BPDFamily.com

Mother has macular degeneration as one of her 100 ailments (ok a bit of hyperbole but not as much hyperbole as you might think).  So last Friday I drove her to one of her routine appointments for her monthly macular degeneration shots.  There is a .05% risk of Endopthalmitis (risk = blindness) with this treatment.  She's been receiving macular degneration treatment for years (like 8-10?), and last Friday she got unlucky with the shot in her left eye.  By Tuesday she had an eye infection and it's yes, it's a medical emergency - endopthalmitis.  
I was with her when she received treatment for the infection on Tuesday.  It was a horribly invasive and painful procedure for her.  She was actually somewhat brave through it - no choice other than blindness - and it was quite a painful procedure because of the seriousness of the infection.  I told her how proud of her I was.  I felt stronger then.  The post - treatment has been 2 sets of antibiotic eye drops every hour on the hour.  So H and I have been setting alarm clocks through the night.  Problem is - after my turn to do the drops - I never get back to sleep.  So I've essentially gone 2 nights with no sleep.  H has had mom in the mornings which have included follow up appts with opthalmologist each day, as I have gone to work.  I have been blessed to have  to work each day (I'm actually retired), so was able to get "space" during the day.  But after two nights with mother, and evenings together under a blanket with her babbling incessantly about nothing in my ear, I am exhausted.  A hot mess doesn't describe it.  I am bawling (in a private room).  It's like 60 years of not having a mother available to me, but only being her caretaker has finally come to the surface, and the tears just won't stop (H is caring for her while I "feel my feelings").  We're in the midst of a kitchen reno which means the entire house is upside down (because we are also trying to paint the entire interior up and downstairs), so chaos is everywhere.  We don't have a room to escape to.  Right now she is in the living room (plastic covering all the furniture for painting) watching a hockey game with H while I am hiding on my computer.  

I am overwhelmed with her needs again.  It doesn't matter how much I do.  It is never enough.

Her body is a textbook case of "the body keeps the score".  She can't walk.  She can't see.  She can't hear.  She can't think well in the best of times (mild cognitive dementia).  She refuses offered assisted living - you get the drift.  She has heart, vascular, stomach, intestinal, Parkinson's - so many complicated problems plus the emotional trauma - PTSD, anxiety, eating disorders...I could go on.

I escaped to our camping trailer (outdoor kitchen during the reno) after her friend dropped her off at the house tonight, and just screamed and bawled.  It just hurts so much to have a mom who was unavailable my whole life, and so hurtful when she perceives I don't measure up, no matter how hard I try.  And I have tried so hard.  My god have I tried hard.

Thankfully she has a network of friends.  She is different with her friends than she is to me.
 One of them has been doing the "day shift" from noon - 7pm and chauffering mom to our house for the 7pm - noon the next day shift.  It is still too much for me.  Not enough space.  Not enough sleep.

H was clueless a few hours ago, but I think he's catching on now.  A bawling wife is hard to miss.

I see T this Saturday.

Her abusive father lived until he was 99.  Her sisters are all in their nineties.  Longevity is in her family.  But she seems a lot frailer than the rest of them.  They don't fall.  She's had many falls, and is incredibly physically and mentally fragile.

I'm just all over the place.  A bit of a shipwreck.  So so so much pain for the mother I never had.  So much grief.  H didn't know how to console me in the trailer.  I told him I just had to go through it.

So much responsibility.  So much burden.  So much pain.  No gratitude.  No reciprocity.  No unconditional love from mom.  All I do is never enough.  Just never enough.  Always sucked into the black hole. 

Tomorrow H works, and I take her back to the opthalmologist.  I know I will find the strength by morning.

I don't know what to say that is helpful but I can tell you I read your post and I hear you, really hear you. I'm sending you one of these  :hug: and I know, it's  :cursing: it's not fair and it hurts. You are enough and the community here see it.

I hear you too.

