Yuku free message boards

Thing are so chaotic here right now due to what was supposed to be a smooth transition using the hospital my mother's doctor is affiliated with's Home Care group having screwed up everything by not following the doctor's instructions that I was supposed to be notified of any meetings they would be coming to her house for, and now, someone showed up unannounced yesterday at her house while I was at the ortho doctor's office to see what is to be done for my neck, and went through the whole process with her, and she doesn't seem to have a clue what she even signed up for.

Another "spur of the moment" nurse called my mother 10 minutes before she wanted to come to her house this morning, even after I'd called the place and told them I was to be notified of any further visits (they said the info hadn't been entered into her "case" on the computer), but what I'd been led to believe from what my mother told me this woman who came yesterday told her, the next step would be another nurse and a social worker coming. Even after my mother told her not to come because I was to be notified about it first, she still wanted to come because she told my mother she hadn't been told I was to be notified, so my mother said ok to 1:00 instead, and let her come, and all she did was give my mother a sponge bath (in a chair no less!) and take the sheet off the bed and put fresh ones on, then she just threw the dirty ones down the stairs! Now my mother has it in her head these so-called nurses are going to be like cleaning women, and I'm worried she's going to tell the one she's got already not to come any more, which I begged her not to do! This stupid Home Health bunch is going to wind up making more of a mess than there already was over there!

So once again, I'll be on the phone tomorrow trying to straighten all this out, not even knowing what went on at that first meeting since I wasn't even aware it was going to take place, until I can find out just what exactly my mother's supposed "case worker nurse" wrote up yesterday. Hopefully!

This is totally making an already extremely stressful situation even more stressful. I told my mother if anyone shows up at her house or calls her that they're coming over, to tell them NO, and that it's now documented I'm supposed to be notified, and I don't mean 5 minutes or even just the same day they're coming. We'll need scheduled visits what with all the doctor's appts. we'll be having to go to, and now my 3-day-a-week physical therapy.

This is a mess. I've already called the doctor about whether or not I should go ahead and make the cancer surgeon appt. for her or wait till we've seen the gastro guy to see what he's going to have to do for her, and when I told her about these "pop in" nurse visits, she told me she distinctly told them I was to be notified. This was before I even knew about this nurse who showed up today, so I innocently told the doctor the woman who'd come yesterday without me being there said, after I called the Health Home Care place and who then transferred me to this woman's cell phone to leave a message for her this morning, that she'd cancel today's "pop in" with this other nurse who'd called my mother early today about coming over (but she either didn't, or the woman just showed up anyway), and at that point I was under the impression the next visit would be the social worker and another nurse, because that's what my mother thought and that's what this woman from yesterday's visits told me would be the case. So the doctor thinks all is going well now!

I am so stressed out right now, I feel sick and am hurting all over. I can't even think straight.

I hope everything goes smoother for the rest of you wrestling with ill loved ones. My situation is going from bad to worse.

Anne - how's Stanton doing?
Lee - how's your dad doing?

I'm beginning to wonder if there are some sort of "anguish rays" aimed at us from outer space!

ozdiamondlil wrote:

---

Rant away Jackie!

Hopefully this case manager will be able to ensure that your mother and your wishes sre taken into consideration and respected. At least it sounds as though you will have a bit more of an idea about what is going to happen and when.

Thanks, Marg, but you might wind up being sorry you said that about the "ranting away"! ha ha

The stress of the confusion alone was making me feel sick! So I had to try and get to the bottom of it fast, otherwise I'd be of no use to anybody, let alone my mother. Ugh!

LeeLee333 wrote:

---

It's true Jackie, this is a great place for you to air your feelings. We have all known each other for long enough now to be able to support one another through tough times. I find it nice to write out how I'm feeling rather than telling people face to face which tends to make me overly emotional.

We're here for you, continue to make use of this circle of friends!

Good luck with everything - I know it isn't easy as my sisters are going through a similar experience with my dad. It's like no one wants to take responsibility for my Dad's health and it's driving me mad with worry. He's festering away in a hospital room and aching to get back home.

