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24 March 2016 @ 05:12 pm
The Long-Awaited Mom Update.  
So, I owe you all a Mom update. This is long, I have to go back to, uh, January, I guess it was. There was a Wednesday when my sister went to visit Mom at rehab and her breathing didn’t sound very good. Sis wanted to know what the doctor said. “Oh, I haven’t seen a doctor,” Mom tells her. Then on Sunday, Sis takes Mom to visit a sick friend. After they leave, Sis says, “So, shall we go to the ER?” Mom is taken aback, why would they? Sis is like, “If I sounded like you, I’d go to the ER.” Mom pooh-poohs her.


Then on Tuesday, the nurse from rehab calls to say that Mom can’t breath without tons of oxygen and they want her to go to the hospital, but Mom is refusing. There’s definite swelling and they suspect congestive heart failure. The next day rehab calls Sis to tell her that if Mom won’t go to the hospital - as she is still refusing - that they need her to sign a DNR and a waiver so, basically, we can’t sue them when she dies, because, as they say, she will die. So Little Brother is like, “Mom, listen, it’s not ‘go to the hospital, this is terrible, rush you away,’ it’s that there is a pill for this, but your levels have to be monitored constantly and they can’t do it at rehab. There’s so much bloodwork and they have to constantly check your organs and stuff, so just go to the hospital so you can take this simple pill for a few days.” He made it sound like it was not a big deal, so she was not so overwhelmed. By the time Sis got out of work, Mom was at the hospital. (She wanted to go to the cardiac hospital, but the ambulance refused to drive her that far, so she went to the local hospital, but no one told us the ambulance changed their mind, so for about 45 minutes there, we lost our mother!)

Anyways, she was bad. On a respirator, unresponsive, bad. I saw her Thursday and when I got home, I called Canadian Brother and told him to come. He did, drove 14 straight hours on Friday to get here. We weren’t sure she’d still be alive when he got here, but she was. She is, still, don’t worry. By the time he went to drive home on Monday, she was off the respirator, aware of her surroundings, better. But we really thought that was the last thing her body could handle.

Fast forward to now and her congestive heart failure is relatively under control, the pneumonia is gone and she is released from the rehab. Not because she is well enough to be released though, just because her insurance won’t cover rehab anymore. She is still weak, using a walker, can’t use her right arm at all because she refused proper PT after her shoulder surgery, BP is way low all the time. She is half not-well because her body is kicking her ass and half not-well because she won’t do the work.

When she goes to get released, we had told our uncle who was dropping her at my aunt’s where she will be staying for a month or so, “Do not leave her until you have witnessed her putting the Life Alert bracelet on.” Okay, he says, but when they get to Aunt’s house, they can’t find the life alert bracelet, so instead off bringing her to my house or anything, he leaves her there alone with no life alert. 1 ½ hours into her release from rehab, she falls off the toilet. Apparently it was too low and she couldn’t stand up off it by herself, but since she couldn’t just push her life alert button, she instead slid to the floor and then crawled back to the living room and pulled herself up into her chair. Then she had to go to the bathroom later, but refused to call anyone for help and yelled at me when I tried to find someone to help her. No, no, she’ll just hold it all afternoon.

So, yeah, she’s out of rehab now, even though she shouldn’t be. She won’t do her exercises or eat and she lies to all her doctors about that stuff. She keeps talking about when she goes home, which I never see happening, but she can’t live on a cot in my aunt’s living room forever, so…idk. But she refuses to wear her life alert half the time or ask for help for major things (only for little things that she freaks out about like how she need stamps!) and basically, it’s time for me to take my own life back.

So I call her once a week on Fridays now, to get the list of errands she needs Sis to do for her that weekend and I don’t answer the phone when she calls, I wait and see what she says on the message. 9/10 she just says, “Are you there? Can you pick up?” and doesn’t say what she wants, so she doesn’t get a call back. I’ve been through this with her enough times that she knows she has to say what she wants - years of drilling that into her and if she can’t get it, well, that’s not my problem. It’s sad to kind of reach this state with her, but she won’t do for herself and you can’t help someone that doesn’t want help and the day we reached the 6 month anniversary mark of her broken shoulder/heart attacks/surgery, I basically decided it was time to wash my hands, as best I could anyways.

