments, and he acknowledges it's the hardest thing he's had to do in his life.  He would like to "be done".   I've only seen her once in the last 3 weeks because after we got home from our trip we got Covid, and then after we recovered from that, we were gone for a weekend again.

I'm feeling FOG to visit her again this weekend, but I know it will be a disaster.

Any advice?

[Methuen]

Mother is 88, and in a serious mental health crisis along with her laundry list of physical problems.  She has fiercely resisted assisted living for some years, saying "she would rather die".  She has also fiercely resisted getting home care help. 

After an acute eye infection 2-3 years ago, she had to put drops in her eyes 4X/day.  She lives independently, and I was not going to drive there 4X/day to put them in and give up my life, so I managed to get home care.  After about 4 months she cancelled home care and started putting in her own drops.  The problem is she has Parkinson's and shakes like a leaf, so the drops don't actually get in.

Yesterday my H took her to her ophthalmologist appointment, and learned that her vision is now 20/400 and 20/100.  She's going blind.  Her eye doc told her yesterday that moving forward, she needed home care to put her drops in.  She started blubbering in front of her Dr who recognized she is depressed, and also told her that to keep the vision she has, she needs home care to put all her drops in.

Last week she had another ministroke.  She chewed 2 aspirin and didn't even report it to her Dr.

She's lost so much weight that her PJ bottoms don't stay up on her bum.  Kind of a nasty situation when visiting.  She doesn't care.

Both her hearing and word recognition have declined, so she now hears 32% at 85dB in one ear and 36% at 80 dB in the other ear.  Trying to talk to her is a gong show.  It's impossible to have a conversation.

Before we went on our holiday, she told her Dr she was depressed and asked for an increase dose of her antidepressant.  He prescribed it.  Now she refuses to fill the prescription and says she's not taking a higher dose.

She wanted a bath assist, but since she refuses to get any service through home care (i.e. an OT to come assess and advise which type of bath assist would be better for her), my H told her she could pay to have a private OT come look.  She said yes to the price.  The OT advised her on her bath assist, and also told her she should not be taking her compost outside (which involves going down 3 steps).  She didn't want to hear that, so when the invoice came, she told my H "she wasn't paying that BI_ _ H".  H told her he had guaranteed the visit to his credit card, and she replied that "he could pay for it". 

While we were on holidays, her housekeeper got daily calls from her, including that her phone wasn't working.  There is nothing wrong with the phone.  But she bugged her housekeeper daily until the housekeeper went out and bought her a new one. Attention seeking?  Now she has 2 phones.

This isn't even the tip of the iceberg.

Her "independent living" is a horror show.

Today I told her family Dr that she was refusing to taking her increased dose of anti-depressant, and talking about "assisted death".  He said he would "note it on her file" but didn't say we should bring her in.  She is scheduled to get a "home assessment", but will undoubtedly cancel it, because she can.  She has already cancelled it 2X since last May (when she was supposed to get it).

She's negative, mean, and utterly toxic to be around.  She will never follow medical advice that would help her, and she texts H and I each daily to tell us how terrible her life is.  We never reply.

A few days ago, I got a text from mom "You have figured out how to spend the least amount of time with me".

I live a 5 min drive from her.  I am well past being "burned out".  The truth is I don't even want contact any more.  After spending my life trying to be the perfect daughter to her, I let go of the "impossible" 3 years ago, and stopped being her "caregiver".  H took over grocery shopping and bringing her to appointments, and he acknowledges it's the hardest thing he's had to do in his life.  He would like to "be done".   I've only seen her once in the last 3 weeks because after we got home from our trip we got Covid, and then after we recovered from that, we were gone for a weekend again.

I'm feeling FOG to visit her again this weekend, but I know it will be a disaster.

Any advice?

[Notwendy]

I understand- I am sorry we arrive at feeling like you do. It's not something we wanted and I think also, we have tried to not feel this way- putting aside our own feelings and trying to be a good daughter.

I think this is why that article I posted about the woman whose BPD mother got evicted and she was expecting a baby and couldn't take the risk for the baby seemed so relatable. We aren't in her exact situation but there's the struggle. To protect our own mental well being- we have to be firmer than we ever wanted to be and it feels mean, it feels wrong.

We want to be good daughters but in a way, I don't think we can be- unless we resign ourselves to servitiude with them. I think their need is so high, and that is their focus.

BPD mother said something to me the other day that seemed to explain it. She's depleted her savings. She has enough of a monthly income to manage but it's going to be tighter. We have been trying to get her to priorize her spending - she had a comfortable amount, but not now. She was saying what will she do, what will she do? And I said to her, "we tried to discuss this with you but you didn't care".

She said "when she's in pain, she doesn't care about anything else". (but what she feels she needs in the moment). She has some physical conditions, but she has pain medicine for that. She isn't in physical pain. There are nurses on staff and nurses come to see her and they check for that. This is her BPD emotional situation and I think she's focused on that.

