Entering a new phase with my mom

[Sneezy]

My mom's health is getting worse.  She has very bad macular degeneration, and really can't see worth a darn.  Her mobility is getting worse. And her hallucinations are now pretty much non-stop.  Mom is convinced that her apartment is overrun by cats and birds.  DH and I went over to see her late last evening, because she was so distraught.  She was convinced that the cats in her apartment were pooping and peeing everywhere.  She had stripped her bed and was washing everything.  She handed me some dryer lint wrapped up in a paper towel and shrieked at me that it was "cat sh*t"  So things are clearly headed off the rails.  Mom is currently in independent senior living, with no higher level of care available at this facility.  She could hire caregivers to come in and handle her meds and check on her every day, but she won't agree to pay for this service.  So it is only a matter of time before the manager at independent senior living decides that she can no longer safely live there, and he will then give her 30 days notice to move out.

If it was just a matter of mom having dementia (I am pretty sure it is dementia with lewy bodies and I have gotten her an appointment to see her neurologist in a couple weeks), that would be one thing.  But her underlying covert NPD is what is just overwhelming me.  Mom is angry with me.  Everything is my fault.  She claims to be upset and distraught because I don't see her enough or call her enough or take her out enough.  She is constantly asking to come over to stay at my house, either for the day or overnight.  I work from home and she has this idea that she can just hang out here while I work. Absolutely not!  First of all, DH would move out if mom moves in (and I wouldn't blame him).  And second, she is harmful to my mental health.  My mom may have dementia, and I feel sorry for her because of that.  But she is also a mean, nasty, hateful, terrible person.  She is negative and she sucks the joy out of me and fills the space with her anxiety and hate.  I can barely stand to be around her.

What do I do?  I am going to try to take her to her family doctor tomorrow for a test to rule out a UTI.  I am taking her to a neurologist in a couple weeks.  But the bottom line is that mom won't take her medication as directed, her eyesight is so bad that it is likely that she is mixing up her meds, she won't pay for an aide to come in and assist her, and she won't even consider moving to assisted living.  I am so afraid that I am going to get a call one day saying "come pick up your mom, she's gone off the deep end and can't stay here."

I wish she would just pass away.  Isn't that a horrible thing for a daughter to wish about her mother?  But I truly feel like the universe would be a better place without her nasty, negative energy being here.  And I would certainly sleep better without waiting for her next round of crazy to start up.

Mostly I'm just venting.  Although I'm happy to take any advice you all might have. 

[DaisyGirl77]

Get her into the ER. Seriously. I don't think this is one that can wait a few weeks.

I've been in a similar situation with a suspected BPD friend who also has bipolar II. Long story short, she went into bipolar mania with psychosis in a slow, three day descent and she was sent to the hospital for "dehydration" (cuz she believed she was completely sane and was the only way we could convince her to get medical attention while also keeping her calm and cooperative).

You might need to call 911. Explain the situation. Tell them you have an elderly mother who's been hallucinating her apartment is filled with cat and bird poop and won't listen to you so you're hoping they have someone who can talk sense into her and have her opt for medical help...by way of UTI testing or whatnot. They have staff who are trained to recognize people in mental health crises.

As for you, find a friend of your mother's (or yours that your mom doesn't know) and play good cop, bad cop. Feed into the splitting your mom's done to you—why fight, right?—and have the other person sweet talk them into cooperating with the EMTs.

That's what I did with my friend. It worked like a charm, especially since I could warn the EMTs NOT to mention the psych ward or anything related because "we've been here for an hour and we've convinced her to go to the hospital for dehydration cuz she's severely dehydrated." I can't say enough good things about the ones who came that night.

In case my point got lost, this is an emergent situation and she needs to be checked out ASAP. They'll be able to run all the tests necessary while she's there, and you can set up longterm care in the facility that best suits her needs while she's in the hospital.

[Rebel13]

Isn't that a horrible thing for a daughter to wish about her mother? 

Welcome to the Bad Daughters Club!  LOL

In all seriousness, I'm so sorry. It's a terrible situation. I'm not surprised you are wishing for the end, for both of you.

