Having a mentally ill older parent is REALLY hard (JAWM)

[Shoeless]

My mother has some undiagnosed, untreated mental health issues.  Broadly, she has severe anxiety and agoraphobia.  None of this has ever been officially diagnosed because she won't see a doctor. She once told me that a school therapist back in the 1960s told her she had bipolar disorder (???), but that doesn't make any sense. I highly doubt she's bipolar.  I think she's got some combo of anxiety, agoraphobia, and neurodiversity, but none of it has ever been diagnosed, treated, no therapy, etc. 

She will not (can not), leave the house without my stepfather and their dog.  She's cut herself off from all of her relatives; she won't return calls from either of her brothers, won't acknowledge their letters or gifts (but will accept and cash the checks they send).  She cut her cousins, nieces, and nephews off decades ago.  My extended family often asks me why she won't talk to anyone, and I have no idea.  Like, she's got some mental health issues, guys.  She barely talks to me, too, so I do not have any great insight into this.  I've tried talking to my mother and stepfather about this, to say "Hey, there's something really concerning here. What's up?", and received extremely hostile pushback from them.  My mother kept screaming into the phone that she had no idea what I was talking about, that *she* was perfectly normal and that *I* was the one with mental health issues.  Then my stepfather got on the phone, continued the screaming, and added in some swearing, where he called me all sorts of vulgar names.  All because I said that estranging herself from a family that very much wants to know her is *not* a typical course of action, and we'd all like to know if we did something that caused this.  I offered to go to family therapy with her if she thought that would help, and was called "the C word" by my stepfather in response. So...yeah.  

My mom is now 70. She has become severely obese and apparently was in the hospital recently for cellulitis. My stepfather is not in great health. He's a type-2 diabetic, he only has 1 kidney and there's some reduced function there, plus he had some kind of blood cell disorder that's a pre-cursor to leukemia, but now he claims he's cured.  Like, details on their health issues are always vague and have an element of "That doesn't sound right". I never know if I'm being completely lied to or if they've misunderstood what the doctors have said.  None of it ever makes sense, but if I press them on it, I get called vulgar names and screamed at, so I don't press. My mom tends to make up mystery illnesses to get out of any kind of social pressures.  Mom claimed she could not visit either of her parents in the hospital when they were dying because *mom* was too sick from allergies and a sinus infection.  She wasn't sick. She just didn't want to go. She does this all the time.

This whole dynamic is currently weighing heavily on me because of Covid. I have very, very gently suggested they both get vaccinated against Covid, especially since they live in Florida. The first time I suggested it, I got told a weird lie about how my mother is highly allergic to mosquitoes, and is thus concerned about vaccine side effects (???). I gently responded that side effects are concerning, but the vaccines have zero to do with bug bites.  Silence in response. I reached out again last week, and said that in light of the Delta variant, I really hope they reconsider getting vaccinated. This time I got a weird response saying they can't get vaccinated because stepfather's doctor does not recommend vaccination against any viral illness due to only having one kidney. This...does not make sense, and doesn't prevent *her* from being vaccinated.  But it doesn't matter, because if I push anymore on this, I'm just going to get berated. In this email about the vaccines, she did an "Oh by the way..." that she'd been hospitalized with cellulitis and had 2 weeks of iv antibiotic therapy a few months ago. She didn't tell me and my idiot stepfather didn't bother to call, either. I'm sure if I pressed the issue, he'd find a way to make it my fault that he didn't call.

I am SO TIRED of this relationship dynamic. There's no way for me to do the right thing, because they are hostile to any attempt to care or help. The best I get is ignored, the worst I get is getting called vulgar names.  They've flat out said that they don't owe me or anyone else an explanation for their actions.  Which...yes, but no.  Adults don't *have* to explain themselves if they don't want to, but there is some level of accountability to the people you have a relationship with!  If you do weird things, they're probably going to ask about it because they care! 

