July and October reports...and in December, the end of this era

[kaoden39]

It sounds like you guys had some MAJOR heat. To me Disneyland is not a whole lot of fun when it's hot. I felt your pain about the great sunglasses search. The kids have lost things at the parks and we have never been lucky enough to find them again.

 

[Sherry E]

I wouldn't have been able to take the heat. I would have gotten very ill. Poor E - I feel bad for him - the heat headaches are not fun.

How wonderful that you were able to get the sunglasses back from the janitorial person! I hate hate hate the feeling of losing something I really adored, knowing I will never get it back. It's happened to me. I was sick about it.

I like those candy packages too! They're very clever.

The pumpkins at the Round-Up/Ranch/Carnival/Jamboree are always the best part of that spot, because they change all the time.

I like seeing pictures of the Carnival so I can get a better handle on what it actually looks like, but I'm still not thrilled with the idea of it. I can tell that a lot of the cute harvest-y decorations that were there last year are not there this year. The walkways are too empty for those decorations. I don't like the meet-one-Villain-at-a-time-and-you-have-no-clue-who-it-will-be concept at all. I wish they had just left it as the Round-Up.

 

[bumbershoot]

As I was typing out day 3 I was called by the brother in law. MIL was having another stroke. I went up, did my layperson's evaluation, called her GP, trundled her in the car and took her to the ER. That was at 2. I'm just now home.

This one was...worse. This had facial involvement, a weak hand, (both of those things were transient, though the facial drooping lasted hours) a broken blood vessel in her eye, some SERIOUS forgetting. It was also preceded by not taking her drugs Thursday or this morning, not eating, and not checking her blood sugars pretty much since she got home.

Betcha know what the family has now decided on in terms of where she will not be going home to.

Sigh.


E and I are cuddling while I type this and he watches a little Lazytown for comfort before bed.

 

[DizNee Luver]

I'm so sorry Molly.....what a hard time for you and your entire family. Sounds like she is going to need round the clock medical observation. Saying a prayer for her and your family!!

 

[bumbershoot]

Thanks Laurie, yeah, this one has landed her in the world of memory loss, or the D word. Of course none of us want that for ourselves, so it sounds silly to say this, but this is something she NEVER wanted. Sadness.

She was trying to get me to stay home today, but Robert wants to do a video-call with her today so I have to bring my laptop or his work ipad or my phone up there.

And later I have to find his POA forms b/c the time has come to get her finances in order for Medicaid etc etc for all of this to move forward.

 

[kaoden39]

Molly, I am so sorry to hear this latest. I hope they aren't rushing her out of the hospital before she is ready.


Are you all going to look into assisted living for her? That is a chore in it self.

 

[bumbershoot]

Oh yes, AL is a must. She has completely rejected, even when healthier, living with family (even if there were family in a living situation that would work). And she has rejected living with her best friend (who offered).

But taking her drugs, feeding herself, and watching her blood sugar aside, the next problem might be stove-related, or similar. As my grandma went into Alzheimers, she started keeping her plastic-ware in the oven, then one day decided to make a baked potato. My aunt came over just in time to find plastic-fumes and smoke coming out of the oven, with my grandma absolutely clueless. In MIL's case, it wouldn't just be her and her own home at risk, but an entirely apartment building of seniors. Not good.

And yes, I'm overwhelmed with figuring this out. Tomorrow the SIL and her kids will be in town, and I'm sure we'll all get together to talk about this. Robert, of course, will have to join in by phone.



Eamon, meanwhile, has Jonas Brothers on his ipod while he pretends to play his Guitar Hero guitar and sings along. It's not at all amusing. Ah who am I kidding, it's hilarious!

I hope his cousins can be as Zen as he is about grandma's memory lapses.

 

[bumbershoot]

Thought I was going to do more trip story, but it just hit me how exhausted I am. The nurse even said I looked wiped out earlier. Guess I need to believe her. So I'm going to go to bed early. I put the heavy comforter on the bed last night, and it was so incredibly cozy I wanted to stay there forever. Alas, then MIL's doctor called.