Thinking of you,
Lee

Thank you, Lee. We really do seem to be a circle of friends here, and it's good to be able to put words in print when it's hard to even think straight, let alone try to talk face-to-face to people sometimes. Every time I think of what might be coming for my mom, my whole body feels like an electric shock is going through it! But...I know I'm definitely not alone there with Anne and you going through so much pain, too. Sometimes life just hits us over the head with a sledge hammer!

ozdiamondlil wrote:

---

Jackie, how is everything going with your mum?

What a month this has been! I feel like a medical secretary trying to keep track of all the doctor's appts. required even before the surgery takes place!

The decision has been to do a lumpectomy with no radiation or chemotherapy follow-up. It's my and my mother's wish not to put her through that at her age, and since we've already seen the surgeon and the oncologist (who backed us up), now we just have to see the radiation oncologist just as a "formality" so the surgeon will have covered all her bases in imparting all available information to us, even though I've already told her my mom and I don't want her getting radiation or chemo. The oncologist told us that she could risk having about a 20% chance of the cancer coming back in the same breast...but most likely not before a long time has gone by (he's even talking up to 10 years), and if a lump did come back sooner, she could even have another lumpectomy. A mastectomy is too radical for her at her age. And her tumor is still quite small with no lymph nodes felt, but they'll do a lymph node sampling at the time of surgery to remove any cancerous ones if there are any. The oncologist even said to my mother that "she isn't going to most likely die of breast cancer" since she's already 88 years old. His own mother was 86 when she got breast cancer, but he said she was far too frail for anyone to be able to do anything at all. Can you imagine being an oncologist and having to watch your mother die that way!

He did feel my mother still has enough of her health to survive a lumpectomy, though. She's pretty frail herself, but I guess there's still enough fight left in her to get through this, at least I sure hope so. I'm beginning to have a new respect for my mom. Her bravery is breaking my heart really!

At first, I wasn't real sure I liked the surgeon, because she seemed a little arrogant, but I've since cleared up any misunderstandings with her, and she and I are more on the same page at this point, so we'll be going onward and forward in a couple of weeks. My mom still has some pre-surgery blood work to be done, but has already had the pre-surgery chest x-ray (which was fine) and EKG (which showed a mild age-related heart issue, but it apparently isn't enough to prevent the surgery according to the surgeon). Her primary care doctor will be the one doing the blood work, then she's the one who will give the surgeon the final "go ahead" for her to perform the lumpectomy.

But my mom has really been dragged through the mill having to get to all the appts. required. She's extremely arthritic, and of the places we've had to get to, and will still have to get to for the radiation oncology visit, all but the blood test and the gastro issues have been a total hassle for us to get in and out of. It's not set up well at all for people coming and going any more since they did away with their shuttles to take people to the Imaging Center, the hospital itself, and the medical office building where we've had to be going. We've had to deal with me dropping her off, then trying to find a parking place in the maze of a parking structure they have, and then me going back to where she's waiting for me where I drop her off. I finally got fed up with it and have now got the phone numbers of the various locations we have to be for the doctor's meetings and tests, and all the other "stuff", and have been calling them from my car for someone to come and get her up to where she has to go with a wheelchair and telling them not to take her back into the doctor's offices or test areas till I get up there after parking. We've been trying to arrive early so we have time for all this rigamarole, but I swear, I hope she never has to go through this again.

And on top of it, I got a freakin' bladder infection that requires me to take an antibiotic which is one that needs for me to to drink a lot of water with it and the pills also got my stomach a bit "riled up" (if you get my drift), even with me eating yogurt to try and help the situation, so me making it from the parking structure to where my mother has been taken has been a real challenge all by itself! I was about ready to get some Depends for myself!!!! Geesh. This is probably more information than you want, for sure! Thank goodness my last dose of that was today!