I think there's only so much we can humanly do for anyone. You need sleep. I am sad for your mother that she has so many ailments but being a 24/7 nurse is beyond possible for anyone. Your H is amazing for helping but you need him too, and the two of you need your time together.

I understand how hard it is to say no.

The lack of a caring mother is a void we know well. It then becomes up to us to be sure our basic needs are met. We can't look to them to say " please get some sleep dear". Your mother also grew up with abuse. That's not an excuse for how she treats you, but she too didn't have the love from a parent that a child needs. My mother seems to have a great need to be taken care of, as if maybe our mothers are looking to their children to meet that? I don't know. But the dilemma is your mother needs constant nursing level care if she has to have medicine every 2 hours and for you to get sleep, it seems to be time to look into home health care for her if at all possible- someone to come in and help her at nights so you can sleep.

My heart goes out to you, Methuen, and to your H. At one point during my mom's home hospice care, I broke down completely with my husband -- it was the point I fully realized how inevitable and imminent was her death, and how helpless I felt in the face of it. Add to that my lack of sleep and the physical exhaustion of what was required -- it was ugly. And I know my husband felt so helpless to help me -- although what he was doing to keep the household going was invaluable.

I'm so sorry the eye injections resulted in an infection. My mom had MD also, and she had injections for years, but no infections.

Your mom is so fragile. I cannot see the conversation about assisted living being delayed much longer -- but there is still a wait list, right?

In the meantime, to get through this period of hourly treatments, can you get a caregiver/CNA to stay during an 11 PM to 7AM shift, even if just a week? You can't continue with no sleep.

Methuen,
We hear you and feel sad for how painful it is to care for a mother who has zero appreciation for all you have done for her. I am wondering if you have arrived at the point in which your mother needs 24 hour home health care.

Oh Methuen, I’m so sorry you’re going through this. Your post really hit me… you are doing all you can, and you will always know that. I took care of my nonBPD mom in her final years. Even with a functional, appreciative mother, it was exhausting! For you it is all the more exhausting because of her BPD and reminders of the caregiving you didn’t receive from her. Sleep is so important! I eventually had to move my mom to a group care home, because I couldn’t manage (and needed sleep… My mom had steroid induced mania, and would call me on the phone from the other room at 5:30am to put in her breakfast order lol) This will not last forever, although I’m sure it feels like it’ll never end. Wishing you peace and time to rest and heal, but in the meantime, let it out when you need to :hug:

BTW my BPD SIL’s behavior really kicked in during this intense period of caring for Mom. Whew!

Hey Methuen,

How are you doing today? I hope you were able to get some sleep. So many good thoughts have been shared, and we all care about you.

 :hug:
Wools

Wondering also if you got some sleep. I always said I could handle just about anything if I got my seven hours of sleep a night. So you can imagine what a nutcase I was when Mom started hallucinating and having paranoid delusions that had me up with her five times a night!

 I think the home hospice group put her on Seroquel, Haldol, and Ativan to allow us both to sleep. They understand the complexities of elder care.

I just wanted to send you some big :hug:  :hug:, I really hope that you managed to cry it out? I say that because I really feel that grief can be empowering when it is properly witnessed and shared.. it will never make up for the unfairness of what you have lost, but at the very least it can be a form of honoring how worthy these feelings are.


How did your therapy go? was it helpful?

And I'll add my voice to the others and say I hope you managed to sleep better.

Thanks for checking in.  I'm so grateful (crying).

I slept Friday night.  Saturday (yesterday) was a better day.  Today is not.  Craziness.

Since Tuesday she's had 24/7 care because of the all the drops, ointments and pills she needs to take every two hours or less.  Because she can't see well, and she has Parkinson's, she can't do it herself.  Somebody always has to do it, so it's been intense.  She spends the night at our house so we can do the bedtime routine (drops and ointments), and we have her all the next morning.  At noon, we drive her back to her house, where a friend meets her and stays for the afternoon to do all her drops.  At 6 or 7pm we get her again for the evening, and the night, until noon the next day again.  

