Another fall

[Methuen]

  Mom (84 uBPD) had another fall yesterday morning.  I was there when it happened and called an ambulance.  Xrays showed she broke her arm (she was holding a grab bar going down two steps to her garage when she lost her balance).  Holding onto the grab bar broke her right arm.  She is right handed.  She was in acute pain (break at the top of her humerus at her shoulder).  She used a walker inside her house before the break, but I don't even know how she can get around her house with only 1 working arm for her walker.  Since it happened before the weekend, there was no opportunity to set up home care, so the hospital admitted her.  She enjoyed the care she received yesterday (lots of attention).  Today she was moved from emergency (which was well staffed) to the med/surg ward, and her ward was short staffed (if my mom's word on that can be trusted). She didn't like her nurse.  She said her nurse got mad at her. She got no attention, and no help going to the bathroom.  Tonight on the phone (I can't visit because of Covid), she told me that when she sees the doctor tomorrow morning, she's going to ask for a discharge because she doesn't feel safe in the hospital.  Meanwhile, she's still getting hydromorphone 4X/day for pain, and to look at her, she's physically almost helpless.  On the phone tonight, we talked about the Lifeline (push button alarm worn around the neck) which sits on her night table 24/7.  I asked her what she thinks about starting to wear it after this most recent fall.  She says she won't wear it because she's more likely to die from a stroke.  Because it's the weekend, I don't know when home care can be arranged.  The impression I got from the emerg doctor is that it could take several weeks to set it up because there is currently more demand than supply for these services.  She couldn't use her phone to talk to us today because she ran out of minutes.  She believes the phone company is trying to steal her money by saying she could top up her plan for the month so she could communicate with us.  Meanwhile, after she was admitted yesterday, our family of 4 united to buy her an IPad so she could communicate with us over FT, and play her computer games while in hospital.  We "set up" the IPad today, so it's ready for her to use.  We spent $600 feeling good about how it would help her, and tonight she told us she wasn't willing to top up her phone plan till the end of the month so we could communicate whilst she's in hospital.  Oh, and I forgot, after the last fall a year ago (on the grass under her plum tree), I cared for her for over a month.  That didn't end well.  It ended with me seeing my doctor for mental health reasons, and he ordered home care for her.  She almost immediately fired them all.  One of the services she refused was an occupational therapist to come in and assess her home for safety, and make recommendations.  Had she not refused that, changes that could have been made according to the recommendations of a professional which could reduce the risk of falls. 

I feel so helpless.  She is  impossible.  It is hard for our two adult children to witness their grandma like this (they are home for Christmas).  I try to remain calm and rational about it all, but it's difficult to articulate how she is going to have to find a way to manage because I can't provide 24/7 nursing care, especially when it is unknown when home care can even begin providing whatever limited care they can offer.  I should mention I am an only child, and no other family is within 800 miles.  The adult children leave after Christmas.

I spoke with the charge nurse, and asked to be updated by her doctor.  She charted the request.  Apart from that, thoughts anyone?

[madeline7]

Speak to the Discharge Planner or Social Worker at the hospital, and insist that this happen before she is discharged as it would be unsafe for her to leave until a plan is in place. I have been through this and it is a tough place to be. My uBPDm's Doctor told me sometimes it takes an emergency or even multiple episodes for discovery to happen in an ER and that is when the Doctor may get involved in "making" the decision for the elderly and unsafe parent.

[GaGrl]

One option that may be available would be a skilled nursing facility for her to do rehab. But the doctor and hospital's social services would need to approve that.

I also am an only child. My mom fell 28 days ago, broke her ankle, then developed pneumonia. Tomorrow, she is moving to a skilled nursing and rehab facility for 3-4 weeks. Everyone has been clear that she can't come home (she lives with us) until she does the physical, speech (swallowing), and occupational therapy to enable her to function in the house with appropriate assisstance.  My husband is 71, I am 67, and physically we can't provide 24/7 care.

I have felt frustration, guilt, and fear for my mom's situation. These are emotions I've had to push through.

Do you think your mom's doctor could have your mom assessed by a geriatric psychiatrist while she's in the hospital?