She doesn't care about the impact of her behavior on me or anyone else- so I have to be the one to care, and with any "no" to her needs- she will perceive this as somehow hurting her- no matter if my intentions are not to hurt her.

Methuen, I think what you are seeing is this seemingly bottomless emotional pit of needs. Our mothers look outside themselves to begin to fill it- maybe through relationships, or substance abuse, or addictive spending- but it's impossible to fill it. We can try- but we can't be successful- nobody can. We feel a sense of pull towards a mother but also a sense of dread.

It's hard to say no and it's hard to feel "mean" but I think at some level, we have to accept that any "no" to our mothers is going to be difficult and feel "mean" to them and to us. But without that "no", there is no limit on their part to what they feel they need from us.

For me, I need the emotional support of people who "get it"- and also in confidence. This means counselors. I recall a meeting with a social worker where I knew BPD mother was going to raise the topic of moving near me. I dreaded that meeting, dreaded saying no.

But I have stayed with her alone in her house to help out and I know how that goes. Of course we are willing to help with an elderly parent but with our mothers - that help is inseparable from their emotional and verbal abuse, and manipulations. It's not the help we are refusing- it's the abusive behavior- and it's not possible to separate the two.

I dreaded that meeting. What I did was find a counselor online who did virtual appointments and whose specialty was abusive relationships. I contracted with her for one appointment and during that appointment, we role played- with me saying no and then dealing with the reaction. I wrote down what I wanted to say at the meeting. There was one moment where BPD mother did get to me and I began to react, and JADE- but I could see it and quickly went back to script.

I also lean on my 12 step group and I understand your situation- being in a small area. I am in a relatively small area too. It is easier that my mother isn't in the same town. Whatever is working best for you- lean on your support people- people who do "get" it.

This is a difficult situation but - decide what you can do and what you are willing to do. It won't meet your mother's expectations or needs, so it has to fit your own- whatever that is. Your mother seemed to be managing while you were on holiday- so you know she has her resources.

In a similar behavior pattern- my mother has poor circulation in her legs and won't comply with medical advice. She won't wear the supportive stockings. She won't put her feet up. So then, she gets sores on her legs. She won't let the nurse do proper wound care. She's been warned about the possible serious complications and it seems she allows them to do enough of the care to avoid them but not enough to allow her legs to actually get better.

Your mother remains in control of her decisions, and her situation. You can do what you are able and willing to do- but it's your mother who is self determined. This is difficult. I'm sending you virtual hugs as you navigate this.

[zachira]

Is is possible that your mother is now at the point where she would most likely be declared mentally unfit to manage her own care? It could be time for a consult with a lawyer. Thinking of you and hoping you can do what is best for your own self care.

[Notwendy]

I don't know the laws where you are, Methuen, but I am in the US and I have met with an elder law attorney. Here, the law is to protect the indvidual's autonomy and for the elderly- to protect them from elder abuse- as some adult children may attempt to take control of an elderly person and the finances. So were I to go to court over my BPD mother's ability to make decisions, the suspicion would be on me, not her. I would have to show evidence- specifically a neuropscych evaluation, and have witnesses and documentation. So far no medical professional has certified her as incompetent.

She's had moments where she's been confused and her care team has begun to pursue it and then she turns around and is lucid again. Sometimes there's a possible reason like infection or medication but also, I wonder if she may be feigning it sometimes. Also, each time a provider has asked me to step in with my POA- she then reverses the decisions, and also then paints me black to her providers. I am reluctant to do this now. I also don't want to have the power struggle over any decision I make for her, even if  I would make the best one I can think of for her.

A court case on her behalf would be costly and likely to fail as I don't have evidence and she would "pull it together" in front of the judge. It's a useless attempt. However, the information I did gain from the attorney was well worth it- even if I can't do anything. I think there's value in knowing about the process.

It still comes down to this: Only a crisis situation would prompt a change. She refused assisted living until it became evident that the bank would repossess her house if she didn't move and sell it. As long as your mother is self directed and is maintaining in the house - even if it isn't doing it well- she's likely to maintain the right to do so.

We don't want our mothers to suffer- whether it's due to their own decisions or not up to them. So knowing we can't do anything to control their decisions feels helpless. I do support their right to autonomy and self direction when it comes to their decisions, but then they also need help. It's a difficult situation.

[zachira]

A one hour consult with the right kind of attorney can be well worth the time and money. It does not mean you have to take action or be the one to do so. Sometimes it is a government agency that will take the necessary steps to get a person into the right care.

[Notwendy]

Zachira- I fully agree. It was well worth it. It was also worth it to be able to explain to extended family just why I can not take control of her situation. It was also worth it to call social services to ask about my father- their reply "legally competent to make their own bad decisions" has helped me in difficult situations where I am not able to intervene.

[zachira]

Some of the behaviors Methuen is describing sound like her mother might be suicidal which could translate into meeting the requirements for an involuntary mental health hospitalization where she would likely be fully evaluated for her competency to care for herself.

