Mom's stubbornness is confounding to me...

In terms of Home Health, you might call your mom's doctor's office to get a recommendation, or the discharge planners from your local hospital. VNS (Visiting Nurse Service) has some excellent local branches where my mom lived.

D, you can ask the NH to send someone out to evaluate mom's home for safety, usually it's an ot. We've never had this done but I'm told that it can be extremely helpful.

It will be good to see if mom continues with the nocturnal yelling when she's in her own bed!

Just remember that YOU are going to need regular respite from caregiving. We don't want you burning out!

Just remembered... it's "diminishing marginal returns." Mind's a little rusty; it was over 45 years ago that I took Econ courses. Man, I'm getting old!

It really does make a difference if someone knows how to deal with and motivate older people. I have to remind myself that when I see neighbors and others fussing over my dad and he just loves it. They're not the caregivers though. So I need to try to find a balance between our two different perspectives.

Hope you are able to sleep well and relax as well as look forward to a homecoming for your mother. Do you think her neighborhood friends could come visit her, perhaps one each day? Or maybe even have a little celebration for her.

Thanks for the update; it's so good to read cheery news again.

Thank you GA! I appreciate the tip re: home care too. I think the SW will actually be a real help this time around but yeah, I'm definitely going to have my guard up when dealing with these folks. I'm also going to let him know that she's being discharged when everything is ready and not before and if it means she has to stay one more day or something, that's how it's going to be. As long as everything plays out correctly, though, it should be Tuesday or Wednesday.

I couldn't agree more re: finding people she likes. IMO it's at least part of Mom's problem with the rehab PT. For example, the nurse and aide that finally got her into the lift and into the chair without incident took a friendly "oh, way sicker people than YOU are able to do it" approach and it worked. She responds to the friendly approach and if she looks forward to seeing someone it makes a world of difference.

"diminishing returns".... you must have an economics background! Do you?

Regardless, I'm so glad to learn that your mother will be coming home. There does come a point when there's not much more the rehab facility can do (and graphing it that line would be the downward sloping one), but the home environment can allow for immense improvement, primarily in comfort, outlook and attitude (now the upward sloping line). You're well past the equilibrium point.

I totally agree that it's time for your mother to come home to the things she enjoys.

And, another word of caution: don't let the nursing home social worker make the decision on home health care agency. That's happened to us twice, and I had to be firm to make it clear that we choose our own home health care - this was after the social worker had made arrangements despite having been told that we had a home care agency of our choice.

Find one you like - it's tedious, but think of it as the last step in finding people who you hope will be compatible with your mother so that her therapy can continue at home.

It's been quite a journey, but the end of this trip is in sight again.

Being so bold as to make assumptions for others, please tell your mother we're so glad for her! I'm thinking of cyber roses - a lovely, fragrant bouquet of deep pink roses.

It looks like Mom will at long last be returning home sometime next week. The SW called and told me the "insurance company" is discharging her on Tues. or Wed. (which is false, as the insurance company told me they base that on the recommendations of the rehab staff). I think he's a little edgy due to how I handled the last discharge but this time around I'm not fighting him (other than if I need an extra day to set everything up) as I do need his help procuring various items and information. My gut feeling is that we've reached the point of diminishing returns here anyway, as there's nothing going on there that can't be replicated (or improved upon) at home. I've already documented my frustrations with her PT and that's never going to improve, the PT already has her mind made up re: Mom. I have no reason to think that a visiting PT couldn't do an equal or better job. The doctors there are no great shakes either, while I wouldn't call them "bad" by any means they're certainly not irreplaceable either. Of course the daily care is always a challenge at home but Mom is at least capable of helping more than she was before we learned what was wrong with her, so it shouldn't be as terrible as it was before she was hospitalized. I was doing 2/3rds of it for years already anyhow.

But mentally speaking I think she needs to get out of there. First of all, they have her in an area with other "difficult" patients (due to night yelling and complaining which hasn't been addressed or approached to my satisfaction yet BTW) and she hates it which I can't blame her for at all. She does get out of bed and visit the day room but it's not terribly exciting or anything and as she put it "it makes me feel like I'm stuck in a nursing home". Otherwise it's TV and my visits and that's it. At least at home she'll have a TV she can hear, friends and neighbors saying hi, fresh air, a view, her own music, books and snacks and etc.