What I would do, is start looking into the process of guardianship where you live, and researching living situations for her. It definitely sounds like she would qualify for a memory care unit. If you or another family member get guardianship, she won't have to "agree" to anything. If she were not such a difficult person it might be worth trying to cajole her into making these changes herself, but she sounds so adamant and difficult to deal with, that probably won't work and would be so much effort for you. Getting guardianship is so much effort, believe me, I have done it (not for a parent). But once someone else is in charge of her affairs, things can be arranged and paid for so that she is safe and the burden of her care does not fall on you even for a minute. There's absolutely nothing wrong with handling the situation like that, when you are talking about someone who never behaved well and now has a terminal brain disease.  Good luck, keep asking for help and ideas, and take care of you!

[Sneezy]

I got mom into her doctor and we are waiting for the test results to see if there is an infection.  However, the doctor did tell me (out of mom's hearing) that she has dementia and it appears to be progressing somewhat rapidly.  He feels that mom needs a higher level of care, sooner rather than later, and that at a minimum someone has to witness her taking her medication as he doesn't think she is taking it correctly.

DaisyGirl77 - The doctor said exactly what you said. Saturday evening was an emergency situation.  Any time someone's cognition changes as drastically and as quickly as mom's did, it's important to get to the ER.  Unfortunately, as the doctor also noted, people often refuse to go and that can cause problems.  If it happens again, I will call 911 and see if we can cajole her into going.

Rebel13 - My sibs and I have discussed guardianship.  We are hoping to get by with durable POA, medical POA, and the fact that my sister is joint on mom's bank accounts.  As you know, guardianship is a long and somewhat expensive process.  For now, mom is still listening to one brother, so maybe he can convince her to get more care, and we won't have to go the guardianship route.

So what a week it's been - and it's only Tuesday!  In some ways, I feel very calm about all this.  For years, I've been second-guessing myself.  What could I do to make mom happy?  What should I be doing for her?  How can I positively impact her situation?  But the truth is, Mom has dementia and it is progressing quite rapidly.  There is absolutely nothing I can do.  Of course, I can manage her care and make sure she is safe.  But she is going to hate me and she is going to be absolutely miserable, and there is nothing I can do to change that.

I'll have more info later this month, after mom sees the neurologist.  But I'm expecting him to confirm the dementia diagnosis.  And I also think mom's decline is going to be fairly rapid.  I do feel sorry for her, as she is scared and angry and lost at the moment.  And she thinks she has an apartment full of cats and birds.  But my ability to impact any of this is pretty minimal.

[j.banquo]

I'm sorry for what you've been going through!

I don't think you're a bad daughter, I think you're dedicated to your mom, and have spent countless years trying to help and understand her. You're right there's not much more you can do for her.

I agree she can't live independently. I've had experience with psychosis (thankfully SSRI induced, not organic), and wow could I not care for myself during that time, I had no thought for cleaning, hygiene, feeding myself, paying bills, and wasn't dangerous, but was making pretty weird decisions that could've harmed me. And since she has dementia, it's not a transient thing.

Good luck, and I hope things start to be less stressful ASAP.

[Rebel13]

Sneezy, I'm glad things are momentarily stable and you have confirmation of what you suspected was going on. That must feel good. It sounds like you and your siblings are on it, in terms of getting things taken care of legally etc. Good for you for planning ahead that much! And best of luck with what's coming up. I really love how you acknowledge that she's going to be unhappy and there's not really any way to fix that. I hope that knowledge gives you some peace and relieves some stress during this whole ordeal.

[Psuedonym]

Hey Sneezy! I logged on just to see how you were doing and saw your post. First off,

 

Some thoughts:

I wish she would just pass away.  Isn't that a horrible thing for a daughter to wish about her mother?

Of course it's not. It's a rational thing to wish in such a situation. What's horrible is having a mean, nasty, hateful, terrible person who sucks the joy out of me and fills the space with anxiety and hate for a mother. Someone who is always the victims and expects you to be the parent. You were not and are not her parent, and of course you can barely stand to be around her. Many, many of us have been there and had the same thoughts. There was a great article that I can't find the link to at the moment in which a PD expert said something to the effect of 'it's almost a unique feature of patients with BPD mothers who wish their parent was dead and at the same time feel incredibly guilty about it'.