[GaGrl]

Methuen, I think a home visit is critical. Can you schedule one and arrange to meet the visiting nurse ( or social worker, or whomever), at your mother's house along with your husband. Your mother will be furious, but a home visit is called for.

Unless...the 4x a day home health nurse can assess just as well?

[CC43]

Methuen,

I concur with some of the other posters who wonder if your mother would still be deemed legally competent, and able to make decisions about her well-being.  During the last couple of years, I went through the end-of-life process for my father.  It was clear that he had deteriorated considerably, physically as well as mentally.  He was also very depressed and in pain, and that made him uncooperative and nasty at times (but no where near as bad as the BPD behaviors described on these boards).  He was ultimately deemed unfit, at which time, my mother and I made critical decisions for him, even if we found ways for him to THINK he was still in control.  Looking back on it, however, I think he should have been deemed unfit at least a year earlier.  But it was tough to read, as he'd have some not-so-bad days; it's just that in the last couple of years, the proportion of bad days outweighed the good ones.  He hated losing control of his life, mind and body, and he was acting out.  An example is that he would throw food when he didn't get what he wanted to eat.  He was obstinate about taking medications, and that was exasperating, as you've mentioned.  He didn't want to do what the doctors told him, and I think can be a sure sign of unfitness (as well as stubbornness, which was part of his usual personality).

Does it help once your mother has other people making decisions for her?  Maybe.  But she'll still lash out.  If she's mean, you might take that as a sign that she's not feeling well . . . that's just how she shows she's in pain and unhappy.  By now, you should know not to take her behavior personally.  But I know it's so hard, as you still have to deal with her, and you want to be a good daughter.  You are.  Your mom will probably never understand that--her mind and body are probably too far gone--but what's important is that you understand that you're doing your best, and that's all that matters.

[Notwendy]

 By now, you should know not to take her behavior personally.  But I know it's so hard, as you still have to deal with her, and you want to be a good daughter.  You are.  Your mom will probably never understand that--her mind and body are probably too far gone--but what's important is that you understand that you're doing your best, and that's all that matters.

I agree that it is important to not take this behavior personally- it's not about you, it never was about you.

There is a difference though between this and an elderly parent lashing out in their elder years. My MIL and father did some of this. It was emotionally difficult with my father as - even if it wasn't personal- so hard to hear.

With my BPD mother- while age has influenced her behavior- it's not much different than it ever was. Verbal and emotional abuse - that is a constant. There isn't the bond or the memory of a better relationship. When my usually sweet MIL snapped at me once- I knew, this isn't her. With my BPD mother- it is her- this is who she is and our relationship is similar to what it has been. The main difference is that I am not a child and so have choices about what boundaries to have with her.

I do agree with a social service visit, if there's a chance it might help.

Is your mother suicidal? Hard to know. Mine isn't. She has a strong survival instinct but she will say things sometimes. It would be alarming except that she is in a supervised situation so they aren't possible. Saying things like she's going to jump out the window. The windows are locked and she would not be able to climb up to them if she wanted to. Is assisted death even legal where you are Methuen? It's not in my mother's area. She would not ever choose that if it were.

One of the most confusing behaviors my mother is doing is refusing to bathe. She's not been diagnosed with dementia. She's not depressed ( and she is on an antidepressant). She has regular nurse assessments. Nobody has come up with a reason, other than to be in control. But it's so unlike her as she's been invested in her appearance. She gets her hair done nicely, wears nice clothes but she won't bathe - to the point where it's really bad and then she's forced to.

[Notwendy]

I understand the concern about being judged in a small town. One of our neigbors - who I didn't know well- was living alone as a elderly widower. Friends would drop in on him to check on him. I thought he was well liked. His wife was- she was involved in a large church community and people liked her so I assumed he was too.

Turns out, after hearing about him from people who know him- he is a difficult person. His house was a mess and people became concerned. His daughter lived nearby. I asked "what about her?" and got no reply. So I read between the lines on this. If she isn't involved, something is up.

Not once have I heard any criticism of the daughter. These are the kind of people who wouldn't say a mean word about anyone but they - not in a mean way- made it clear that this man is difficult and even they had a difficult time with helping him. He needed a nursing home but wouldn't go. I suggested calling social services.

I think a common entry point to a nursing home facility is if the person gets an illness, goes to hospital, and it becomes apparent that they can not return to independent living. It is understandable that nobody wants to be in one, and so would only do so if it was the only choice. Last I heard, this man did just that- went to hospital and then to nursing home.

The friends still visit him. I don't know if his daughter does. We know that someone with BPD or other disorders can have a different relationship with friends than with family. I haven't heard any critical comments about the daughter. Perhaps they know more about the situation than they would let on.

We don't talk about such things- and so we assume we are the only ones with this kind of secret and there's a shame to it- because we do feel shame that we don't have a "normal" relationship with our mothers.