The SIL and her girls get in tomorrow, as I think I mentioned, and I have to be up bright and early so I can see them before they see MIL. They need a head's up. Wish I had had one today. Definitely not herself.

Goodnight, and thank you so much for continuing to listen.

 

[kaoden39]

Molly, I hope today goes well. Maybe with SIL there you can all sit down and figure out what is going to happen with your MIL.


I am so sorry you are going through this.

 

[bumbershoot]

OH gracious, what drama. SIL couldn't make it due to some sort of something that only happens to her, then BIL was super-late, and it all came out in a sideways sort of accidental conversation and the concept of assisted living caused her to tell us that she'd simply kill herself.

Strangely, this did not cause the nurses to commit her, even though they were told.

Funny, because if I went into a hospital and told them that I'd kill myself if xyz happened, I'd get forcibly medicated and sent to a different part of the facility.

Weird.

Spent all day with various people sobbing and/or screaming (OK I didn't scream but others did). I walked around apologizing to the staff for the kerfluffle and noise. Oy.

And at the end of the whole day, when Robert got on the phone with her and talked as calmly as possible, it turns out she thought we were just dumping her ANYWHERE, tomorrow.

And when I found that out on the phone with him, I had E put on a movie, I went to my bedroom telling him I was going to have a tantrum but would be OK, and I went and screamed on the phone with Robert about that. We used ALL the words, we explained COUNTLESS times, in English and Korean, what we were talking about, and that is what she took away from it, that we were just going to dump her in any old place?

omg.

And I cannot even think of today's care manager without getting angry again, because she undid hours of work and emotion by traipsing in telling MIL that no one could force her to do anything. MIL fools people who don't know her...it's why I wish we could have just had her STAY at the hospital so she could have continuity of care by the same people, instead of fooling each new group of nurses. Oh she's so pleasant, she's a nice lady, oh she's so young, oh shes whatever she absolutely ISN'T.

too much, too many emotions.

She thinks of her memory problems as being "mistakes". She's bargaining, making deals...if she makes another "mistakee" then she'll go to assisted living. Because we can control our memory, we can control when we have strokes. If we could control these things, wouldn't she have already done it? The next mistake could be burning down her building and killing the people around her. We see this so clearly; why don't they?

She even showed her lack of comprehension or short-term memory in front of the care manager and neurologist, b/c after two big long conversations about what sort of changes in care of her strokes should be made or not made, after talking about how we'll just keep her on the same things she has had, because doing a surgical angiogram wouldn't make sense since she has refused surgery (especially to put a stent in a vessel inside her skull), so why get the information. At the end, she approached the doctor TWICE, almost in a row, to ask when she would be having that test. Twice. IN a row. But they don't see the deficits in memory.

Sigh.

And it's not like we WANT her in assisted living, but on the other hand, she would be MORE FREE if she were there. No more depending on me for things, no more depending on friends to bring her food or groceries. She'd have nurses there, she'd have the cooking done for her. She would probably have a van to ride to the store/mall/whatever if she wished. Visits by family to her could be VISITS, not medical examinations. etc etc. But she just can't get some scary institution from the '60s out of her head...


Blah blah blah, sorry about all this and thank you!

 

[kaoden39]

Molly, I hate to sound awful and please forgive me but she sounds like a major manipulator. She is probably afraid of the unknown so she if fighting it. It would be so much easier for her if she was in assisted living. There are some nice places out there now. It's not like it was years ago where they are put into a hospital like room.

 

[bumbershoot]

Michele, you hit the nail on the head. Perfectly, and there's no offense taken. In fact, you've been virtually high-fived.

Today she was talking to Robert via a gmail "hangout" (video call) and got upset and was crying, and I went over and hugged her. Later, when it was just us, she started "crying", aka NOT crying at all, and I had to leave the room. There's a difference, and I KNOW that difference, and I cannot stand fake crying, even in someone who is otherwise righteously upset.