As to the current situation, I agree that all the advice you've gotten so far is great. If she ends up in the emergency room, ask to speak to the case worker there and explain the situation. As the great and wise Woman Interrupted once told us, the hospital cannot legally release her to an unsafe environment, and they can't make you take her. They have to keep her until you can find a suitable environment for her. Also, I'm not sure what state you are in, but we had an incredible independent senior living advisor help us with both Negatron and my DH's mother. They don't cost you anything and are highly skilled at negotiating these kind of situations. DM if you want more specific details.

Finally, think of the dementia as a sort of get of guilt jail free card. Your M has been angling for years that she would be happy if only she could come live with you and torment you relentlessly every waking moment of the day. The ol' hospital bed in the living room dream as WI would put it. You literally cannot care for a person with dementia. My BFs M was one of the niceset, kindest people in the world, and she planned to move her to her home when she developed Alzheimers. Absolutely undoable. Someone with dementia requires around the clock care that you are not equipped to provide, regardless of the PD.

Let us know what else we can do for you, Sneezy! As your future self, I want you to know that you will get through this!

[Sneezy]

Thanks Psuedonym - I sent you a dm to discuss senior living advisors.  Let me know if you don't get it, as I tried to send a dm to someone once before and it didn't work (user error on my part, probably).

I so appreciate your advice.  And I'd forgotten about WI's "hospital bed in the living room" dream.  Of course - that is exactly what my mom wants.  A hospital bed in the middle of my house, where all her friends and family can surround her at all hours and coddle her and tell her how no one suffers like she suffers.

When I took mom to the doctor, she knew that the main purpose of the visit was to rule out a UTI.  So of course she couldn't provide a sample at the doctor's office and had to be sent home with a cup.  I think she enjoyed making me make a separate trip back to her apartment to pick up a cup of pee and take it to the doctor's office.  Anyway, that is done and we are awaiting results.  Today's hallucinations don't seem to be bothering her as much.  She is down to one cat, and has put food and water out for him.  She wants me to pick him up and take him to get neutered, but I told her we didn't have to do that right away.  I'm no longer arguing with her - there's just no point.  My sister, who typically talks to mom on the phone every day (God bless her), is taking a break from the phone calls for a week.  So mom is calling me more often.  Her constant phone calls are a pain in the neck, but I've gotten to the point where I answer if I'm in a good mental space, and ignore them otherwise.  It doesn't seem to matter much what I do.

You know, I still wonder in the back of my mind if there really is a cat.  About a year ago, mom called, insisting that raccoons had gotten into her apartment complex.  I didn't believe her at all.  But later that day, I went over and sure enough.  The lady at the desk told me they had a raccoon issue, and I could see some of the damage right down the hall from mom's apartment.  So I'm holding out a 0.1 percent chance there really are cats. What an interesting time this is.

[TimetoHeal]

Sneezy,

I am so sorry you are going through this.  I can almost feel the panic in your post, or maybe it's my own panic I am feeling, since I think I am just one or two steps behind you with my mom.

Do you have power of attorney for her?  If so, I would go ahead and be finding her a place with more assistance whether she agrees to it or not.  If not, then there's really nothing you can do.  It's her mess to stew in. 

I am so sorry I don't have better advice, but I am sending you virtual hugs and support.   

[Sneezy]

I can almost feel the panic in your post, or maybe it's my own panic I am feeling, since I think I am just one or two steps behind you with my mom.

Sometimes I feel the panic set in, but we have been through something similar with my MIL, and so I do feel like I'm as prepared as I can be.  As DH reminds me, a lot of families have it a lot worse, and I try to remember that.

I do have both medical and durable POA for my mom.  The thing is that she has good days and bad days.  So when she has a good day, there's nothing stopping her from getting a taxi to a lawyer's office and executing paperwork to revoke my POAs.  I also can't make her move anywhere, she really has to agree (or at least go without putting up too much of a fuss).

I have learned a lot by watching and helping DH with his mom.  Even someone with documented dementia, living in memory care, can not be forced to do anything.  My MIL can refuse to shower, refuse to eat, refuse to take meds, etc.  Now that she has been in memory care for a while, and is used to it, she is actually pretty sweet and cooperative.  But initially, it was rough, as she refused to cooperate almost daily.

As far as my mom, I could sign a rent agreement for her for assisted living.  But when the movers show up, she can refuse to let them move her things.  She can physically refuse to move.  Even if I had guardianship of the person for her, it would be difficult if she refused to move.  I can't imagine physically forcing her to go anywhere if she sat down and refused to go.  And even with guardianship, you can't make someone take medication.  It takes a special order from a judge, and you almost always have to show that the person is a danger to themselves or others, before a court will force medication on someone.