During one of the conversations with the friends - one of them brought up a disordered sister who has created family drama. And I'd have not ever guessed this about this family. I know there's a fear of being judged and some people do judge us- but there could also be other people who understand it better too.

[Methuen]

Thank you everyone for your thoughtful replies. 

Interestingly, the door to assisted living seems to have been opened a crack in mom’s mind.  She may be warming to the idea, or it may be a game..  We have recently spoken to several of her friends who have told us they have spoken to her about it and encouraged her to go.

I am more hopeful now that other people are seeing the truth.

She has a home assessment tomorrow. Historically she pulls it together for these.  H will be with her. We put together a letter to the worker to give her a heads up, and received a confirmation it was received. This assessment was supposed to happen last May, but mom cancelled it.  She has the “capacity” and the right to do that.

I’m not holding my breath as I don’t know that I have the resilience to navigate another disappointment.  Too many times mom has performed for the assessment - and said she doesn’t want assisted living. 

We’ll see how tomorrow goes.

I may be at the point where it’s time to speak to a lawyer just to explain the situation and get information as some of you have suggested.

Even if she said she’s ready, there’s a two year waiting list, so nothing is likely to change since she is defiant against getting home care help.

NW, your mom refusing a bath doesn’t surprise me.  Nothing about a bpd mother surprises me anymore.  The contrariness fits the BPD.  My mom has “cancelled “ a lot of baths too.

Thankfully we have started having more conversations with some of the people around mom, and the one’s we’ve spoken with are on to her.  But we haven’t spoken to all of them.


She does have a way of smothering people with her neediness and being consistently demanding.  We sense that some of them are also tired of her.

[Notwendy]

Perhaps the situation is turning towards the idea of assisted living. If there is a two year wait- it's a good idea to get on the wait list just in case. I also think it's a good idea to speak to a lawyer- so you know what the laws are for elder care in your country and also what to do legally if your mother was ever to be considered "legally mentally incompetent". I think for many people, speaking to a lawyer when it comes to a mother seems extreme- but our relationships are different.

For change to happen, it's been a crisis situation. BPD mother's choice is to remain in control unless she doesn't have that choice. My BPD mother had been needing assisted but refused suggestions to consider it. We were not the only ones suggesting it- friends were too. It wasn't until there was a risk of the bank taking her house and her relatives intervening that she considered it.

In assisted living, care needs are determined by physical needs. Assisted living is still a bit of a mismatch because her emotional needs exceed her physical needs. She still has the relationship issues. But it does take care of the basic needs and this would be a good thing for you and your H- to know that your mother has her basic needs met. I hope this is something that can be worked out for you.

[losthero]

I live in the United States and my BPD mother has been kicked out of two assisted living centers.  My mother broke the rules,was constantly seeking their attention, was rude and argued with staff and other residents.  My mom went there voluntarily (I can't get a doctor to deem her incompetent) and neither can APS.   She was living in a hotel room for a few weeks with a drug addict friend then got sick again and is cured to in a physical rehab center she has about 60 days left in there that insurance will pay for. My mom is diabetic and non compliant she broke her foot and due to her disorder she didn't take care of it and had a leg amputation.  She neglects herself on purpose for attention seeking and to feed her opiate and tranquilizer addiction. No one can tell her what to do. She will yell and lie and be vile.  No one on the family wants anything to do with her.  I live in a different state but I am her emergency contact and try to help with things as I can.  Be careful. You don't think about what happens when their behavior gets them kicked out.

[Methuen]

losthero I am sorry.  The addiction piece is a double whammy.  What I have learned is that we can not rescue them from themselves.  NW has posted a link to a story that all of us can relate to, and includes the addiction piece as well.  If you haven't seen it already, I would recommend it.

https://slate.com/technology/2022/03/mentally-ill-parent-elder-care-boundaries-liz-scheier.html

Here is my update:
Her RAI assessment was in her home.  My H was present.  I was at work.  We sent notes to the assessor the week before.  This cued him to dig deeper when mom wasn't forthcoming.  You may recall that a few years ago mom got an eye infection after macular degeneration shots.  She had to get eye drops 4X/day.  She can't do it herself because she's 88 and has Parkinson's.  After 3-4 months, she cancelled the home care for putting her drops in and said she could do it herself, even though everyone including home care told her the drops were not getting in her eye when she did it herself.  Now she is going blind.  One eye is 20/400 (the eye that had the infection), the other eye is 20/100.  When H was with her at her recent ophthalmologist appt she was told by the Dr that home care needed to put her drops in.  She insisted she could do it. We had cued the RAI assessor to this (although they should have known because they are the same ones that let her cancel the home care service), and he asked her this:  Would you like to have home care put the drops in your eyes, and lose your remaining vision more slowly, or would you like to put your own drops in and go blind faster? She worked hard to weasel out of that but the assessor firmly repeated the same question....4X!! She acquiesed and said ok, but then yesterday and today kept insisting she could do her own drops.