[zachira]

Methuen,
I agree with Madeline7 that a plan must be in place before your mother leaves the hospital and with GaGrl that this is an opportune time to get her into rehab. My brother was insisting on becoming mom's full time caretaker when she was soon to be discharged from a rehab facility (more about his need to be in control than actually providing good care for mom). I told my brother arrangements for home health care had to be in place before mom was discharged. Luckily the social worker told my brother the same thing. I think you should make it clear that you will not be directly taking care of your mother only overseeing the care she gets. This might be a good time to ask for an assessment to see if your mother qualifies for assisted living/nursing home. (My aunt whose personality was too challenging for the home health care aids who all quit, was eventually given this type of assessment and went to a nursing home, though likely would have been in assisted living if she weren't so difficult to deal with.) I feel sad for you, all the frustration of having your mother oppose you and others constantly, when you are only looking out for her wellbeing. Now is possibly the opportunity to see if you can be less involved in taking care of your mother and arrange for her to be taken care of by others. The crisis times can be the best times to get medical staff and the professionals on board to get relief for yourself and the right care for your mother.

[Mata]

Methuen - What an incredibly stressful situation, I'm so sorry you are going through it.  I don't have much in the way of advice, except to echo that asking to talk to a social worker might be helpful.  They usually can answer more questions about setting up home healthcare, rehab facilities, etc. than the doctors can.  And as difficult as it is, just repeat over and over to any healthcare person you talk to that you cannot provide any physical care for your mother.  Hopefully her medical condition, and not her wishes, will dictate when she can be released and to what situation.  It sounds like a rehab facility could be her best option.  Hugs to you!   

[Turkish]

Can you talk to a social worker like APS to get involved to take her case, perhaps? Mom mom wanted to "die on the hill" yet called 911 the last time she fell there. That was the trigger to legally remove her from her property. After she was settled and did well living in basically a strip motel for long time residents (it was nice, by a creek), she had further medical incidents and ultimately she ended up in long term care. We're in California, and it was a process, legally.

[Methuen]

My uBPDm's Doctor told me sometimes it takes an emergency or even multiple episodes for discovery to happen in an ER and that is when the Doctor may get involved in "making" the decision for the elderly and unsafe parent.

Yes, I have heard this.  This is my mom's third fall that has resulting in ambulance trips and hospital treatment.  They should be catching on.

My mom fell 28 days ago, broke her ankle, then developed pneumonia. Tomorrow, she is moving to a skilled nursing and rehab facility for 3-4 weeks. Everyone has been clear that she can't come home (she lives with us) until she does the physical, speech (swallowing), and occupational therapy to enable her to function in the house with appropriate assisstance.  My husband is 71, I am 67, and physically we can't provide 24/7 care.  I have felt frustration, guilt, and fear for my mom's situation.

The skilled nursing and rehab facility sounds optimal.  Nothing like that where I live unfortunately.  Similar to you, my  H is 65, I am 58, and we both have back issues.  Mine is more acute, his is more chronic.  I have to be careful lifting groceries, so holding my mom back from a fall isn't an option.  I can't provide nursing care either.  I can support in other ways, but I can't do the nursing.
Been there, tried that the last two times, didn't work.  At all.

This might be a good time to ask for an assessment to see if your mother qualifies for assisted living/nursing home. I feel sad for you, all the frustration of having your mother oppose you and others constantly, when you are only looking out for her wellbeing. Now is possibly the opportunity to see if you can be less involved in taking care of your mother and arrange for her to be taken care of by others. The crisis times can be the best times to get medical staff and the professionals on board to get relief for yourself and the right care for your mother.

Thank you for totally understanding Zachira.  This is a work in progress for me.  It is going to be very difficult because her friends (whom I know), cannot understand the dynamic, and only know the side of her which she shows them (which is different than the side of her I get). It is now official: she is completely off the rails dysregulated again.  Here is some of her text communication from the hospital:

Mom: 12:40am This is hell
M: 9:30am It won't be long. Bring my coat to pick me up
M: 9:45am Please I don't belong here
Me: 10:00am Good morning.  It sounds like this is a difficult time for you.  I hope Dr sees you soon, and we can be included. (I had requested to be included in the consult via telephone with both her, and the nursing station which charted my request)
M: 10:02am He's in the building
M: 11:06 Are you here yet? (at the hospital to pick her up)
Me: 11:08 We are at home.  Is Dr going to phone us?
M: 11:13 Help please
Me: 11:20 When do you think Dr will be able to call us?
M: He won't.
M: I can't understand why one of you couldn't check on me for a day till home care comes.
By now I'm starting to shake. Thankfully family is with me at the breakfast table.
Me: Hi mom.  You sound distressed.  It is understandable to be distressed.  I called the hospital and the unit clerk told me Dr is still in the hospital.  I wasn't able to talk to a nurse because they were all busy with patients.  Has Dr seen you yet?  My back is hurting again, so I have to be careful with what I do.  Remember to ask the hospital to find out how quickly home care can be set up for you.  We are all here thinking of you and we love you!
Dr: 1pm Telephoned me to tell me my mom was being extremely difficult in the hospital.  She was all dressed, and showed him how she could get to the bathroom, and then told him to discharge her.  He told her home care needed to be arranged first.  She became belligerant, and was bossing him around.  He informed me that he had become quite stern with her, and told her that she wasn't being discharged until home care was arranged.  Then he told me he made this decision based on the disclosures I had made after her last round of abusive treatment of me (coinciding with her last fall a year ago when I was near nervous breakdown and seeking mental health support).  By this point in the call, I was crying a bit, as it was such a relief to have this support.  Since mom hadn't liked what she heard from Dr., she went into full meltdown with him.  I'm thinking it's good for him to witness.
M: Dr threw a huge fit and I just cried all morning, and have no self-respect left.
Me: Oh mom that sounds like such a hard morning for you.  It sounds like you are feeling frustrated and sad.  I'm sure the hospital will try to quickly set up home care.  And we will help you too of course.  We all love you!
M: I don't know how anyone can be so mean.  I never fell.  I had to brace myself.
Me: I know it's hard right now.  Try to take long slow deep breaths.  Sleep , and heal.  When you get home, you will have a new $600 iPad to look forward to.  We love you!
M: nobody gives a damn
M: 5:45pm I've been to hell and back.  Not one speck of attention here.
Meanwhile at home, my H has spent the afternoon tracking down her PIN for her cell phone provider from her residence, so that we could top up her account, so that she could make phone calls from her cell phone.  She has the cheapest phone set up possible, and ran out of minutes soon after arriving at the hospital.
M 6:00pm. She phones us.  "My phone is working again". Yes mom.  H spent the afternoon looking after that for you.  I'm glad you can make calls again.  "I look forward to seeing you tomorrow". We hope home care can be arranged quickly too mom. Then she ended the phone call, but the message to me was clear: I was expected to pick her up tomorrow.  I know she is not pleased with me for not coming to get her to take her home today.

Tomorrow the circus will start again.  Despite the crisis, and my uBPD mom being completely off the rails, I am so grateful for my H's support, that both my adult children (visiting us now) have their eyes open and can support me (S25 is quite enmeshed with his grandma as he was the golden child, but thankfully lives quite far away, and has awareness). I also have so much gratitude for the Dr supporting me (mom and I have the same family Dr).  Also thankful for the support in this forum.  

The craziness feels a bit paranormal.  It has really intense periods in the day, depending on the texts coming from her.  I know that once home care is arranged, and she is back home, that it will get worse for me.  She will need to dump.

It took her months to recover from her last emotional dysregulation after her last fall a year ago.

She is scheduled for a new assessment with our home care assessment team in January.  I am both hopeful, and terrified (because of mom's resistance, opposition, non-compliance etc).  The last time was very disappointing because her case worker knew absolutely nothing about BPD. Mom "declined" assisted living (she was deemed competent to make that decision).

Any thoughts or feedback with further ideas, on my text conversation, or anything else is appreciated.  I welcome ideas and constructive criticism for how to improve my relating to her.  I'm trying to put my new skills into practice.

I feel bad for the Dr and nurses who took all the punches for me today, and for the other poor patients in her room that had to hear all her drama while the Dr was there.  

My guess is the hospital will be happy to arrange home care for her so they can discharge her asap.  Last time mom got home care, she fired them all.

Thanks Mata and Turkish for your posts.  All support is appreciated.

[zachira]

I just cringe when you describe how your mother is treating you and the hospital staff. You have often mentioned that that there are no assisted living facilities or nursing homes in the area where you live. Do you feel that it is absolutely essential that your mother be in a facility that is easy for you to get to? I share your concerns that your mother is going to make you be the only person able to care for her. You have said that she will likely fire the home health care aides and she is still considered legally competent to make her own decisions. My cousin was in a similar situation to yours with her mother, with the home health aides frequently quitting and my cousin who was in poor health and a senior citizen often having to take over because there was no home health care aide available because so many of them had quit. In the end, there was only one home health care aide left who was just exhausted. What boundaries do you think you have to set to keep yourself from not being your mother's round the clock nurse? I feel sad as I write this, because like you, I would so much have preferred to help my mother more in her old age if she had treated me with kindness and respect, yet I had to set firm boundaries with her that were painful, because I could no longer endure the abuse or what future abuse that was likely to occur.