There is a day coming soon when neither of them will be able to care for themselves properly, and I CANNOT move them into my home. I can't subject my husband to them and their dysfunction. Our marriage would not survive.  I don't want to subject *myself* to it. I have no idea what their estate planning looks like, or even if they have any planning.  I'm really afraid that one or both of them will get long covid, and they'll expect me to take care of them. 

What happens to elderly people like this? I feel like they are heading toward a terrible, tragic end.  They've been so hostile and verbally abusive in their good-health years that the idea of taking on care for them in their difficult-health years sends my anxiety through the roof.  ☹️

  

[mommyoffive]

I am so sorry.  Sending lots of hugs.

[Faith-manor]

I am so sorry. I think what happens to people like this is, sadly, they die in their homes alone, or sometimes social services gets involved if they make too many 911 calls due to not being able to take care of themselves.

[happi duck]

Many (hugs)

[Kassia]

I am very sorry.  That is SO hard. 

[fraidycat]

I'm sorry, that is so hard. I don't know what will happen if/when they can't care for themselves, but I do know that you are not obligated to take them into your home.

[Starr]

I'm so sorry. Some heath issue will come up and they will go to the hospital and then rehab if there isn't anyone to care for them. They use whatever money they have for assisted living and then medicaid. Don't ever be the one to pick them up from the hospital if you can't care for them.

[TexasProud]

Huge hugs. I am very sorry.

[Spryte]

I am so, so sorry.  It sounds like a big, painful mess.

They will work through what they need to do, you do not have to care for them in your home. 

My mom is bipolar, among other things. She wasn’t diagnosed till she was 76.  I think it was 76.  Getting medicated has really helped.  But there was no stepfather exacerbating things, and it was only after being hospitalized twice (for mental health issues). The only reason I can have her with me now, and take care of her, is medication.  It could easily have gone the other way.  

Sending hugs.  And strength.  Someday maybe you can join me in writing a book about being raised by undiagnosed bipolar (or otherwise) mothers.  I bet we have some stories to share.

[Katy]

They either die at home or they have some injury or illness that gets them hospitalized.  When it is no longer safe for them to return home they are sent to a nursing home, where they'll likely die within 3 years.

[popmom]

Hugs from me, too. 

[Scarlett]

@MissLemon I am so sorry. That sounds incredibly stressful. 😱 

[Shoeless]

22 minutes ago, Scarlett said:

@MissLemon I am so sorry. That sounds incredibly stressful. 😱 

The whole situation is so incredibly sad. 90% of our interactions are negative and stressful. The other 10% is just positive enough to make me think there's hope for something normal, but then no. 

[Shoeless]

2 hours ago, Starr said:

I'm so sorry. Some heath issue will come up and they will go to the hospital and then rehab if there isn't anyone to care for them. They use whatever money they have for assisted living and then medicaid. Don't ever be the one to pick them up from the hospital if you can't care for them.

They live far from me, so there's no way this will happen.  But thank you for saying it, because it's a good reminder. I expect that one day I'll get a call from a social worker trying to get me involved in their care, and I need to just keep saying "no" when that happens. 

[SKL]

nm

Edited August 4, 2021 by SKL

[Shoeless]

33 minutes ago, SKL said:

I can't really talk to my mom about her health either.  It's even hard for my dad to do so, and he lives with her.  (FWIW she also has agoraphobia.)

Leave it up to their doctors to advise them on the vaccine and everything else.  Not only is it apparently futile for you to make suggestions, it is also really not your role.  They have made it pretty clear they don't want it, and they are adults with free agency.

So, can you try to adopt a different way of showing caring in your conversations?  Would it work better if, after chatting on topics your folks are comfortable with, you could just add, "is there anything you would like me to do for you?"  And just leave it open, and accept it if they say "no."

My folks moved away from both of their moms, in part because they needed some physical distance.  Their moms never needed to move in with any of their children.  In your case, it sounds like your folks don't live near you, and that's probably a good thing.  As others have said, you are under no obligation to get any closer to them, now or in the future.