I had enough.  I finally put my big girl pants on and stood up to her.  I told her the drops were not getting in her eyes.  Everybody who knows her that we've spoken to has also told us the drops are not getting in her eyes.  She can argue and pretend that they are but they are NOT.  She is going blind because she puts her own drops in.  She's causing her own blindness. I was firm and forceful, and frustrated. I had to rinse and repeat this message a few times.

Then she started in about it being the Dr's fault because she got the infection.  To which I pointed out she was a nurse and knew full well that with any surgery there was a risk of infection, and when she started getting these eye shots she knew about that risk and accepted it.

So then she laid down on her couch to "prove" she could put her own drops in, so I got my phone out and recorded it, and sent her the video, and promptly left her house.

She truly has zero insight into why she's going blind.  The macular degeneration shots have been working for 10 years. And the drops were working until she started putting them in herself.  I do not understand how someone 88 years old with ZERO insight can be deemed competent.

Yesterday her housekeeper called and left a message and said the handle on mom's toilet was broken.  So we went there and my H had to fix that which meant a bunch of time going to get new parts etc.  While he was gone, she went on a complaining binge, to which I said I had enough of her complaining and negativity, and wasn't going to listen to it anymore.  She started gaslighting me and twisted it to say "I make her feel bad", and then she fell off the cliff and tensed up and screamed she wanted to kill herself.  So I calmly asked her if I should call the ambulance?  I was prepared to follow through, but she pulled herself together and started blabbering about people from 70 years ago in another town that I've never heard of.

Mom also told me about a bowel movement "shaped like an orange" that gave her a LOT of trouble and didn't want to go down the toilet.  That night we called the housekeeper back to thank her for the message, and to communicate the toilet was fixed.  We used the opportunity to chat about mom.  Turns out the housekeeper got called in because the problematic bowel movement had plugged the toilet, flooded the bathroom floor, and with mom's bad vision she had stepped in it and then tracked it down her hallway to the bedroom - all on carpet.  The poor housekeeper cleaned all that up.  Mom of course had not shared those details.

Mom has an appointment coming up with the geriatrician this next week.  I forwarded notes to his office assistant divided into these sections: cognitive, physical, functional, social and affective, complete with examples and quotes from mom "I'm going to kill myself".  It took me over 5 hours to write that.  Historically mom pulls herself together for these assessments and puts on a Hollywood performance.  Then she falls apart the very next day.  We've been documenting her appointment results and dysfunctional behaviors for over 3 years - including texts, emails, and recordings so I had plenty of facts to draw from to produce "evidence".  I also included in these notes that mom is talking about euthanasia almost every time we see her now, and when she figures out nobody will listen or participate in that, I am concerned she will amp up the threats to kill herself.

It's a flipping crazy making gong show.  We are so worn out.

[Tangled mangled]

She’s really spiralling out of control.

I read your post Methuen but will keep it short.

The write up you made is very helpful but as someone in healthcare I can imagine that being put into as little use in reaching an immediate decision, while your mum’s performance at assessments will be taken seriously.

If I was in your position:


1) I will focus on the threats to harm herself- raise serious concerns and here’s your chance to amp things up- I can’t see a medical professional wriggling out of their responsibility to keep your mum safe.

2) I would start drumming it loud and clear that you have reached your limit with caring for your mum. If the professionals insist on assessing her to be competent then you owe it to yourself to wash your hands clean.

I sound cold and heartless but I work within the healthcare system and know that as long as relatives are willing to provide some support, her care needs will not be escalated. You will basically continue doing what you have been doing until you stop. The FOG will hold you captive until you set yourself free.

In Europe, this might mean a temporary solution with your mum being placed in respite until a permanent placement is found.

[zachira]

Methuen,
It sounds like your mother is close to the end of her life And she won't be here much longer with her rapidly deteriorating mental and physical health.

When your mother threatens to commit suicide, it is not up to you to handle that or make any decisions about whether the suicide threats are real or just another one of her manipulations to get your attention. Where I live, we can call for an immediate home assessment from a mental health team to determine whether an involuntary psychiatric placement is warranted. What resources do you have in your area that would assess your mother for suicidality and the need for an involuntary commitment to a psychiatric facility?

As always keeping my fingers crossed for you.

[Methuen]

as someone in healthcare I can imagine that <our notes - family perspective> being put into little use in reaching an immediate decision, while your mum’s performance at assessments will be taken seriously.

If I was in your position:

1) I will focus on the threats to harm herself- raise serious concerns and here’s your chance to amp things up- I can’t see a medical professional wriggling out of their responsibility to keep your mum safe.

2) I would start drumming it loud and clear that you have reached your limit with caring for your mum. If the professionals insist on assessing her to be competent then you owe it to yourself to wash your hands clean. I work within the healthcare system and know that as long as relatives are willing to provide some support, her care needs will not be escalated. You will basically continue doing what you have been doing until you stop. The FOG will hold you captive until you set yourself free.