[Methuen]

A piece of good news: I received a call from the hospital social worker today.  My H and D23 were present when I took the call (speakerphone), and told me later I did a good job of relaying the relevant information and laying out the problem.  The social worker listened well, and demonstrated through her reflective listening that she understood the problem.  She even used the term how mom "dumps on me".  Now I have to wait and see how all this translates into home care services made available to her.

You have often mentioned that that there are no assisted living facilities or nursing homes in the area where you live.

Small correction here:  we have assisted living and long term care here.  But mom has refused to go on the waiting list for this.  It was offered to her after her last fall a year and a half ago, and her response was a defiant NO.  She didn't want it.  Period.  GaGrl mentioned a "skilled nursing and rehab facility" which sounded like a temporary support and rehab facility before the patient goes back to their permanent home.  That type of facility doesn't exist where I live.  But assisted living does, however mom refused it a year and a half ago.  Now that she has fallen again, and a social worker is getting involved, I'm hoping the health care teams are more aware of the complicated dynamic, and will handle things in a more helpful way.  Time will tell.

[zachira]

Glad that you are getting some real support and understanding from the social worker. Thanks for the clarification on what facilities are available for your mom. I went to visit my personality disordered aunt in the nursing home and was there during lunch time so I got to observe many of the residents. (the aunt referred to in previous post) It seemed that all the other residents were severally mentally and physically disabled. From what I saw my aunt was the only one able to carry on a normal conversation and to get to the dining room on her own, and she did not seem to have any obvious signs of dementia. To qualify to be in a nursing home in my aunt's state, she had to meet specific criteria for admission. I am wondering if having an obvious personality disorder is what qualified my aunt for nursing home care. The nursing home told my cousins that my aunt was the most difficult resident they had. It might be easier to get your mother evaluated for nursing home care while in the hospital and possibly a conclusion that she can no longer live in her home even with home health aides or is capable of being in assisted living; her unreasonable personality might be enough to have her admitted to a nursing home without her approval. It certainly would not hurt to ask the social worker. Just throwing this out there, realizing this may not be a possibility at all. I am keeping my fingers crossed for you.

[Turkish]

That text exchange made me cringe.  I'm glad you responded with validation and neutrality. I'm glad that a social worker is involved now, someone who is trained for this.  I found my mom's APS worker surprisingly sympathetic towards me... after she talked to my mom's bank to clear me off stealing her money 

[Notwendy]

all the frustration of having your mother oppose you and others constantly, when you are only looking out for her wellbeing.

I am so sorry you are dealing with this, and it is familiar to me as well. My mother hasn't fallen thank goodness but with any attempts to help her this kind of thing happens. I think this statement sums it up well.

I think it's about control and taking control- if we try to help her, then she's not in complete control. The only way she can be is to oppose what we do.

It's so sad and hard. I wish I had  advice to add. I think the advice to speak with the hospital social worker is a good one. I did that when my father was hospitalized and I didn't think it was safe to send him home. Even if my mother was there as well, I felt he needed more assistance than what she would do. In addition, she's a small sized person and would not physically be able to assist him with self care tasks.

Unfortunately, with a residential rehab facility, they look at space available. They can likely find one, but it may not be close to home. Still, it might be preferable to her being home alone on her own, although she might also be difficult with the staff there too. I am so sorry but understand.

[madeline7]

The text exchange was exhausting. Especially when you said we all love you and it's followed up by nobody gives a damn. You spend all this time and effort to help and be supportive, and speak to her with compassion, yet no matter how much you do, it will never be enough. Most parents (from what I've been told!) would be so appreciative, but the BPD is the opposite. What you are doing for her despite her inability to show gratitude is a beautiful thing.

[Methuen]

What you are doing for her despite her inability to show gratitude is a beautiful thing.

Thank you so much Madeline7.  I really needed that shot in the arm. 

I think it's about control and taking control- if we try to help her, then she's not in complete control. The only way she can be, is to oppose what we do.

Exactly.  And how distorted is that right?  No wonder they make terrible decisions.