I have set up a "med notebook" at her house, so everyone records what time they are dispensing her meds.  That way I can see what is actually happening and check on it.  So far, so good.

The schedule of drops and meds is complicated.  Some are every two hours, some are 3X/day, another is 4X/day, another is bedtime only.

Yesterday morning she got up at 6 am, and thumped her cane down the hall to the kitchen.  She yells "hello" a few times.  H and I played dumb and stayed in bed.  It was pitch black outside still at 6am.  After about an hour of her thumping around and going to the bathroom multiple times, she went back to bed and fell asleep.  We woke her up at 9am to give her the first set of drops for the day.  

Another day, she opened our bedroom door (which was closed) while I was getting changed.

Once she is up and dressed, she sits in a chair, and has us running around to do everything for her.  Bossy.  Ordering.

She's almost fallen twice at our house in the last 12 hours.  One time was with H leaving the back door to take her home for the noon hour "shift change".  She would have gone down on the concrete sidewalk if H hadn't had her.  The second time was this morning when I was assisting her to get from the couch to the computer where her grandchildren were going to FT with her.  If I hadn't been supporting her, she would have gone down on our hardwood floor.  

In the past she has broken bones and had 3-4 month rehabs when she has had a soft landing on grass, never mind a hardwood floor or concrete.

Our house is also upside down because we are renovating a kitchen (we have a contractor), as well as painting the entire house ourselves upstairs and downstairs. We've been without a kitchen for over 6 weeks, and cooking from a camping trailer outside.  Furniture all over the house has plastic covering it.  Our contractor  got Covid and so the project was delayed over 2 weeks whilst he recovered.  Lots of bumps with the reno, and the house was in a state of chaos before mom arrived with her eye crisis.

We are scheduled to leave on a trip in 4 weeks with our 2 adult children, and a dear family friend who recently lost her husband.  The worst case scenario is that mother falls again before our 2 week trip.  The trip is a scheduled wellness trip for all 5 of us.  I desperately need respite from her (as far away as possible), and the other 4 people each have their own wellness needs as well.

She is completely overwhelming.

The good thing is, that one of her friends, has taken up the baton to be the "scheduler" for her friends who start the "noon to 6 (or 7) shift, so we can go to work, or have some time to work on our reno project.  So we have had 6 hours each day to ourselves.  

Despite this, we are still overwhelmed.  When H drove her home today for the next shift change (her friends go to her house), he didn't know she was taking her meds out, and putting them away.  So he opens the newest prescription bag, and can't find the drops.
 He asks her.  She doesn't know where they are.  He calls me, and says the drops aren't in the bag.  I said yes they are in the bag because I put them in there.  Suddenly he sees them on the table behind her.  She had taken them out of the bag, but said she didn't know where they were.  It's just a gong show.  

Monday morning, I am phoning home care to see make my case for help.  I can't predict how that will go.

Tuesday, she sees the opthalmologist again, and then the office is closed for 10 days.  

Meanwhile, just trying to hold it together, and be cheerful and helpful in her presence, while setting non-stop new boundaries every day.  
eg.  
Mom: I was talking to ________ (my aunt) and she said _______ (my uncle) now has to wear diapers.
Me:  too much information mom.  We don't want to be told other people's business unless it's them choosing to tell us directly.

She is really enjoying this 24/7 care.  The way I see it, all these medical problems just reward her because she thrives on the attention.  She seems weaker and more frail every day.

It's just exhausting.  I'm also frustrated.  Sometimes I shake.  Sometimes I cry.  Still, yesterday was a better day for me and I was emotionally able to manage.  Today is not so great again.

Just...struggling.  What would make it better is having more space from her.  But I'm in a leg hold trap to her with all her medical problems.  So space just isn't possible.  