Thank you for this TM.    

We are hearing the #2 message (about the person never getting into assisted living if there are other supports in place such as relatives, friends) from multiple sources, including people working within home care and health care here.  They are triaging patient applications for assisted living, and so only those without supports get in to assisted living.  Which means burned out family and friends must walk away from supportive roles and let the elderly person struggle alone and suffer until they end up in hospital, and family refuses to take them home.  Once they are in the hospital taking up a bed, the system has to deal with them.

It feels inhumane.  And yet the situation with mom is impossible.  She fights everything.  She fights every diagnosis.  Every prescription.  Every recommendation for her health and well being. She's high conflict, and only knows 3 things: complaining, negativity, and meanness. I've talked to her housekeeper, her gardener, and her 2 best long time friends, and they all say they have had to start saying "no" to her when she makes demands for them to come help her, and have had to put in "boundaries". They have all recently told me they feel so bad for H and I.  Their eyes are open and they can see what is happening.  So to look after ourselves once we are beyond our own breaking point, there seem to be no other options than walking away when she won't accept help into her house, and she won't/can't get into assisted living.

It is awful.  I still love her, but this is NOT a reciprocal or safe love, and I have been slowly distancing myself from her emotionally over the past 5-10 years.  More recently, her decisions, and drama, and chaos, and living situation have steamrolled our lives since we got home from our trip a month ago, and infiltrated our daily life pretty much 24/7.  We are frustrated and exhausted.

Tracking your own poop over your house because you can't see it should cross a red line.

Out of curiosity, may I ask if you work in health care in the USA, Canada, Europe, or elsewhere?  I am in Canada.

[Methuen]

Methuen,
It sounds like your mother is close to the end of her life And she won't be here much longer with her rapidly deteriorating mental and physical health.

When your mother threatens to commit suicide, it is not up to you to handle that or make any decisions about whether the suicide threats are real or just another one of her manipulations to get your attention. Where I live, we can call for an immediate home assessment from a mental health team to determine whether an involuntary psychiatric placement is warranted. What resources do you have in your area that would assess your mother for suicidality and the need for an involuntary commitment to a psychiatric facility?

As usual Zachira, you make good points.  I have so many recordings of her saying she wants to kill herself or she wants to die.  I don't believe they are suicide threats.  Instead they are statements about her "feelings", designed to get a reaction and attention, and blow off some steam, as well as make the other person feel guilty and caretake her "feelings". But at some point with how things are going (she's talking about euthanasia a lot), it could slide to something darker.  And she's always been extremely impulsive.

But I hear you, and together with tangledmangled's message, I agree that it's a good strategy to pursue.  We need to push that one harder as it's more likely to get attention from the system. 

[zachira]

Methuen,
I have some additional thoughts which may or may not be helpful or relevant. I am wondering why your mother has to go to an independent living near you when there is a long waiting list in your area. Would it make sense to have her go to assisted living or whatever facility best meets her needs when she is forced to go so she would not live so close to you which would give you and your husband some badly needed relief from having her live too close to you?

[Notwendy]

It feels inhumane.  And yet the situation with mom is impossible.  She fights everything. 

It is awful.  I still love her, but this is NOT a reciprocal or safe love, and I have been slowly distancing myself from her emotionally over the past 5-10 years. 

I understand this, Methuen, and even without not living close to my mother, I have come to this feeling too. Also, because I am not nearby- other people have assisted her- and so I have seen them become frustrated at her behavior- so I know it's not only with me. Although it is sad for your mother, Methuen, knowing that other people in proximity to you are empathetic to you and H's, hopefully will help.

There's another story on this board- the Bridge- that I think of in this situation. What feels like an impossible choice.

https://bpdfamily.com/message_board/index.php?topic=65164.0;all

As to your mother's threats of assisted death. If you are in Canada- it's legal then. It isn't in the US in the state my mother is in. I can't speak for your mother but for mine, she wouldn't do it even if it were legal. She's also made threats but the motive is to be manipulative and punitive. Any time she's seeked medical care she has indicated that she wants to be a full code. At a hospitalization, the hospital doctor asked about this and also her own doctor has asked her to change her mind. In her mind, not being full code means doing nothing and letting her go and she wants everything done.

What she didn't understand is that a full code means chest compressions with CPR and these would cause more damage than good and not be effective. It doesn't meant that she wouldn't get fluids, or nutrition, or medication if she wanted that. Once she understood this, she changed her mind about full code.

She says she wants everything done but it doesn't mean she will agree or comply with it. So there's this paradox- she wants to have everything done for her and then- as you say, she fights it. Due to her not complying with the care offered, she did qualify for Hospice and then did better so she's not on Hospice now.

She makes threats, but they aren't realistic. She said she was going to jump out her window. She can't get to the window to do that and it's locked.