Mom was discharged from hospital today after 4 nights there.  A rapid response team was put in place to provide support at home for her, until more home care can be set up.  This means she gets 1/2 hr care morning and evening for dressing/meds/personal support, 1 bath per week, and a visit from PT/OT for a home risk assessment (which she refused 1 1/2 yrs ago after a fall).  After picking her up from hospital today, H, D23 and I, all spent 3 hours at her house settling her in.  That's a total of 9 hours of work between the 3 of us.  Then tonight, I went back to her house for an initial meeting with a member of the rapid response team.  I got there early, and brought mom her prescription of hydromorph ( 5 pills only, 1 a day at night time).  Because she broke her arm, she ordered me to leave the lid off the bottle.  I obey.  Then she shows me a bottle of hydromorph she found in her medicine cabinet from 2014. 
Me: Mom, do you think I should take this back to the pharmacy to be disposed of?
M: No no, it'll be good.
Me: Mom, the Dr said 1 pill per day at night time only.  If you still have too much pain after 5 days, he said to call his office.
M: she puts the "2014" bottle in the drawer beside her bed.
Rapid response team nurse arrives.  While they are talking, I go count the # of pills in the 2014 bottle.
Nurse: lovely personality.  Conducts the meeting according to the script, which includes requesting to see all mom's prescription drugs in front of her.  I bring them all, including the 2014 bottle of hydromorph.  We discuss mom's request to leave all the lids off her pill bottles (since she can't open them herself with only 1 arm), and I inquire about the safety of a 2014 script of hydromorph.  The nurse wisely picks up the cue and requests me to return the bottle to the pharmacy for disposal.  Mom says this is okay when the nurse asks her.  About 15 min after the nurse leaves mom's house, I get a phone call from her asking me to screw the lid on the pill bottle, and leave the pills in the proper script bottle (since mom wanted them moved to another container).  I put mom on the phone for the nurse to communicate with directly.  Mom agrees, reluctantly.  Nurse requests me to go into her bedroom, and put the lid on whilst I am on the phone, or says if I can't do that, she will come back to do it.  I go put the lid on.

Mom gets upset.  Then she shows me how she will have to use her injured arm to get the lid off herself. 
Me: Mom, you already took your pill for tonight.  You don't take another pill until tomorrow night, so you won't need to open the bottle.  And, the nurse will be here tomorrow morning to assist you.
Mom: starts ripping at the bottle, and then says "everyone is telling me what to do".  I hate it! Starts crying.
Me: Remember when you were a nurse? You couldn't give people pills outside of the bottle, and without a lid on it?  Did you ever do that for someone?
Mom: doesn't answer
Me: I think the nurse is doing what she has been trained to do, the same way you did.  What did the Dr and nurse say you should take if your pain is still bad after taking your hydromorph?
Mom: answers, and settles a wee bit.

I also spent 45 min washing her floor because we had loosened the lids on her cranberry juice (and waters) the way she asked us to.  Problem was she carried the cranberry juice bottle sideways from her bedroom to her living room as she walked with her cane (she can't use her walker because her arm is broken), so the juice leaked on the floor and left a trail through her whole house.  She pointed with her cane along the entire trail, until I told her I could see it fine myself thanks.

Today was a total of 5 hours of my time alone at her house (not including H and D23).  She's exhausting.  I came home, and went downstairs to be alone in my cave.  Here I am.

[Methuen]

Re: hydromorph crisis

11pm. Mom calls to say she can't live with her pain tonight without another hydromorph pill, and because I put the lid on the bottle (the nurse ordered me to), mom can't take another one.  She insisted I must drive over to her house to remove the lid so she could take another pill.  This means she is doubling her dose for tonight.  I believe it is more likely to be about the CONTROL: because the nurse  ordered the lid to be put on the bottle, mom's pain is now uncontrollable and she needs a second hydromorph pill.

Meanwhile, the discharge nurse told me that mom had only been taking one pill at night at the hospital to manage her pain.  One would think if one pill was enough in hospital, it should be enough at home.

I was going to lose it, so I passed the phone to my H.  So at 11pm he is driving to her house to open the bottle for her (she's in full-on victim mode) so she can take a second dose of hydromorph.  He knows to put the lid back on when he is done.

I'm shaking.  Plan to call the rapid response team tomorrow, and fill them in. 

I can't see my mom tomorrow. 