 

I'm so sorry you're going through this. This would be so triggering for me to have to be the caregiver again. Would it be possible for one of your mom's friends to do a night shift so that you and your H could get some rest? It doesn't seem fair that this should all land on you. Do you have any siblings that could help? Sending you big hugs  :hug:

Thanks wmm. It is triggering for me too.  As I'm caring for my geriatric mother and doing all these kind things for her including keeping her for almost 18 hours a day including over night so she can get all her eye drops and medicines on time, I am remembering many bad memories from childhood all the way up to recent times.
It is hard to have to be so helpful to someone who treated me badly, and was emotionally abusive.  It is internally conflicting, and causing me angst, nightmares, and loss of sleep.

If she wasn't my mother, I would not choose to have a person with her personality in my life.

I am an only child.  There is no other family.  Her siblings are all in their 80's and 90's and live 800 miles away.  My father died 15 years ago from Parkinson's and dementia.  She treated him horribly until he went into complex care.  She would yell and scream at him that he was a retard.  When he went into complex care, she put her nurses cap back on, and spent time with him there every day and looked like the devoted wife.

All mom's friends in town are also in their 80's and 90's.  She picked the best kinds of people to be her friends, the type that will do almost anything to help.  One of them has organized so that each friend has a turn at "babysitting" her (my term) from noon to 6 or 7pm to give her all her drops and pills on schedule.  But they are all old too, and only 1 of them drives at night.  I would never ask any of them to spend the night at her house.

I am already nervous she will "burn out" her friends, and they will become too tired.  They also have their own health issues, and lives.  And they're volunteering.

Tomorrow I am contacting "home care" to see what support I can get.  She has received home care in the past.  We will see what comes of that.  

Thanks for your suggestions, and for caring. :hug:

Methuen, the "not child" aspect is especially difficult. When my sister was diagnosed with State 4 metastasized breast cancer at age 31, I told her she used to get through it, she couldn't leave me alone with Mother. We laughed, but we were serious -- we knew the difficulties of my mom's damage from a uBPD/NPD stepmother and her early childhood trauma from losing her beautiful, vibrant, loving mother to a toxemic pregnancy.

So both my parents were only children, I am the only w driving child, and I have an only child.

Limited, much?

Thinking of you and hoping you get some real relief soon. It seems like your worst nightmare has come true, as your mother is staying at your home temporarily.
 
My aunt demanded that her daughter who was a senior citizen and in poor health herself take care of her. All the home health aides eventually quit because she treated them so badly, and my aunt went into a nursing home. My cousins had someone from the state come and certify that my aunt was eligible for nursing home care. (I believe you had a similar assessment for your mother for assisted living which your mother refused. I am not sure your mother can refuse nursing home care the way she did assisted living.) I went to visit my aunt at the nursing home once and it was obvious she was the most able bodied and mentally sharp resident there. The nursing home told her children she was the most difficult person they had there (despite the fact she could feed herself, get around without assistance, and easily participate in conversations) Maybe it is time to touch base again with the elder care specialist, as your mother's ability to take care of herself and live on her own has seriously deteriorated.

Keeping my fingers crossed for you, and wishing I could be more helpful.

Methuen,

I am so sorry.  What absolutely overwhelming situation. 

I had a few thoughts which may or may not be of use.  I had always thought one needed a terminal diagnosis for hospice services, but a friend of mine got them for her late mother based on her frailness and Parkinson's. I wonder if that might be available to you.

I know you want to respect your mom's wishes and God knows how impossible it is to reason with these folks, but I'm wondering if just for the sake of your sanity, it would be worth establishing in your own mind what would be the tripping point for obtaining a conservatorship. 