As scary as what your mother is saying- you don't have to be the one to decide if she's serious about it or not. All you can do is to  get her medical help when she does make threats- and I agree- that is also a way to get her the medical attention she needs- a good strategy- as they will evaluate her. I think it's helpful to you too as it doesn't put you in the position to decide on her threats- the medical professionals are in a better position to to that.

[Tangled mangled]

Thank you for this TM.    

We are hearing the #2 message (about the person never getting into assisted living if there are other supports in place such as relatives, friends) from multiple sources, including people working within home care and health care here.  They are triaging patient applications for assisted living, and so only those without supports get in to assisted living.  Which means burned out family and friends must walk away from supportive roles and let the elderly person struggle alone and suffer until they end up in hospital, and family refuses to take them home.  Once they are in the hospital taking up a bed, the system has to deal with them.

It feels inhumane.  And yet the situation with mom is impossible.  She fights everything.  She fights every diagnosis.  Every prescription.  Every recommendation for her health and well being. She's high conflict, and only knows 3 things: complaining, negativity, and meanness. I've talked to her housekeeper, her gardener, and her 2 best long time friends, and they all say they have had to start saying "no" to her when she makes demands for them to come help her, and have had to put in "boundaries". They have all recently told me they feel so bad for H and I.  Their eyes are open and they can see what is happening.  So to look after ourselves once we are beyond our own breaking point, there seem to be no other options than walking away when she won't accept help into her house, and she won't/can't get into assisted living.

It is awful.  I still love her, but this is NOT a reciprocal or safe love, and I have been slowly distancing myself from her emotionally over the past 5-10 years.  More recently, her decisions, and drama, and chaos, and living situation have steamrolled our lives since we got home from our trip a month ago, and infiltrated our daily life pretty much 24/7.  We are frustrated and exhausted.

Tracking your own poop over your house because you can't see it should cross a red line.

Out of curiosity, may I ask if you work in health care in the USA, Canada, Europe, or elsewhere?  I am in Canada.

Methuen,
I’m in the UK, the principles are thesame no matter the country. We all swore the Hippocratic oath.
What you have described happens where I am and the system only gets involved following an incident. Usually a broken hip, then immobility, increasing confusion, constipation etc. the patient becomes even more incompetent then they are assessed to be cared in the community either at home with round the clock care or at a care home.
Zachira has made some interesting points about seeking care out of area.
The issues at hand is safety- I’ve witnessed elderly patients attempt suicide so your mum’s threats are to be taken seriously. Remember she was a nurse too- this is also a risk factor to consider.

[Methuen]

Methuen,
I have some additional thoughts which may or may not be helpful or relevant. I am wondering why your mother has to go to an independent living near you when there is a long waiting list in your area. Would it make sense to have her go to assisted living or whatever facility best meets her needs when she is forced to go so she would not live so close to you which would give you and your husband some badly needed relief from having her live too close to you?

We would be all over this!  The problem is that mom still has capacity and would have to consent.  Thanks for your continued problem solving effort  I so appreciate that you keep trying to help with ideas.

[Methuen]

Although it is sad for your mother, Methuen, knowing that other people in proximity to you are empathetic to you and H's, hopefully will help.

It's been a game changer.  In the last two weeks, we have been able to have an honest candid conversation with all the one of her supports.  The ones we spoke to were so compassionate.  They see what is going on with mom.  They call her stubborn.  One called her pig-headed.  They all said they feel really bad for us.  Two of them said they have seen enough to know they will never do this to their daughters.  I have always struggled with guilt from societal values that daughters are expected to care for their elderly mothers. Those expectations are heavy, and all my friends have "normal" mothers, so I have felt misunderstood and ashamed that I can't do that for my mom.  Now I have learned that almost all of these people not only feel bad for us, but several of them have had candid conversations with mom that we are getting on in life as well, and "need" to be able to live our own lives. They have told mom point blank she should go into assisted living.  Of course the problem is that now it is too late, and they are triaging who gets in.  The good thing though is that knowing these people are sympathetic, has given H and I the courage to do some advocacy.  We have written advance notes for the RAI assessor and the geriatrician (they each got different notes), and also sent follow up notes (after the RAI assessment was done) to the RAI assessor. 

As per recommendations from some of you on this thread, we had sections pertaining to her depression and her speech about "wanting to die" and "kill herself", as well as giving some details to our degree of burnout.  My H declared that the next time mom refuses or cancels home care help, he is going to tell mom "he can't help her anymore."

I'm not expecting anything to come from this.

But at least we've put it in print for the proper authorities.  It's been at least 10 hours each this week of collecting quotes, data, documented stories and organizing it into structured and concise documents.  It's been a lot.

There's another story on this board- the Bridge- that I think of in this situation. What feels like an impossible choice.
https://bpdfamily.com/message_board/index.php?topic=65164.0;all

You are right NW.  I had forgotten about this story.  But it fits perfectly - the dilemma of "letting go" the other person to save oneself.  Thanks for the reminder. 