This is a JAWM thread.  I wasn't looking for advice or opinions on why I'm overstepping my role in suggesting people do things that keep them from dying.  And if their expectation is that I'm supposed to clean up the mess they make, (which they have alluded to in the past), then I disagree that it's not my "role" to say something to keep that mess from happening.     

The relationship with these people is a HECK of a lot more complicated than you know.   

[Rosie_0801]

There's nothing you can do with impossible people. ❤️ 

[Shoeless]

1 hour ago, Rosie_0801 said:

There's nothing you can do with impossible people. ❤️ 

Thank you, @Rosie_0801. It's been a rough few days. 

[Not_a_Number]

I don’t think you have any obligations here. I know that doesn’t make it easy, though.

[PeterPan]

11 hours ago, MissLemon said:

There's no way for me to do the right thing, because they are hostile to any attempt to care or help.

Fwiw, I think you could tease those apart. I'm not sure "doing the right thing" = making it better. You care so much you want to make it better, but not being able to make it better doesn't mean you aren't doing the right thing. I find that with my dad, who also has some impossible challenges. 

Doing the right thing is being attentive, available, and ready to follow anything required by law. But as you're finding, making something better is dependent on their willingness to accept help. 

Do they at least have wills? Would they at least do that? It seems like that's the next layer I'm seeing (with people in my own circles). The extreme anxiety and mental health results in them holing up and not being willing to do a will. So then when they are gone, the family is STILL cleaning up their messes. 

[Kathryn]

Your post brings to mind my MIL’s recent decline and demise. She had a host of physical ailments that we only found out about going through her papers after her death. She was hostile and non compliant with treatment according to all the doctor notes I’ve read, which makes sense given her personality. She took horrible care of herself, stayed in her home, smoked, ate horribly, and hoarded animals. She refused the COVID vaccine. She suffered a series of strokes in late June. While she was in the hospital for almost a week, my husband was able to visit her because he was vaccinated. But, once they moved her to a rehab facility, there was a two-week waiting period to be able to visit her because of her refusal to vaccinate. She didn’t make it the two weeks. After nine days, an ambulance took her to the hospital where she died before my husband was able to get to her (we live two hours away). And honestly, he admits that he’s glad she went like that, because her worst nightmare was living in an awful nursing home, but she had no savings at all (surviving solely off social security and bank account down to pennies at month’s end), nobody else could fund anything, and absolutely nobody would take her in with the smoking, animals, and attitude. It was an awful situation all around, and while we obviously hoped things would have changed dramatically, realistically this was the best outcome.

And as for a will, in our case, we just walked away from the whole thing. My husband had already gotten the few sentimental items from her house and the papers that looked important to deal with her care and finances while she was unable to do so. Her finances were a complete mess (She literally died with $350 in the bank only because her expenses were lessened while she was in the hospital) and because of her smoking and animal hoarding, her house is worth about a quarter of the mortgage that was just restructured the month before, folding in a bunch of late fees and penalties. And yesterday I was going through her papers and found that she hadn’t filed income taxes since 2000 and owed the federal government $72,000. 
 

The whole thing is just a depressing mess and I’m so sorry for anyone having to deal with parents with their heads stuck in the sand.

 

ETA after reading other replies: the rehab facility got the ball rolling on applying for Medicaid using info we provided. My husband had medical POA and the admission people at rehab tried to get him to sign her paperwork (all on phone and online) as “responsible party” and say it didn’t put him on the hook for money. Legally, it’s not supposed to, but the 48-page document had a number of illegal items in it and I read horror stories about those places trying to go after people who signed admission paperwork. Whatever you do, don’t sign anything in your name!

Edited August 4, 2021 by Kathryn

[DawnM]

This was my mother, although there is a lot and I don't feel like putting it on a forum and having to answer a lot of questions, so let's just say that it was very rough for all of my life, but it got really bad right before she died.

Feel free to PM me and I am willing to share details.   

And YES, 100%, mentally ill parents are beyond difficult.