It is indeed fortunate that your mom's friends are stepping up, but I hear you that their own ages and lives mean their help is not necessarily sustainable. I recall when a late colleague developed a brain tumor he really didn't ask as much as inform me that I needed to sign up for a slot to drive him to work.  (I did was not able to do it because of my own work schedule and truly did not mind the demand element.  In fact, I'm glad he was able to wrangle coverage for every day both ways though he lived quite far from work.)  In any case, there is a website that facilitates caring for an ill person - https://www.caringbridge.org/how-it-works .  The Planner portion might be useful at some point, although it sound like you and your mom's friends have a good handle on the schedule at the moment.  Forgive me if you have already addressed this, but does your mom belong to a church/temple/synagogue that might provide some assistance as well?

I truly feel for you and am glad your husband is in your corner.   

One more thought which may or may not be of use:  You had mentioned your mom had been on an antidepressant. I realize she may be noncompliant making my suggestion infeasible, but I thought I'd mention that Trazadone has become quite popular for seniors who have trouble sleeping. It's a tricyclic and fairly sedating. The doctor prescribed it for my late mother to address her night-time auditory hallucinations.  It might also take the edge off a bit during the day.

Going on the trip with your family sounds very important. When my mom lived with us and we had to travel, she had a temporary “respite stay” of a week or two in an assisted living facility (they also have them in nursing homes, I think). It may be a good way to ease her into assisted living, (though I realize she won’t be happy with anything!)  I hope the home care people can offer you some help. Senior services resources are so important… you need all the help you can get. I hope your mother’s eye condition is resolved soon, so you get some relief  :heart:

Thank you everyone.  Just - thank you.

I initiated the home care request early Monday morning.  Each day I seem to reach a new low.  Then I'm ok for a bit.  Then I'm overwhelmed again.  Then I'm ok for a bit.  Then I hit another new low.  Anyone know what I'm talking about?  But the falling apart bits are coming stronger and more often.  Like labour pains.  How many minutes between pains?

This morning I got desperate.  One thing about being the daughter of a borderline, is you figure things out early.  I was getting the "sense" that mom's situation wasn't a priority for the home care people.  So I spent all morning on the phone communicating with home care, her doctor, her opthalmologist office, emails to home care, and when still nothing, I went to the home care building.  I explained I didn't have an appointment, but they brought someone out to see me. I've been falling apart for long enough, that the rain came natural when I was speaking with the intake RN.  Both my H and I are scheduled to work tomorrow and there is no one to give her the meds in the early morning or late at night.  When I received the phone call they were going to give her 15min 4X/day to give her the eye drops, I again fell apart.  Tonight I cooked our first supper in 10 days.  I haven't been eating, sleeping, or even finding time to brush my teeth, let alone the next level of self care.  OMG, cooking a dinner felt surreal.  "Space"?  What's that?  We've been surviving on fried eggs and KD.  Some days all I was eating was chocolate bars.  There just wasn't time to look after myself.  As you all know, the needs are a black hole.

The best part is that there was enough chaos in our home with the renovation project and construction everywhere, that mom is thrilled to be back in her own home and her own environment.  Home care means she gets to sleep in her own bed.  She's happy about that. 

When I told her the good news that home care was starting tomorrow morning, she clapped her hands together and said "oh good".  Then about 2 minutes later, with one of her friends present, she says to me, "this means I won't see you anymore."

 :cursing: BPD.   :cursing: abandonment issues again.  We've had her in our house for 10 days straight, treated her so well, she's had 24/7 care, done everything humanly possible to try to save her sight, and now by saying all waify "this means I won't see you anymore", it's as if all the care we gave still isn't enough.  She doesn't have faith we will still be present.  I know I'm running on empty, but that still REALLY bothered me.  I know why she said it.  I'm still struggling with my reaction to it.

I called all her friends who are amazing people, and who for the most part, might actually have some limited insight into her.  Every single one of them was relieved she gets home care.  Not one of them said "oh you didn't need to do that.  I could do it for her".  I was so relieved that they were relieved.  I need this home care thing to work.  Her friends all told me they would continue to check in on her.  I thanked them all for being such good friends to her, and suggested the only time they shouldn't visit is during a "specific" 15 min interval when home care is there in the daytime.  The other 3 home care stops would be outside of the their visiting hours.  They all thanked me for keeping them in the loop.  I struggled to hold it together on the phone even with them.