What’s next for her? She can’t stay at my aunt’s forever, so idk. Maybe she really will go home. But one thing is for sure, she can’t have Winston back. He’s my puppy now!
 
 
 
Kate: Hiding Catceitfianna on March 24th, 2016 09:48 pm (UTC)
*hugs* I'm glad you found a balance that works for you as her health needs to be her concern. Its disturbing how she's not getting it but it sounds like that's not something you or anyone else can change for her. I mean if none of this has given her a wake up call, I don't know what will.
dodger_sister: apocalypsedodger_sister on March 26th, 2016 08:08 pm (UTC)
I mean if none of this has given her a wake up call, I don't know what will.

Exactly. And if she won't put any effort into herself, then why should I? I actually feel so freed now that I've set down these boundaries for myself. My counselor was working on them with me, but I wasn't ready to go this extreme, until the day she fell of the toilet and wasn't wearing her life alert and then I decided, right then, that I was ready, that extreme was what was needed. I mean, if she calls and says into the machine, "Hey, just wanted to chat," I will call her back, I'm not ignoring her completely, but I'm also not going to make any extra effort. My stress levels are way down already!
Shirebound: Easter Pup - casey28shirebound on March 24th, 2016 10:49 pm (UTC)
So exhausting for all of you. It must be utterly frustrating that your mom isn't fighting for her life and health as hard as she should be. *sigh*

Lucky, lucky Winston. That pup has nine lives for sure.

*encouraging hugs*
dodger_sister: apocalypsedodger_sister on March 26th, 2016 08:16 pm (UTC)
So exhausting for all of you. It must be utterly frustrating that your mom isn't fighting for her life and health as hard as she should be. *sigh*

Mom has some mental illnesses that have played into her desire for attention and to be like, "Why does this always happen to me?" so I tried to be understanding at first, because also a lot of the health stuff wasn't anything she did wrong anyways. But you reach a point where she has to get help and help herself and if she won't, I can't be expected to carry the weight that she refuses to carry. I've been reading about dealing with people with mental illnesses and where you should step back for your own sake and one thing it said was when they are active in their own treatment, try to support them as best you can, but when they are refusing treatment or not trying to get help, you don't have to be there. I equate it to an addict, you can say, "When you're ready to get help, I'll be there for you 100%, but until then, I can't do this." So that's kind of where I'm at. Unfortunately, I see it staying right here for however long she has left and that's the sad part, because it'd be nice to have a decent relationship with her before she goes.

Lucky, lucky Winston. That pup has nine lives for sure.

Definitely nine lives! And he gets to spend his last one here with me, spoiling him and buying him all the toys and treats and letting him sleep in my bed with me! My puppy now!

(we do try to take him to see her a couple times a week though, because that is good for her and now she is at my aunt's, we can leave him there for a visit even. He gets all upset though if he thinks Sis is going to leave him there. Mom actually is kind of upset because he loves her, but it obvious he wants to come home with us.)

*encouraging hugs*

Thanks, babe.
Ironlily - Making My Marquevikingprincess on March 24th, 2016 11:56 pm (UTC)
I think you're making the best choice you possibly can for where things are right now.

Stay strong! :D
dodger_sister: apocalypsedodger_sister on March 26th, 2016 08:22 pm (UTC)
I think you're making the best choice you possibly can for where things are right now.

I was working on boundaries with my counselor, but I wasn't ready to be this hardcore until the day she fell off the toilet, NOT wearing her life alert dammit, and I was like, "Okay, I can't do this anymore." If she calls and wants to chat or whatever, I'll chat with her, but I can't deal with the drama. Once she is able to come over, with more spoons, I thought I do biweekly Racko games with her possibly (an activity is always better) but I have to be strict with myself about staying out of her drama, not answering when she calls about every little drama queen thing, not allowing her to talk about her medical stuff or 'woe is me', steering her from that the way I steer Dad from politics.