[mavis]

I am a geriatric registered nurse in a skilled rehab/long term care facility.  My advice about the hydromorphone would be to take it from her house and turn it over to the nurse, taking away her ability to use it as a tool to manipulate you.

I don't know where you live, but where I live and work, your mother probably would not have been discharged home, as she surely does not sound able enough to care for herself, and the amount of care provided by  carers coming to the house does not sound adequate.  Is she able to toilet herself.  Can she prepare something to eat.

You are not obligated to spend hours of your day at her beck and call.  She should be cared for by professionals who can give her 24/7 care.  You need to take care of yourself, put yourself and spouse in the priority. 

Loosening the tops of her meds and juices is absolutely not safe and not in her best interest.

I just reread this and it sounds harsh, but you are setting up your family for a failure situation.

Frankly, having a member of my own family with a cluster B disorder, I do know how difficult it is to step back and retain some autonomy for yourself.

Please continue to work with any resources you can find:  social work, physicians, APS ombudsman (usually a state office.)  In a short term rehab facility, she will not be able to run the help off like she can at her house. 

Right now because of the high COVID infection rate in my area, families are only allowed phone, facetime and window visits, so that would give you a buffer while you work out the details.

I wish you luck and lots of support.  Take care of yourself and let professionals take care of your mom.  Best regards, an old nurse.

[Methuen]

I don't know where you live, but where I live and work, your mother probably would not have been discharged home, as she surely does not sound able enough to care for herself, and the amount of care provided by  carers coming to the house does not sound adequate.  Is she able to toilet herself.  Can she prepare something to eat.  You are not obligated to spend hours of your day at her beck and call.  She should be cared for by professionals who can give her 24/7 care.  You need to take care of yourself, put yourself and spouse in the priority.  Loosening the tops of her meds and juices is absolutely not safe and not in her best interest.

OMG Mavis, thanks for reaching out to me (bawling).  Mom is able to toilet herself, although even before she broke her arm, I regularly clean poop off of the toilet seat.  She doesn't prepare anything to eat when she is like this.  She has had a lifelong eating disorder which has ups and downs depending on her level of emotional dysregulation.  Yesterday she ate 1 small yogurt and one piece of toast.  She tells everyone how little she is eating to get attention.  She has no appetite...she can't eat (said in victim mode). I have been bringing her meals for years.  She has meals in the freezer.  She chooses not to eat them at times like this.  A snowball will freeze in hell before she prepares herself a poached egg in this state of mind. 

I am in full on crisis myself, but I have been busy this morning.  I spoke with mom's Dr  office, and explained the situation.  Dr prescribed Tramacet if she demands more pain killers of me.  I'm not telling her I have the prescription, unless she demands more pills.  They gave me an appointment for her to see the Dr for Dec 30, so follow up is in place.  I also got an appt for myself to see Dr (same family Dr!) Jan 4.  I also have an appt lined up with my T for Jan 5.  I also had a 45 min phone call with our health dept's elderly services consultant, who works with the rapid response team, and will give them a script for how to communicate with my mom.
Lastly, my family is going to shield me from her the next while, so that I can never be alone with her. 

She masks her anger with everyone else.  She can be charming, witty, energetic as long as she needs to perform with someone else.  Then when she doesn't have to hold it together any more because they are gone, she unleashes her toxic dump on me.  Thankfully the elderly services consultant "gets it", so although today is her last day of work until Jan 5, she was going to do what she could to prep the home care team, and then indicated she would like to visit mom herself as a home helper in Jan and do some work with her.  She used all the right language, and even identified my relationship with my mom as an abusive one.  My big fear is that mom will refuse home care services in her house, because it feels to her like she is giving up control.  This person understands that.  Last time, mom sent them all packing saying she didn't need the help anymore. 

[Mata]

Wow, that text exchange could have been written by mom, seriously!  I can't even tell you how many similar texts I got from my mom last year after she was hospitalized.  I finally got to the point where I gave up responding to most of it.  I realized I was just feeding her disregulation, even if I was being validating. So I only texted her information she needed, or asked questions I needed to know.  But I think your responses were really good SET responses!  I think, maybe, your mom is just too disregulated right now for anything validating to get through to her. 

I had a thought on the pain pill issue.  If she feels her pain is uncontrolled and she needs more medication, then maybe the answer is she has to go back to the hospital if it's that bad, rather than you or H running around late at night to open her pill bottle, and let her take more than prescribed.  Probably, her pain suddenly won't be that bad, since she didn't like the hospital.