I mean if she eventually needs LT care that's different, but right now I have to at least try home for the time being. It just seems right and I think she deserves it after everything she's endured since June.

GA: very good points as always! I really do try to be realistic about it, I can't expect these people to be 100% about my mother as they have over 100 patients there at any given time. I do, however, think they could stand to improve the lines of communication better, as I can't be there 24/7 and sometimes I find myself feeling like I've been left out of the loop. I'd be happy to work around the SW's schedule and arrange meetings with him when he has the time, this could be easily arranged. In fact I'm planning on lining up a "discharge meeting" with him by the end of this week.

As far as the PT goes, I just don't know. I realize she's trying her best, she's probably overworked (almost everyone there seems to be) and she has certain protocols she has to obey. That said though, she could stand to improve her bedside manner a little and she doesn't need to always be so skeptical and negative about everything. It's quite frankly demoralizing. Like yesterday, I show up and find Mom in very good spirits and actually enjoying something and two minutes later the PT is shaking her head and endlessly complaining about something Mom "won't" do. I even attempted to change the tone a little by complimenting her on how well Mom's doing in other areas and she said "that wasn't us". So if that's true, what's the point of this?

Today really is a day for making typos. In Paragraph No. 4, "outlook" should read "outcome on a particular project."

Few comments and observations...

1. I've occasionally received calls from rehab staff, but I've also found it more efficient to attempt to pre-arrange to meet with them when I'm there. My time is important, but I'm certainly not going to advance that issue. Rather, I take the position that THEIR time is important, which it is, and that they're busier than I am, which is also true. So, then, what's a good time for them to get together with me?

2. It doesn't hurt to bring bagels or donuts a few days before you raise the issue of meeting with them.

3. Whatever field of work you were in in your profession, the tables are turned now. You're no longer providing services nor are your services being sought. You're the seeker and will unfortunately be in the position of stroking those whom you need to assist in your mother's care.

4. No. 3 is an aspect I've always found less than satisfying. Gone are the days when I was a valuable employee because of some knowledge or a particularly good outlook. Now I'm on the other side, giving compliments instead of receiving them. That's not meant to infer I was so great that everyone loved my work - it's just an example of how the tables have turned.

So, that's the way it is; I take the attitude that if greasing the squeaky wheels works, that's what I'll do to get the care I want.

This isn't meant to be critical or sarcastic; it's meant to provide insight into the different role we play now that we're caregivers.

Babalou: Yes. They have my number and unless their dialing fingers are all broken there's no reason they can't contact me and set appointments. The PT is weird, she seems to want to "prove" to me that Mom "isn't trying" by having me there to witness it, as if that matters in any way. One thing I've come to notice about this place is that they seem to become very flustered if everything doesn't go exactly according to their plans/schedules/guidelines. Welcome to our world :)

If they want to have a meeting when you're visiting mom, pull out your date book and ask them to duggedt a time. Sorry, I'm busy visiting with moom. Set boundaries.

I did finally get her biopsy results and they're negative, no cancer anywhere. Her doctor also agreed with me about giving her a little more recovery time and I expressed my concerns re: her PT and she says she'll speak to the department about that, so we'll see.

Not be be whiny or anything LOL but right now I'm battling some serious anxiety about visiting Mom during the day. I can't understand why these people won't just call me to arrange meetings instead of chasing me down and cornering me when I least expect it. I mean how do they communicate with family members who don't visit regularly?

The PT was really pushing it yesterday. It'll be such a relief to not have to deal with her anymore once this rehab assignment is done. It's the exact same performance every time too. Like I mentioned above, I told her that maybe she needs a different approach, maybe she needs to re-gear her expectations and maybe Mom has a bad association with her given what happened before.

Hello again all, been offline for a few so figured I'd update y'all!

The good: Mom's spirits are good, as good as they've been in a few months. Mentally she's maybe 35-45% "there", she's making jokes, getting mine, being much more polite and inquisitive with everyone and generally feeling a lot better.

The bad: Although she's been up and out of bed regularly now, she's still resistant when the PT comes around. My suggestion that maybe she has bad memories of her previous PT sessions are largely being dismissed, which annoys me a great deal as I don't see what's so far-fetched about that. Still no word on her biopsy, had to resort to leaving several messages for her doctor and those messages will being to increase in hostility if the doctor doesn't return my calls soon. While Mom does have some increased movement below the waist she still can't really do anything with her legs yet.