I feel so much freer and lighter and less stressed in the last 2 weeks, you have no idea. I'm actually on break from my counselor for 3 months while she's on maternity leave, but I wish I could tell her how good I'm doing, she'd be so proud!

Stay strong! :D

If I start to waiver, you have my permission to bitch slap me around!
Ironlily - Making My Marquevikingprincess on March 26th, 2016 09:58 pm (UTC)
Yeah, refusing the life alert was like refusing to meet everyone even 25% of the way. Bad Mom! No biscuit!

I will either bitch slap you around or bury you in blankies and sit on you with the cats and Winston.
dodger_sister: apocalypsedodger_sister on March 26th, 2016 10:23 pm (UTC)
or bury you in blankies and sit on you with the cats and Winston.

Also acceptable!
lindahoylandlindahoyland on March 25th, 2016 03:12 am (UTC)
Hugs.
dodger_sister: apocalypsedodger_sister on March 26th, 2016 08:24 pm (UTC)
Thank you, your hugs are always welcome!

Honestly, it is sad that Mom is still doing so badly, but I feel so much lighter since I took a step back. Of course, I'll always be her for her, but I can't be here for every little thing all the time and these boundaries have been wonderful for my stress levels. And maybe as she gets to feeling better, I can loosen them a little too. :)
bugeyedmonsterbugeyedmonster on March 25th, 2016 06:59 pm (UTC)
Hugs. Sorry to hear that she's not helping herself. (I'm wondering if a psychiatrist or psychologist could go out there, assess her, and maybe some therapy and some anti-depressants would help? It's also got to be frustrating that your body is rebelling against you, and you can't do what you used to.)

Also wondering if there is some way you and your siblings could get together and have her sent to some sort of assisted living facility. That way she'd have someone around to talk to (other residents) and there would be staff to help with her needs.

OTOH, those places can be expensive. Y'all might have to sell her home and such to get her enough funds.

And Medicare sucks. My mom does better when she has psychical therapy, but Medicare doesn't want to pay for much. Or they want to see great improvement, but my mom is never going to be able to get out of a wheelchair on her own.
dodger_sister: apocalypsedodger_sister on March 26th, 2016 08:43 pm (UTC)
Hugs. Sorry to hear that she's not helping herself. (I'm wondering if a psychiatrist or psychologist could go out there, assess her, and maybe some therapy and some anti-depressants would help? It's also got to be frustrating that your body is rebelling against you, and you can't do what you used to.)

Mom actually has untreated mental illnesses that she has always refused to get diagnosed. Bipolar for sure, but possibly Borderline Personality Disorder. She has told her GP several times that she is depressed and he keeps saying, "Well, of course you are, look at what you're going through!" and then not doing anything. I mean, just because her depression is 'warranted' (whatever that means, all depression is warranted) doesn't mean she shouldn't get treatment for it. Something to take the edge off, and someone to talk to about her frustrations, so she doesn't put it all on us kids. We tried to get her an assessment in the rehab but they said they don't do that kind of thing and since her GP is being uncooperative, we're kind of at a stand still on it. Her GP could prescribe something like Lexapro but Mom refuses to ask for it. It's the mental illness cycle - when you are in the thick of it, you like it, you thrive on it, you don't see how bad it is, so you won't ask for the help you clearly need. There's a part of her that knows this isn't the right way to live - every once in awhile she'll admit it to us - but the rest of her loves the drama and craves it and doesn't really want change.

Also wondering if there is some way you and your siblings could get together and have her sent to some sort of assisted living facility. That way she'd have someone around to talk to (other residents) and there would be staff to help with her needs.

We can't afford it. It cost over $3k a month and is not covered by Medicare/Medicaid. She either has to medically qualify for a nursing home (which she is just a shy bit too healthy for) or she has to go home and rely on nonprofits and family to help her. We are trying to see if she qualifies for Chore Care (home help) that the government would pay for (the way they pay my sister to do my shopping and bathing, etc) so hopefully either we can take some of the chores/etc off of my aunt's shoulders or my aunt can keep doing it but actually get paid for it.