[Shoeless]

6 hours ago, PeterPan said:

Fwiw, I think you could tease those apart. I'm not sure "doing the right thing" = making it better. You care so much you want to make it better, but not being able to make it better doesn't mean you aren't doing the right thing. I find that with my dad, who also has some impossible challenges. 

Doing the right thing is being attentive, available, and ready to follow anything required by law. But as you're finding, making something better is dependent on their willingness to accept help. 

Do they at least have wills? Would they at least do that? It seems like that's the next layer I'm seeing (with people in my own circles). The extreme anxiety and mental health results in them holing up and not being willing to do a will. So then when they are gone, the family is STILL cleaning up their messes. 

I'm not sure. They are so...prickly...about these sorts of inquiries.  The response could be anywhere from ignoring me to getting angry to a snide comment that I'm only after their money to outright lying that they have a will when they don't.  They've always been secretive about their finances. They could be broke or sitting on millions. Either is entirely possible. 

I know my mother has done whatever paperwork is necessary to get social security and medicaid going for herself. She bragged about it and tried to lord it over me, like "Well, *I* get social security and *you* don't! Aren't I so clever!" 🙄 Congrats. Everyone gets social security if they live long enough.  It's not a special prize for the chosen few. 🙄

[Scarlett]

10 minutes ago, MissLemon said:

I'm not sure. They are so...prickly...about these sorts of inquiries.  The response could be anywhere from ignoring me to getting angry to a snide comment that I'm only after their money to outright lying that they have a will when they don't.  They've always been secretive about their finances. They could be broke or sitting on millions. Either is entirely possible. 

I know my mother has done whatever paperwork is necessary to get social security and medicaid going for herself. She bragged about it and tried to lord it over me, like "Well, *I* get social security and *you* don't! Aren't I so clever!" 🙄 Congrats. Everyone gets social security if they live long enough.  It's not a special prize for the chosen few. 🙄

Your post was sad but the bolded made me laugh. 

My parents....while not mentally ill and not unkind....have been very weird about a will the last few years.  I don't think they are broke or rich....and honestly they don't really 'hide' things from me...but the refusal to do a will or discuss it is just mind blowing.

[saraha]

My mother, who once railed against me because my third grade teacher was so concerned for us that she filled out the free lunch forms for us and all my mom had to do was sign it basically is now the queen of taking advantage of every program she can now that she has run out of people to live off of. She will fill out whatever paperwork she can and hound people for “free money” now, but when we were kids and hungry, “we don’t take charity”.  she drives me batty every three month’s because whatever Medicare program she is on let’s her spend $70 a quarter shopping at Walmart from a list they provide and she wants to do it the very day the money hits her account. She enjoys the thrill of “stealing” from Walmart because she walks out of there without paying anything.🙄 She lives the feeling of getting something over on someone, even if it is in her imagination.

She has never discussed with us anything except to say that when she dies we are supposed to look for her important papers box under her bed, and that she wants her body donated to science. I don’t even know how you even begin to do that

Edited August 4, 2021 by saraha

[MercyA]

, MissLemon.

[saraha]

@MissLemon I am so sorry that you have had to go through this for so long. No one she have such ugly things said to them, you definitely don’t deserve that.

[Shoeless]

12 minutes ago, saraha said:

My mother, who once railed against me because my third grade teacher was so concerned for us that she filled out the free lunch forms for us and all my mom had to do was sign it basically is now the queen of taking advantage of every program she can now that she has run out of people to live off of. She will fill out whatever paperwork she can and hound people for “free money” now, but when we were kids and hungry, “we don’t take charity”.  she drives me batty every three month’s because whatever Medicare program she is on let’s her spend $70 a quarter shopping at Walmart from a list they provide and she wants to do it the very day the money hits her account. She enjoys the thrill of “stealing” from Walmart because she walks out of there without paying anything.🙄 She lives the feeling of getting something over on someone, even if it is in her imagination.

She has never discussed with us anything except to say that when she dies we are supposed to look for her important papers box under her bed, and that she wants her body donated to science. I don’t even know how you even begin to do that

At least she's got paperwork in a box?  Hopefully there is useful paperwork in there, and not just a bunch of nonsense. 