Anyway, the occult blood situation turned out to be my mom's hiatal hernia kicking up. The gastro doctor didn't even suggest doing a colonoscopy since he understood how hard it would be for her to get through the prep for it, and in any case, my mother and I remember her having one about 5 or so years ago, so he didn't feel it was necessary after doing an endoscopy and taking a look at her hiatal hernia. So thank God that didn't turn into a horrid situation! The breast cancer is quite enough! She's a little anemic, so the gastro doctor put her on prescription iron, so her hemoglobin has to be re-checked in early September unless he'll agree to go by what the pre-surgery blood work shows. I doubt he will, though, since he wants her on the iron for a specific amount of time, and we'll be cutting it a bit short with just the pre-surgery blood work. But you never know! I really liked the guy's manner and am hoping he'll be flexible about it and maybe just check it later. If her hemoglobin showed in the pre-surgery blood test that it was too low for surgery, then that would be the more important test for it anyway at this point.

Anyway I scarcely even know what day it is we've had so much going on here. My mom's doctor also got her set up with some home aides to come in to give her baths and so on, and I really appreciated that. But even though I call the place and tell them when not to schedule someone coming due to all the doctor's visits and tests and so on, they still continuously get the schedule mixed up quite a lot, and we even had someone show up on her doorstep on our way out leaving my mom's house for her endoscopy. So that's another schedulling "issue" all by itself. I wound up having to tell them to call me to let me know if someone was planning to come to her house, in addition to them having set up a paper schedule for her (which they do not adhere to anyway!), but to only use my cell phone number so I could leave it off and check my voice mail with that so they wouldn't be calling us here continuously at very early hours to confirm their appointments at my mom's and finally told them not to even call her or us before 10 a.m. They were calling here sometimes at 8 a.m. saying they were on their way over to my mother's and would be there in 15 minutes! My husband isn't well, and with all the other things I'm doing with my mother, the last thing we all need is to get exhausted by early, "we're coming right now" phone calls. All of us were going bonkers! So it seems like I have that situation somewhat in control, although they still pop in on her with no advance notice at times. They seem to have finally gotten the "drift" that they shouldn't be calling her or going over there before 10, though. My poor mom needs as much sleep as she can get! I still don't understand the "pop in's" that are still occurring, and I don't like it, but they just don't seem to communicate well at all between their supposed "scheduler", the suppoesed "nurse case manager", and the aides who seem to be like they're kind of just roaming around town "winging it" with the appointments and not really being notified about the specifics.

It's the "nurse case manager" who is supposed to be organizing all this more than she is, though, at least that's the feeling I'm getting. But I do want to keep the aides around for as long as Medicare will pay for them. It's really nice for my mother to be able to get a nice "real" bath and hair washing sitting on the little tub chair I got her. She's been trying to take stand-up sponge baths and washing her hair in the sink for some time, and I feel bad that I'm not able to help her more with getting in and out of a bathtub, but the aides are much younger and stronger and don't have the issues I have with my neck and back problems. And with no siblings, it makes helping her with a lot of things that need doing all that much harder. Oh now I'm starting to really WHINE!

I only managed 4 physical therapy visits for my neck and posture problems, but my stupid insurance's co-pay was too huge anyway, so now I have a home exercise plan they gave me that I'll have to make myself stick to religiously. I didn't seen any benefit from the PT at all anyway, but with only 4 visits, I really can't blame them for it not helping more than it did. I did think I'd get more from them when I went for the visits other than just a neck massage and a heating pad, though! The PT would then just send me home with a couple of exercises to do here, all for the outrageous co-pay cost of $100 a visit! There weren't any other "in network" places for me to go that wouldn't have involved driving too far, and with everything else going on here, I simply don't have the time for any drives longer than this one was, so since it was considered an "in hospital" visit, even though it was a hospital-affiliated free-standing place, the co-pay was $100 a pop since they bill through the hospital itself. We're getting rid of this particular Medicare-approved health insurance plan we have in November when we can change insurances. This one doesn't cost a lot up front, but their co-pays and restrictions are turning out to be ridiculous. And their "customer service" is deplorable.

In any case, that's an update to what's been happening around here so far. Now we just have to get this other doctor visit out of the way and the blood testing done and my mom's primary care doctor's "go ahead", and they can finally schedule the surgery.

Beam me up, Scotty!!!!!!!!!!!!!