Similar thought with the home health care.  Maybe it can be presented to her that she either 1) has home health care and doesn't fire them, or 2) goes to assisted living.  In other words, she has the choice, but the consequence of her firing home services is that she will need to move into assisted living.  I think the key is to communicate that there is no third option where you play a roll.  I've had conversations with my mom where I literally said "there is no third option, I'm sorry."  It was so hard, and I got sick from doing it, but I had to for my own well being - as there was no other option for me either! 

I know this is so hard, I truly feel for you.  It's impossible to have a mother who will twist and wring you like a rag emotionally to get what she wants.  Stay strong, and keep trying to take care of yourself.   

[Turkish]

My big fear is that mom will refuse home care services in her house, because it feels to her like she is giving up control.  This person understands that.  Last time, mom sent them all packing saying she didn't need the help anymore. 

Not that this was an option in my mom's filthy and dangerous hoard home, but this attitude may get her put somewhere if she is deemed unable to take care of herself.

I'm not PDed, but I feel like writing a letter to my kids now if I get affected by dementia. Don't feel guilty and do what you have to do if I start treating them badly.

[Methuen]

Update:  mom is still receiving home care services, but she doesn't give them anything to do, so sometimes they only stay a few minutes.

Today when I brought her her groceries for the week (grapes, bananas, margarine, and vaseline for the inside of her nose), she was laying on the couch.  She hasn't eaten a real meal since she finished the food I brought her for Christmas.  Yesterday she had me pull all the leftover food from her fridge and put it into the compost because it was too old.  Since I buy her groceries, I know what she's eating.  The back story is that she was diagnosed with an eating disorder in her 30's.  

She's not sleeping at night.  Nothing new there really, because she's had a sleeping disorder her whole life, but now that she's supposed to be recovering from a broken arm (in a sling), eating and sleeping takes on extra importance.

She reported to me that she felt chest pain last night.  I responded "what did you do when that happened mom?"  Her: I took deep breaths.  I gave her the phone to call her Dr today, and she did, but reception said no one was in the office today and she should call back tomorrow.

She's running out of pain pills, which she's been taking without food, because that's just what she does.  As a consequence, the pain pills have triggered her stomach problems and she thinks her ulcer is coming back, and she's also suffering from constant nausea (therefore can't eat).  She told me today she was born with nausea.

I bought her a couple of cases of Ensure (nutritional beverage supplement).

Today she asked me with pathos and tears "can I pay you to look after me?"

I mean this in the most loving way possible, but I'm not up to this task even if it payed a million dollars.  I replied in the most loving way I could at that moment that I couldn't because I had to work and I have many other responsibilities (the truth).  

So she begs me to "stay with her", but refused assisted living 2 years ago.  I think I know what's going on here...

Meanwhile, I'm fielding phone calls from her health care providers almost daily.  It's amounting to hours of time every day.  She has no clue.  Even when I'm at her house (eg a 5 hour shift), I don't believe she has any perspective of time.

After my time with her today, I am still shaking, heart beating, mind whirling...

She's exhausting.

She is in full blow victim mode (poor me).  As for me, I don't really know  what I want in posting this here.  I think I just needed to vent.  

[GaGrl]

It is exhausting. I am fortunate to have my husband and relatives and friends keeping tabs on me, with all that's going on with my mom.

Today was the first day in 42 days that I have not been at the hospital with my mother. I do not need to see that hospital for a very long time. Mom is in rehab, having assessments, and is in a 14 day quarentine. I can call her and wave through the window.

No, you can't take on her home health care. I have learned what I can and can't do, and I certainly can't be her FT caregiver. Physically, it's too much for me. Mentally and emotionally, I just have limits.

Continue, with kindness, to repeat what you can do and that you will support home health and caregivers. That is healthy, for her and for you.

[Methuen]

Continue, with kindness, to repeat what you can do and that you will support home health and caregivers. That is healthy, for her and for you.

Thanks GaGrl.  Yes, repetition and the broken record technique is a good reminder, and one that I am using.