I'm still processing that home care will put in her drops for her.  I am SOO grateful.

I am so glad you got some help for her.

The splitting is hard. No matter what we try to do, the one time we don't do something- that's the sum of it.

I know it's that we are the closest relationship to them that makes it safe for them to project their frustrations, but it's also discouraging to hear.

I am so glad you got some help and some time for you!


 

Such a relief that you got home health care for your mother. Hopefully you can make the home health care permanent. Will you be making arrangements to take the vacation you planned while making it clear you will not be coming back from your vacation for any reason, that home health care will be fully in charge while you are away?

Celebrating the four times a day help with you, Methuen, and your tenacity in making it happen.   |iiii

The frustration and hurt at repeated reminders that nothing you do is ever enough is so relentless.  I look forward to the creation of an artificial intelligence app that translates (and overwrites) pwBPD slings and arrows into less jarring expressions of need. 

I hope your vacation provides some much needed respite and a chance to clear your head. 

Just a quick update.  It has been a week since I was able to get home care to give mom her eye drops four times a day (down from every hour on the hour).  Since securing home care she has been back in her own home.  

My recovery has been miraculous.  I am finding time to eat meals again.  We are making progress with our renovation project.  I am not overwhelmed any more.  The space from her has allowed me to bounce back, although my sleep habits have not yet recovered.  Nightmares.  

It is not lost on me how much better I feel when I spend less time with her.  At this point, her health issues are a way of controlling my life.  It’s the things she says.  I doubt it is possible to have a healthy relationship with an untreated pw BPD.  It’s all about what I have to do to manage the relationship and my own wellness.  It’s so hard.

Yesterday I shopped for and delivered her groceries. It was a fairly quick stop.   A friend was bringing supper to her house for both of them.  Awesome.  In the past I would have felt more guilty that it wasn’t me bringing her that meal.

It is just under 3 weeks until we are scheduled to go on our trip.  Fingers crossed that she doesn’t have another medical emergency just as we are ready to leave.

So far so good.

Thank you everyone for the support and well wishes.

Glad to hear you are doing so much better. Important observations about the ways that you feel so much better the less time you spend around your mother. In the last years of my mother's life, I would just end the phone conversation as soon as it turned toxic which only took a few minutes. I do believe our mirroring neurons get activated very quickly when we have been abused, especially in the presence of a mother with BPD. I hope you will continue to feel better. So good that her friends are helping and hopefully this will continue.

The waif is hitting hard.

Mom: "I don't see you any more"

(Not accurate.  After almost 24/7 care at my house for 10 days, and then getting home care to give her medications 4X/day at her house, I've got it down to 3-4 full-on contacts per week, not including the daily texting)

Me: I've got to finish our house mom so I can live in it again! (We're doing a reno and the house is utter chaos - which she knows because she had to sleep in it for 10 days)

Mom: I keep the TV turned on so there is something alive around

Me: (really?)that's good (my brain is thinking that there would be lots of interesting people and activity if she accepted assisted living)

Mom: Yesterday _______helped me with pot pies and she made me lay down while she cleaned up my kitchen.

Me: (why is she telling me this? Aarghhh) lucky you

On another day:

Mom: Four people a day coming is too much for me (she's referring to home care 4 X 15 min stops daily to give her meds)

Me: I thought you meant you were doing lots of entertaining!

Mom: I wonder how much that's going to cost me? (The BPD sidelong glance came with that comment)

Me:  (feeling heavy FOG) you gotta spend your money on something mom!

She's brought up the cost 3 times now.  She has lots of money.  She's just cheap, unless it's on something she likes and wants.  