And these kind of restrictive rules are actually good for most of us, most of the time.  We don't want to go back to the days when "problem" people were involuntarily committed and medicated.  But it sure does make things difficult for us when our parents are starting down the road to needing more help.

Now it will be a different story if her independent senior living facility kicks her out.  They have the right, in the lease, to give her 30 days notice to move out if they think she is unsafe living there.  And the decision is solely theirs, there is no appealing it.  If that happens, mom will be forced to move and we will see how that goes.  But I'm hoping it doesn't reach a crisis point before we can make some changes.

[TimetoHeal]

Oh, wow, I actually did not know all this.    I am so glad you have the experience already with your MIL so you have all of this knowledge ahead of time.  I am really kind of in shock.  What is the purpose of POA, then?  If the independent living facility kicks her out, are you required to take her?  Oh my god, my panic just went up a few notches, actually.  LOL.  I already have family members and others asking me, "Why don't you make your mom do xyz?".  Like really, do you know my mom?  And she, so far, does not have any diagnosis that would make her deemed incompetent.  She is just old and miserable.  Sigh, well, with this being the state of things, I guess what I said before that it really is their own mess to stew in if they choose to is even more true?   

[Sneezy]

What is the purpose of POA, then?

I am still learning, but if I understand correctly, a POA lets me step into the shoes of my mom and act as if I were her. So, if she agrees that she needs more care, I can go out and find her a place and sign a lease for her and contract with movers and even write a check to pay them from her bank account. The problem right now is that my mom is kind of in this in-between space where she is often cognizant enough to make her own decisions. So I can make decisions for her, as her agent. But she can also make decisions for herself. One decision she could make is to revoke the POA she gave to me and give it to someone else. This is actually a very vulnerable time for my mom. She is cognizant enough to make some decisions, but also demented enough to potentially make some very bad decisions.

Here is a good example of where we are. When I took mom to the doctor on Monday, I asked for access to her patient portal, so I can see test results, visit notes, etc. Mom stated that she did not want me to access her patient information, and so the person at the desk said she was sorry, but I couldn't have access as mom said no. I went back on Tuesday, with a copy of my POA and medical POA, but without mom, and was given access. Technically, as mom had said she didn't want me to have access just 24 hours ago, I don't know if the doctor's office should have given me access. But I had the right signed POAs, and they know mom is declining and needs help. It is just such a grey area at the moment.

Everything is just very up in the air right now.

[TimetoHeal]

Thank you so much for your reply, Sneezy.  I can see it is a very sensitive situation.  Scary for her and scary for you as well.  It really is a grey area, isn't it?  Well, it seems to me that you are handling it beautifully.  More hugs as you continue to navigate this new territory.   

[Fiasco]

I'm making my first flight to see undiagnosed dementia BPDm this summer in years. I never wanted to see her again but her very sweeet friend who does so much for her has, at my request, put together a list of tasks she would like done at the house and I've set aside a couple days to come check off the list.

It's funny, the things that alarm others the most about the way my mom lives are the environment and behaviors she's had her whole life. She's always been dirty, disorganized and unable to deal with even throwing away junk mail. But I know there are hallucinations and the creeping inability to understand and especially to remember anything from one minute to the next. I'll put up with seeing my mom in person so I can help out her friend, and then I'll go home and pray she lays down for the eternal nap sooner rather than later.

[Sneezy]

Fiasco - I hope your trip goes well. You are a very kind person to do this for your mom. I recently read something that said when you add dementia on top of a pre-existing PD, it's like adding gasoline to a fire. Good luck and be sure to take care of yourself as you take on the mom-stuff for a few days.

TimeToHeal - I was thinking more about your question after I had to call 911 last evening. Mom was hallucinating again and it was bad. Her doctor had told me she absolutely must go to the ER when this happens. I have POA and medical POA, and the EMTs who responded agreed that mom was definitely hallucinating. But because she could tell them what day, month, and year it was, she was allowed to make her own decisions, and could refuse to go to the hospital. Honestly, having POA at this point feels utterly useless. I suppose it will be necessary once mom clearly can't/won't make decisions. But as of right now, I can't make mom do anything, even if it's in her best interest. It's so frustrating.