Three days ago, mom had another Rai assessment.  After her last fall over a year ago, she was quite hostile in her first assessment.  This one was very different.  She presented the side of her she wanted them to see.  It was quite something for me to observe. A social worker conducted the assessment, but an elderly care nurse (mental health specialist) was also present (I've reached out for her help).  They asked me to attend.  Honestly, ignorance (not attending) would have been better for my health.  Because mom isn't eating (eating disorder issues her whole life, which get fully triggered after every fall), the nurse asked mom if she had ever tried "liquid food supplements" such as "Ensure".  Mom said "oh yes, I'm drinking them now", which they were very relieved to hear, and then promptly made the appropriate notes on the assessment form.  After the assessment was over, and they left, I was helping mom with her grocery list, and asked her if she needed more "Ensure", to which she replied "Stop buying that stuff!  I don't want any more of it!" 

They also asked mom how the home care services were going, and if they were helpful, to which mom replied "how nice everyone was" (masking?).  They also asked her what time she wanted them to come in the morning to which mom replied "8am".  At this point, I asked if I could interject, because mom had just told me a day or two earlier she hated the 8am visits (my mom has NEVER been a morning person).  The day before mom had also threatened to cancel home care because one of the helpers was so "bossy" (the same one that came at 8:00am).  Mom did tell them one person had not been as nice on previous visits, but that morning she had been "very nice", and mom was happy.  This was an untruth, and I can only think she said it because she didn't want to look like a complainer.  She saves that for me.  Last night I received the following email:
"I would like to cancel the morning assist.  Today "X" came again at 8am to get me up again, but I said I finally had a night's sleep and stayed in bed.  Then she made French Toast!  Could you cancel the morning assist! 
I am going to confess I had my own mini-dysregulation after reading that email.  I will NOT be able to cope without mom getting home care assistance, and her cancelling home care is my worst nightmare right now.  Took about an hour to get myself under control.  Honestly, a typical toddler is possibly more independent than my mother currently.  I can understand why she lied to them about drinking the "Ensure" (thinking about the eating disorder), but why would she request "8:00am" when she HATES mornings, and I had already changed her morning time to 11:00am at her request?  Then when the morning assist comes again at 8:00am she emails me to cancel it?     She's getting in my head, and it's messing with me big time.  I was smoking mad last night.  I'm also very tired.  Could it be her vascular dementia progressing, or is it the BPD?  I spend from 1-6 hours with her every day for appointments, shopping, chores, and a million other supportive things (helping her with her new ipad), and I just don't have the emotional gas in the tank for the crazy making mind games.  So today, every time she asked me to do something home support could do, I gently reminded her that was something home support could do (point taken GaGrl).

I know it sucks for her too.  She's falling into depression again.  Weepy.  Normally with her other falls, she had a ton of friends coming to her house to help and visit socially, but with Covid, everyone's staying home, so she's super isolated and down. Feeling empty.  Yet she was able to communicate very clearly to the social worker and nurse she wasn't going into any supported living. She made that perfectly clear.  Meanwhile, the next day at another appointment, the physiotherapist turns and tells me mom needs to do an exercise where she straightens her arm (out of the sling) each day.  My instructions were clear: mom can't do this alone, so this is yet another job I get to take on. 

I would really like a life.  A big problem is that while this may be temporary (two more months in a sling), it's only temporary until the next fall.  Every fall is worse than the last.  She doesn't eat.  Doesn't sleep.  Makes terrible choices (eg using her cane properly only when the phsiotherapist is present to watch).  Doesn't take care of herself.  So weak she's complaining it's hard to get off of the couch.  Needs constant attention, and doesn't respect any boundaries with me (eg texting me at work). 

She's impossible.  And I'm so sick of the question "does your mom live alone?"  People just have NO CLUE.  How nice it must be to have the luxury of being that clueless.

I'm kind of struggling to look after my own mental health.  As we all know, self-care takes time, and as that is in short supply.

[Turkish]

Yet she was able to communicate very clearly to the social worker and nurse she wasn't going into any supported living. She made that perfectly clear

At some point, that might no longer be her choice.

The health workers and social services are going to follow the book. Have you thought about reaching out to the SW? Since your mom is still legally in charge of herself, she can still lie, but at least the SW will be aware. They Are also trained to deal with this, and I guarantee have dealt with similar situations. The evaluation is to determine if your mom is capable of making rational decisions for herself.

[GaGrl]

I agree with Turkish. The more you can be transparent with the social worker(s), the better they can be assess your mom's decision-making capability. Perhaps you forward her emails changing her mind with a note to the DR along the lines of, "I am perplexed as to why my mother is changing her mind so quickly after a decision. Have you encountered this before? What advice do you have?"