Mom: I'm going to tell (opthalmologist) that 3X a day is enough.

Me: (really?  You're a doctor now?) If your eyes have improved enough she may decide that.

It's exhausting.  At her appointment this week, she still can't read the big E on the vision test.

But her eye pressure is back to normal.  The infection is gone, but the inflammation is still present.  She can distinguish how many fingers are being held up at a distance of 4 feet.  She reports she can see colour on the TV.  I've got her doing a puzzle.  It has big size pieces. But I don't really know if she's doing it, or if her friends are doing it.  She lies about everything, and she had trouble doing the last puzzle (when she could see).  But she was bragging about how much puzzle she completed.  

I was a suffocating hot mess while she was living with us at the house, and we were giving her eye drops every hour around the clock, and I wasn't sleeping or eating.  Even after the eye drops weren't needed at night any more, I still couldn't sleep with her in the house.  The nightmares came back. As soon as home care started and she went back to her own house, and I was able to get on with the reno project and my own life (and have s-p-a-c-e), I bounced back to baseline pretty well.  It's just remarkable what an emotional toll having a BPD parent can have on our mental health.  I live in perpetual fear of the next episode.  Not to mention the next comment.  We leave on our trip with our 2 adult children in 2 weeks (hopefully).

I can't help but think about all the people out there who share our struggles, but don't know about BPD, haven't found this website, and don't have support.  I don't know how they do it.

I so identify with the internal dialogue vs. what is actually said out loud!

Has your therapist suggested complex PTSD to you?

No, but the elderly services consultant I speak with has.  Thanks for bringing it up.  I will ask T about this next time I see her, and maybe do a little research in the meantime.

I got a phone call from a home care worker a couple of days ago telling me that when they entered the house, they found her on the floor in her living room.  She reported that nothing hurt.  When I called mom to talk to her she said she had spilled marmalade on the floor, and bent down to clean it up, but lost her balance and went down.  She has utterly no balance or strength any more.  Both H and I have found pills on the floor in different rooms of the house.  I once found a pill on the floor beside the toilet and she wanted me to put it back in the bottle.  I said no.  At least with this fall nothing was broken.  She went down on an area carpet.

Another time I was there she was looking for something in a box, and dumped the entire contents on the floor.  Of course she cant get down there to pick it up, cs she doesn’t have the strength to get up again.  It’s really sad and pathetic.

Friday at work she called me to tell me about a problem. I told her I was at work and asked her to call H.  She called him to say that she needed more drugs because she was out, but she had forgotten to get refills from Dr.  (probably didn’t want to talk to him after he so unfairly failed her on her drivers medical exam).  H pointed out she had enough drugs for the short term, and she could call the Dr on Monday to ask for more drugs.  In her waif voice she asked him to do it because she has trouble getting her words out (mini strokes).

He replied in a kind voice that if she wants to live independently, she has to be able to do some things on her own.  (She immediately changed the topic)

Was it ok to say that?

Your husband sounds like a sweet and patient man. So is mine, and he was such a help and support during g the last three years my mom was alive.

Yes, I think what he said was entirely appropriate. It is the reality of her situation right now, much as she continues to resist it.

Just my two cents, and feel free to correct me if I’m mistaken, but the overall impression that I am getting is that your mother is only able to refuse assisted living because she has so many people enabling her. It sounds like she has attracted into her life a lot of friends who have “rescuer” tendencies.

You nailed it Couscous.  She attracts friends who will take care of her.

Having said that, not one of them disapproved of getting her home care, or volunteered to help her  out so home care wouldn’t be needed, if I’m getting my drift across.  I suspect  they were relieved.

We do a ton for her, but we can’t do everything.  She pretends to us that she manages fine, but I knowfor a fact that she asks her friends to do everything else she needs help with.  She gets everyone to do as much as she thinks she can press them for.  She has a lot of friends, so between us and all her friends, she gets most of her needs met. (Her emotional needs can never be met).