Everyone in the family can tell that she has reverted back in her mind to back when she didn't like me. It's not her fault, she didn't ask for this, I can't be upset with her for being back to that point her in head...but gosh darnit it hurts. On the other hand, Robert's brother and sister now like me, and they are on my side, and BIL feels totally bad for me (SIL probably will too, but she doesn't really know yet).

Ugh, that feels like "it's all about meeee".

I feel sad that she thinks that these strokes somehow reflect badly on her as a person, or that she can control them; that she feels like they are "mistakes". I feel sad that she's losing her memories. I remember how badly my grandmother felt as she went into Alzheimers; how scary it was for her. I really really feel for my MIL. It's not fun and we know this. So when she's actually upset, we hurt right along with her.

Sigh.

 

[nancy drew]

Is there some sort of, I don't know, counselor person who can ease your MIL's mind about assisted living? I hope this doesn't come out the wrong way, and I'm not aiming this comment at you, but surely your MIL isn't the first person ever to fight the idea of AL, and I would think (and hope) that over the years there has been some sort of protocol among hospital staff and AL staff for presenting this as beneficial, not scary.

Have you chosen an assisted living facility (I hate that word)? Maybe they have someone on staff who can come and talk to your MIL and help put her mind at ease?

 

[bumbershoot]

All of this has been put on me, and between sleeping, taking basic care of E, and visiting the MIL, I haven't had the time to go looking. Yesterday I thought it would be brought up, there would be resistance, she would get used to it, and I'd go tour at least ONE place (right near our home).

Instead, when I got BIL out of the room and let her friend talk to her (who has friends in AL and knows it's not prison), a care manager (social worker) came in and undid it ALL. Said that no one could force her to go, etc etc, that it was HER decision... Undid it ALL. And it's not like we WANTED to do this; her doctor at the hospital told me that he woudln't let her go until we got this in place.

Today he's letting her go. With NOTHING in place. When it could have been at least almost in place, except that the social worker messed it up.


Of course then she got a chance to actually MEET my MIL and watch her memories come in and out, watch how forgetful she is now, and SEE the reason why the doctor was saying that, and as we were prepping to go last night was acting like the savior, that she would bring in pamphlets for MIL to look at. Oh, like the pamphlets all the other care managers gave us?

I just talked with the doctor, expressed my issues with the care manager, and requested a new one. And explained to him that our AL discussions were because of what HE had said.

The care manager is the one at the hospital who would be the AL cheerleader, and yesterday she did not fill that role.

Barely slept last night except for between 2 and 4. Tried to sleep, went to bed at 10, but it just didn't work.

 

[6Smiles]

Molly -

I'm sorry you are having to go through all this. I know as a caregiver/nursing student and watching several families have to try and make these decisions the case managers can be either the best advocate for the family or undo all of what your trying to accomplish which is what it sounds like this case manager did.

If you could possibly speak with her nurse and have her advocate to the case manager given her intimate care role with your MIL that can sometimes help sway the doctor for more time and case manager to do what is best for the family all around.

I pray a resolution is swift in coming and will keep your family in my prayers.

Kris

 

[nancy drew]

Ugh, that is so awful. I am so sorry. It sounds like they are rather disorganized.

 

[kaoden39]

Molly, this is about you too. Obviously you are the one that is left the chore of taking care of this. It is not an easy chore, there are so many aspects of picking out a AL place. I am so sorry that you are all having to go through this. Hopefully the Dr or nurse can step in and help fix what the case manager did.

 

[suzcruz]

longtime lurker on your threads but speaking up now to say,what about hiring people to care for your MIL in her home? my MIL has dementia and we have 2 people (one during the week and one on the weekends) who live with my MIL on a 24 hour basis, cook & clean for her, drive her to doctors appointments etc. The two ladies treat my MIL so well plus they are so much cheaper than assisted living. Assisted living for dementia patients is MUCH higher than regular assisted living. hope this is helpful in some way to you

 

[DizNee Luver]

Still thinking of you Molly.....hopefully things will fall into place and life will calm down a bit for all of you.