OTOH, those places can be expensive. Y'all might have to sell her home and such to get her enough funds.

If we sold her home, it would only pay for about 20 months of living costs at assisted living, if that even. Which she may not live that long, but she very well may.

And Medicare sucks. My mom does better when she has psychical therapy, but Medicare doesn't want to pay for much. Or they want to see great improvement, but my mom is never going to be able to get out of a wheelchair on her own.

Mom is getting home physical therapy, but a lot of times they get there and she tells them she doesn't feel good enough to do it and they won't push her the way the rehab physical therapists did.

Omg, I know about the 'not paying without improvement' thing. Back in the day, I remember my PT doctoring my file to make it look like I was showing improvement, just so I could keep coming, because insurance doesn't understand about 'maintenance'. Like I won't get better, but keep me in PT and stop me from getting worse. Because if I get worse and can't walk, then I end up in a nursing home and a nursing home is hella way more expensive for my insurance to pay for then sending me to PT once a week. Now they have loosened the reigns a bit and allow for maintenance PT, but only up to a certain $ amount. I had to pay for 2 months worth last year because I ran out of $ on my insurance, but luckily my clinic has 'emergency circumstance' payment so my cost was less and I pay on it for the next two years on a plan.

edited for major typo

Edited at 2016-03-26 08:48 pm (UTC)
Why all the pearls?Why all the hair?Why anything?: B/K comfortrhymephile on March 28th, 2016 04:36 pm (UTC)
Ugh. Just...ugh. This is so stressful even *reading* it! WTF?!

The thing is, if she refuses to help herself, she shouldn't be allowed to manipulate you into doing it. As painful as it is, you're right that you need your life back and get in control of this mess. If she were doing her exercises and not lying to the doctor (!!!) and at least making an effort to get better, that would be one thing. But it seems to me that she has decided to shut down and leave everything about her care to you guys! That must be incredibly frustrating for you.

*hugs* that you get through this.
dodger_sister: apocalypsedodger_sister on April 20th, 2016 09:41 pm (UTC)
If she were doing her exercises and not lying to the doctor (!!!) and at least making an effort to get better, that would be one thing. But it seems to me that she has decided to shut down and leave everything about her care to you guys!

The thing is, she wants to go home, so badly. But she doesn't want to do the work to get there. It's like she thinks it'll just happen. But it doesn't work like that. Her body is pushing against her, if she doesn't push back, she won't ever get anywhere. Wishful thinking doesn't actually work!

So, for reasons, she has to stay here for the week. I laid down pretty hard boundaries and once she settled in, it hasn't been terrible. But I have been witness to her own self-sabotage. Like walking around without her walker while carrying a wet washcloth that was dripping wet water onto the floor and making it all slick and wet and her without her walker, omg! I keep saying, "You're an adult, you can do what you want," because it's none of my business, but it's like she wants to fall down again or something. It really is self-sabotage and she is completely unaware.

Still, I'm sticking to my boundaries, even with her in the house, so it' s going okay-ish. I mean, she's driving me nuts in her regular Mom way, but I'm staying out of the rest of it.
Denidenig37 on April 2nd, 2016 08:51 pm (UTC)
As you said, can't help somebody who doesn't want help. Sad but true.

Pretty sure Winston wouldn't be safe with her, if this is how she cares for herself I'm not sure she would be able to care for him.
dodger_sister: apocalypsedodger_sister on April 20th, 2016 09:45 pm (UTC)
As you said, can't help somebody who doesn't want help. Sad but true.

She wants to be better, but she doesn't want to work for it. It's part situational depression, part mental illness and part her just being incredibly entitled feeling about herself. But until she asks for help, I'm staying out of it.

Pretty sure Winston wouldn't be safe with her, if this is how she cares for herself I'm not sure she would be able to care for him.

This is my thought too. Otoh, he is her dog, she loves him and has had him for ten years and if it were me, I'd want my baby back too. Otoh, if it were me, I'd recognize that I couldn't care for him and I'd want the best quality of life for him, even if it meant giving him up. /shakes head/