I believe her friends don’t know how to say no to her, because they are kind people.  Who can say no to an 85 yr old weak waif? Some of her friends have been friends with her for decades.  They are too good (as people) to bail on her now.

I think that confirms the picture you probably have in your head (of the situation).

If she didn’t get all this help, she could not survive living independently.

Methuen,
You are describing what is so frustrating about dealing with many highly dysfunctional people: They surround themselves with people who will enable their dysfunction. For example, my sister with NPD surrounds herself with other narcissists, people who are easily taken in by her charm, and flying monkeys who will help her with her smear campaigns and dirty deads. Dealing with the army of enablers can be so overwhelming and frustrating because you can't really influence the people your mother so carefully manipulates so she does not have to go to assisted living. 

What I am curious about is what you think would happen if you stopped helping and started saying no?

Two things:  
1) she has to ask her friends to do more, and/or
she asks for help from old forgotten acquaintances
2) the waif gets even waifier, before the witch appears

Exactly.  These are kind, caring, helpful people.  She only cultivates friendships with these kind of people.  She can’t stand strong women who have confidence and opinions.  She likes the nurturing quiet helpful types.  I have learned which one to be around her.

Last week, out of the blue, she texted me “I only have caring people in my life”.  No other  comment.  I suspect the Queen was saying that to have such good people in her life, she must be a good deserving person.  Who knows.

Around the time she was transitioning from staying with us to getting home care,  she said “I have nobody”.

It changes as quickly as her mood.

H and I try to manage how much we do, and leave her to her friends/enablers to do the rest.  She says things like “______(friend) and I agree that we would rather die (or commit suicide) before we go to a home.  Who knows if it’s true, but I leave her plenty for her friends to do.

Ah, I see, so she’s using emotional blackmail in order to to have her way, and it sounds like part of you fears that it may be more than just an empty threat. It does sound like there is a whole lot of FOG  (fear, obligation and guilt) going on here.

My mother does this too- surrounds herself with people who enable her. She also does this with her hired helpers- only keeps someone if they comply with her. If they set any limits or boundaries she decides she doesn't continue with them.

Several people have recommended assisted living but she finds some way to refuse it. Even if it would benefit her, her need to be in control makes this not a good fit. She will not cooperate with regulations. She's the boss.

Waif is the hardest for me. She says " I wish the grandchildren would visit". I understand this but it's not a priority for them. When I visit, the first thing she does is enlist me as a servant. I don't mind helping her. I would do helpful things regardless but when I visit, she is the Queen and I am a lowly serf, only there to do her bidding. I must not ask questions. I must simply obey. It's emotionally abusive. What she wants is for my kids to attend to her. We just can't visit and sit and have a meal. There's the requests to do things for her. It's not that we wouldn't do it- but it's not the thing she needs done that she wants. She wants the "doing things for her". My kids would be helpful too. None of us want to say no to her or disappoint her.

Methuen,
It sounds like this is all about setting boundaries about how much you will do for your mother which you are doing while trying hard to limit how much your mother's mistreatment of you and others bothers you. I was terribly upset by how my mother took advantage of so many kind caring people. After she died, I wrote all the ones I knew about thank you notes and invited them to the events honoring her life. I so wished I could have been less emotionally upset by how my mother mistreated me and others until the day she died. I think it is normal that the more time we spend with an abusive parent, the more upset our nervous system gets which is telling us we are not safe. It is like the fire alarm gets louder and louder the more the blaze spreads and the longer it lasts. I am feeling so much better now that my first legal battle with my sister is over. I realize I had limited abilities to calm my nervous system while my sister had some real control over my long term wellbeing. I keep hoping that soon your mother will be forced into some kind of permanent long term care, and you will only visit  when you choose to do so, and be able to leave as soon as you need to. When I visited my mother when she was temporarily in a rehab center, I came infrequently and left quickly when mom became abusive.