My mom is so...*sigh*. Just so bananas. She's competitive in weird ways. Like, when I was 14, a school nurse picked up that I had a heart murmur. Off I went to the cardiologist, who said it was pretty mild and not a big deal. I'd probably been born with it, it tends to run in families and I'd likely outgrow it once I finished growing. The only thing I needed to do was take antibiotics before surgery and dental visits (I don't think they recommend this anymore, and I did eventually outgrow the heart murmur. It's undetectable now). 

My mom heard all this and decided that she also must have a heart murmur, and started insisting the dentist prescribe her antibiotics before dental cleanings. She looked smug and happy every time she requested them.  She *never* saw a cardiologist to get a diagnosis. Never even saw a GP to listen for a heart murmur. She saw that I was getting "special treatment" and wanted it, too. 

She also decided to start taking the diuretics my step-father was prescribed for high blood pressure.  No, she didn't have a diagnosis of hbp.  She just wanted to take them because the pills made him "special", and she wanted to be special, too. She was very pleased with herself for deciding to put herself on his medication, and for whatever reason, stepfather thought this was a good idea, too. I have no idea how he explained this to his doctor. 

It was years ago, but this is how she thinks, and stepfather just goes along with it. 

[saraha]

1 hour ago, MissLemon said:

At least she's got paperwork in a box?  Hopefully there is useful paperwork in there, and not just a bunch of nonsense. 

My mom is so...*sigh*. Just so bananas. She's competitive in weird ways. Like, when I was 14, a school nurse picked up that I had a heart murmur. Off I went to the cardiologist, who said it was pretty mild and not a big deal. I'd probably been born with it, it tends to run in families and I'd likely outgrow it once I finished growing. The only thing I needed to do was take antibiotics before surgery and dental visits (I don't think they recommend this anymore, and I did eventually outgrow the heart murmur. It's undetectable now). 

My mom heard all this and decided that she also must have a heart murmur, and started insisting the dentist prescribe her antibiotics before dental cleanings. She looked smug and happy every time she requested them.  She *never* saw a cardiologist to get a diagnosis. Never even saw a GP to listen for a heart murmur. She saw that I was getting "special treatment" and wanted it, too. 

She also decided to start taking the diuretics my step-father was prescribed for high blood pressure.  No, she didn't have a diagnosis of hbp.  She just wanted to take them because the pills made him "special", and she wanted to be special, too. She was very pleased with herself for deciding to put herself on his medication, and for whatever reason, stepfather thought this was a good idea, too. I have no idea how he explained this to his doctor. 

It was years ago, but this is how she thinks, and stepfather just goes along with it. 

She and my mom have a lot in common. When my sister ended up in the emergency room for blood clots last year, only one person was allowed in with her. She called me from the e r to tell me come get my mom because she was telling the nurses she needed them to bring her a tray of food because her blood sugar was low and she was going to pass out. While they were working on my sister in the e r . When they gave her an orange juice and told her to knock it off, the fireworks were something else. The competition thing is just so ugh. She is only 65 🙄

I know you have your reasons for still being involved and I am so sorry that you were dealt this hand. 

Edited August 4, 2021 by saraha

[Shoeless]

15 minutes ago, saraha said:

She and my mom have a lot in common. When my sister ended up in the emergency room for blood clots last year, only one person was allowed in with her. She called me from the e r to tell me come get my mom because she was telling the nurses she needed them to bring her a tray of food because her blood sugar was low and she was going to pass out. While they were working on my sister in the e r . When they gave her an orange juice and told her to knock it off, the fireworks were something else. The competition thing is just so ugh. She is only 65 🙄

I know you have your reasons for still being involved and I am so sorry that you were dealt this hand. 

I suppose it's because I know what it's like to be vulnerable and scared, and not have someone competent around to help and advise. 