As for the assisted death, I don't believe mom would qualify.  There are strong rules in place to protect vulnerable people.  I don't think mom fits the criteria because there are way too many things she hasn't done that she could do such as taking her prescribed antidepressant to manage the depression. No docs are going to sign off on this.  Furthermore, her suffering and death isn't "imminent".

Aside from that, we believe mom's jabbering about euthanasia is more of a call for help, or even an attention getting ploy.  She already asked her Dr for a higher dose of antidepressant, but then refused to take it!  She just loves to cause chaos and dust up a whole lot of attention and people talking to her, and she can get that when she talks about wanting to die.

Like you, we don't even believe she wants to die.  It's more hyperbole - and her ways of expressing her feelings, and getting attention.  Mom is a FIGHTER.  Taking euthanasia is accepting the end and maybe a more dignified death.  Mom doesn't "accept" anything.  She didn't "accept" the diagnosis of Parkinson's.  She doesn't "accept" home health help even though she needed it 5 years ago.  There's a million examples of her "not accepting".  No.  Mom will fight death to the end.  Her entire family (siblings and father) is malingerers.  They lived into their late 90's.  Mom will draw this out as long as possible.

Suicide attempt - now that is more believable.  She has enough pills, and she's emotional and impulsive.

I included this risk in the notes to the authorities.

[Methuen]

I’m in the UK, the principles are thesame no matter the country. We all swore the Hippocratic oath.
What you have described happens where I am and the system only gets involved following an incident. Usually a broken hip, then immobility, increasing confusion, constipation etc. the patient becomes even more incompetent then they are assessed to be cared in the community either at home with round the clock care or at a care home.
Zachira has made some interesting points about seeking care out of area.
The issues at hand is safety- I’ve witnessed elderly patients attempt suicide so your mum’s threats are to be taken seriously. Remember she was a nurse too- this is also a risk factor to consider.

That is an excellent point about risk factor and her being a nurse.  So grateful for this forum.  You have all helped us focus on what is most likely to make an impact as we put our notes and letters together for assessors, geriatrician, and team leads.

Thank you everyone.

[Notwendy]

I hope for a good outcome for you Methuen- that your mother is determined to need help. I think it does help to have her in assisted living, albeit it's not perfect. There's drama there too but a staff nearby too.

[Methuen]

The geriatrician recommended she see a geriatric psychiatrist. Apparently this could happen virtually- which I can’t even picture under the circumstances.  I do not see that working.  She can’t see or hear, or process.

She scored moderate cognitive decline on the cognitive test - last time she scored mild. So that’s on record, which is good.

She has been told that as per dr orders, home care will be coming in 4x / day to put the drops in her eyes. She continues to tell the world she can do it herself.  Nobody is listening but that doesn’t stop her from saying it- as she goes blind.

The home care starts next week.

Her dr gave this same order 3 years ago when I was at the appointment with her.

H has decided that if she cancels the eye drop home care service again, he will withdraw his services and support to her.

I am beside myself as she continues to cause chaos.  It is too much.

[Methuen]

Three years ago I asked her family about a referral to a geriatric psychiatrist.  He didn’t think it was warranted. 

Nobody listens.

[Methuen]

The referral to the geriatric psychiatrist feels useless.  There are no available beds for at least 2 years, and I can’t imagine a big decision or diagnosis would come from a zoom meeting anyways.

It just makes them look like they’re doing something after the letters we wrote.

This is the same organization where 5 months ago I was told that a conversation about my mom “wasn’t worth their time and resources “.

I have lost trust and faith.

Meanwhile the family is left alone to manage a mother who is irrational, irresponsible, negative, complaining, depressed, manipulative, and mean, and consuming.

And today the nurse at mom’s house setting up the schedule for her eye drops told my H what a “dear sweet lady” she is. 

That is how they choose to see her, after all her behaviors, and our disclosures, with evidence of  “quotes from messages, emails, recordings “ and full disclosure of what this has done to us.

I am just furious. She couldn’t have said anything worse.

[Notwendy]

I am so sorry- it's similar with my BPD mother, just with another medical condition. She has poor circulation in her legs. The nurses would come and wrap them with bandages and she'd take the bandages off. She'd even cut them off sometimes. The staff took any scissors out of her room. Then she had one of her friends bring her some (who does this- bring scissors to someone in assisted living?)

This provider refused to treat her due to her not complying. She went to Hospice and did well so they discharged her. Now she's with another provider.

She's not supposed to have any medicine with her in the room that isn't ordered, even over the counter medicine. She gets her friends to bring these to her anyway.

I think it's some kind of control thing- to "break the rules" on purpose or to not cooperate- even if it is in her best interest to cooperate.

Interesting that when they were considering a dementia diagnosis for my mother- the plan was to do it by Zoom. They eventually changed their minds about doing it. I also wondered how much can someone tell about a person by a Zoom call.

I understand your frustration. Even though I agree that it's better that my mother is in assisted living- it's a challenge there too.