 

[bumbershoot]

Thanks to all of you!

longtime lurker on your threads but speaking up now to say,what about hiring people to care for your MIL in her home? my MIL has dementia and we have 2 people (one during the week and one on the weekends) who live with my MIL on a 24 hour basis, cook & clean for her, drive her to doctors appointments etc. The two ladies treat my MIL so well plus they are so much cheaper than assisted living. Assisted living for dementia patients is MUCH higher than regular assisted living. hope this is helpful in some way to you

I don't know where the money for that would come from. I got a look at several months of bank statements, and honestly I'm not sure where her food money is. It's nearly even with Ss and widow pension coming in, then rent at her senior housing place and all sorts of insurances. Craziness. We could help for awhile, but it would be a burden that the other sibs couldn't help with. We're still trying to get a handle on all the options, and the care manager was absolutely useless with that. Best she could manage was to bring up a company called Fedelta. Oh thanks, helpful. (I mean, I WILL contact them, but she tells us about that and hands MIL pamphlets on what's GOT to be the MOST expensive place in the area, that's also an HOUR away and across a TOLL BRIDGE from any of us???? seriously? that's all she's got?)

I told the care manager exactly what I thought of her nonsense yesterday, and I did it in front of the doctor AND the entire nurses's station. Not loud, not obnoxious, just very matter of factly to let her know it was inexcusable, unacceptable, and terrible. That their family has their own dynamic, and she messed it up. That she needs to be more observant about last names and not assume that families must "match". And, MOST importantly, we were ONLY doing it because the doctor (that was standing right there) had TOLD ME that she wasn't being released until we got AL set up!!!!!

She took it professionally, but I'm not sure it sunk in.



I've never felt closer to my BIL; he sent me the sweetest text message, made me cry happy-tears today.

I went nearly hysterical AFTER talking to the care manager about her "care".

Got to explain to MIL that "giving another chance" isn't going to be "sink or swim". That we have to get things set up to HELP her, so it's not all up to her and her faulty memory.

There are two areas I'm never going again with her...one, this memory she has that directly goes against the diabetes educator last Wednesday, the Home Health nurse last Thursday, Robert on Friday, and ME all of those days b/c I witnessed the first and was told about the second and third...which she is convinced we're saying she is lying about, and because the reality has been covered by this incredibly fault memory in her head, she won't accept it. And also, the concept that she is human and gets to have a say in things (uh duh, but we're not saying you are *lying*, we are saying you are having memory problems!). WILL NOT go there again with her, and stopped the convo cold when she started looping into it for the tenth time today and beyond.

She still doesn't remember the "new" HOV lanes near her place, and didn't recognize my car again, and was mystified at the construction on the highway on our way to our home, but she seems to get that I have done a lot for her, and it seems Robert has convinced her that she does, in fact, like me. So that went better once she got the sucked-on-a-lemon face gone.

If you're upset enough at a hospital, the pharmacist will offer YOU drugs, LOL.

She *says* that she will look at AL places once Robert is home, with him, as he is the brilliant favored child of all children now, because SHE had calmed down by the time he talked to her again. She forgets that HE was the one, with me, that brought the whole dang thing up, and is acting like the initial problems were MY fault and her older son's. Whatev'. Another topic I won't loop around with her again.

I spent a couple hours with her at home, and got it all resolved that she would eat at 6 and take her pills, and she would call me when she did that. As I left *at 5:10* I saw BIL's ex, going for a visit, and I talked with him. She had JUST called him (what, the second I left her apartment?), she was eating, and was happy he was coming over. Uh WHAT? What happened to 6pm? Well, I told him that she needed to take her dinnertime pills. Sigh.

Obviously...this isn't going to work. Of course, AL wasn't going to stop the strokes. No one, not even the doctors, are convinced that anything is going to stop them. They don't know why they are happening and there's nothing obvious enough to DO, other than the drugs. So really it's just about making sure she's taking them AND trying to keep her from burning the place down, before her next one.



I hope I can sleep tonight without bursting into tears every half hour. I really really hope so. If Robert were here, it's entirely possible I would have taken that pharmacist up on something for tonight (shocking, I know!), but I gotta be conscious for the kidlet!