The irony of that statement isn't lost on me. 😕 

[Shoeless]

The fact that she'll fake illnesses when it suits her makes it really hard to sort out what is truth and what is a lie. She's inconsistent and secretive. She runs head first into fake illnesses, but blows off real issues and sneers at me for expressing concern.  So maybe my stepfather has some sort of condition that prevents him being vaccinated 🙄or maybe not. The fact that he was born with only one kidney is exciting and makes him "special", and thus she is also special by association, but the rare blood disorder he has is no biggie and they don't want to talk about it. 

Up until December, he was still working as a handy man, climbing up on rooftops to fix air conditioners.  He kept passing out and fell off a roof.  When I expressed grave concern about stepfather continuing to work, she said "It's fine. It wasn't a high roof and he said he'll sit down if he starts to feel dizzy". Like, no concern at all from her that her husband fell off a roof. 

I've said, very plainly "I'd like to know more about what's going on so I can find the best way of supporting you both", and got no response. 

The whole thing is so crazy. 

 

[Shoeless]

Also, thank you all for listening.  I know there likely isn't anything I can do about this, but sometimes I have to vent it somewhere so my poor husband doesn't have to hear it again.

Neither of them are going to suddenly become sane and make good decisions.  Their ending is likely to be unnecessarily painful, but all I can realistically do is avoid becoming collateral damage. 

[prairiewindmomma]

Hugs! Sincerely. It completely sucks. 

[Kathryn]

3 hours ago, MissLemon said:

The fact that she'll fake illnesses when it suits her makes it really hard to sort out what is truth and what is a lie. She's inconsistent and secretive. She runs head first into fake illnesses, but blows off real issues and sneers at me for expressing concern.  So maybe my stepfather has some sort of condition that prevents him being vaccinated 🙄or maybe not. The fact that he was born with only one kidney is exciting and makes him "special", and thus she is also special by association, but the rare blood disorder he has is no biggie and they don't want to talk about it. 

Up until December, he was still working as a handy man, climbing up on rooftops to fix air conditioners.  He kept passing out and fell off a roof.  When I expressed grave concern about stepfather continuing to work, she said "It's fine. It wasn't a high roof and he said he'll sit down if he starts to feel dizzy". Like, no concern at all from her that her husband fell off a roof. 

I've said, very plainly "I'd like to know more about what's going on so I can find the best way of supporting you both", and got no response. 

The whole thing is so crazy. 

 

OMG, my MIL spent *years* going to doctor after doctor trying to get diagnosed with something to get disability. She first wanted to get it for being “sensitive” to lotions and perfumes. Doctors notes showed that she didn’t have any reaction to in-office tests, and after over a year of trying that, she went to dozens of different ones trying to collect diagnoses. She even got a couple of surgeries, including elective gallbladder removal. Yet, once she was receiving disability finally and then hit full retirement age, she just stopped caring? The day her medical records show that she was told she likely had colon cancer, she wrote in her journal that she was given a new diagnosis, but she “disclaims” it. She never mentioned it to anyone. The week before she died, she was supposed to have a lung biopsy, because scans showed a mass in her lung and she had trouble breathing. She told everyone it was because of persistent bronchitis. 

[Shoeless]

35 minutes ago, Kathryn said:

OMG, my MIL spent *years* going to doctor after doctor trying to get diagnosed with something to get disability. She first wanted to get it for being “sensitive” to lotions and perfumes. Doctors notes showed that she didn’t have any reaction to in-office tests, and after over a year of trying that, she went to dozens of different ones trying to collect diagnoses. She even got a couple of surgeries, including elective gallbladder removal. Yet, once she was receiving disability finally and then hit full retirement age, she just stopped caring? The day her medical records show that she was told she likely had colon cancer, she wrote in her journal that she was given a new diagnosis, but she “disclaims” it. She never mentioned it to anyone. The week before she died, she was supposed to have a lung biopsy, because scans showed a mass in her lung and she had trouble breathing. She told everyone it was because of persistent bronchitis. 

It's so weird, isn't it! I wish I understood the psychology behind that type of thinking!