The ugly: Today the PT totally ruined a fun visit with her complaining. Of course I realize she's just doing her job and all, but those somber looks and head shakes of hers irritated the you-know-what out of me. She was leaning and complaining again re: insurance and "lack of progress", I just pretty much ignored her and told her to (quote) "try harder then" which I don't think she appreciated too much. But hey, too bad for her and her "one size fits all" attitude. if she can't see the difference in Mom over the last month she's either just blind or stupid and IMO she's way, way too dismissive of the obvious improvement in her mental state which IMO is half the battle.

Apparently they did re-set the Medicare clock, as I haven't heard anything from billing (and I'm sure I would have). Right now the plan is probably going to be bringing her home in (I hope) a few more weeks. I wouldn't have been able to handle it the way she was before she was diagnoses and treated, but honestly now I think it'll go better for both of us. After thinking it over (and after seeing how the LT residents have it) I think putting her in a home permanently would be a huge waste. Of course it'll come with challenges, however so would confining her to a LT home. At least she'll have company, care and stimulation at home, I couldn't live with myself knowing that she was just rotting away doing nothing there for the rest of her days. Obviously you never know but IMO she has some life left in her yet and truthfully I don't see her going anytime really soon, as her health is actually pretty fair all things considered. It'll require some sacrifices but I genuinely feel I owe it to her.

Thanks all! She hasn't been out of bed in any significant way for at least a few weeks and the last time she was for more than a few minutes she was still in all kinds of pain. So it was encouraging. She was complaining a lot, but not about being in pain and wanting to lie down, so I'll take what I can get there. Like I've said in prior posts, it's almost like she's coming out of a coma in a way (not that I mean to minimize actual coma patients, mind you). Some of her memories are all shuffled up and out of order and she doesn't seem to have any real idea of how long it's been since she was home.

I'm supposed to talk to her doctor on Monday re: psych and that biopsy, hope he follows through and doesn't make me have to track him down. Tomorrow's strictly a "fun" visit (or so I hope), planning to make a candy stop before I get there to grab a few of her favorites. Thanks to all for your good vibes!

Yaaaay! So happy to hear this good news. Have a good weekend!!

Glad to hear the good news. Sometimes motivation comes in the most unusual forms.

Yaaaaaaay! It IS huge..what great news. And how nice that they called you!

Well, today I got a call from rehab and I was thinking "what now?", but for once it was good news. They finally managed to get her out of bed and into the chair without a giant freak-out, when I got there she was actually in the day room interacting with people. They fixed her hair and everything, she looked pretty good and comfortable. Granted, it's a small step but a significant one. Believe it or not, I think her new roomie is an incentive as she tends to yell out things a lot and it's driving my mother nuts LOL, so she wants to get out of the room now. Anyhow, any progress is good progress so I can rest easy for a while knowing that a) she's progressing a bit and b) the staff won't be pushing to discharge her based on lack of progress (for now at least)!

I second both Babalou's comment about checking meds and GA's comment about just visiting mom. I'd get a full list of her current meds and have a pharmacist go over them for interactions/contraindications between them, along with her symptoms. Doctors often prescribe without fully understanding how meds work together or in geriatric patients. I'd start there.

And it's always important to try to see our parents as people as opposed to patients. I work hard on that with my mom. Getting her out, just to see other people, talking about current events and the bigger world, just to make sure she's not so singularly focused on her small world. The idea of flowers and a card are great. Maybe her favorite cologne if she ever wore it. My mom loves to smell good, even though her sense of smell is pretty well gone. So think about your mom and what she liked before all of this happened and see if you can bring something that would anchor her in that "healthy" past.

I'm wondering if it's time to introduce just a little I Love Mom therapy.

Next time you visit, forget about the medical issues, the rehab and everything else. Just pretend you're visiting you mother as you would have several years ago, just for the pleasure of being together. Just talk, don't do anything special, don't discuss rehab or getting out of bed. In fact don't discuss anything that's not pleasant or cheerful.

I say this from experience; sometimes it's helpful to just set aside all the caregiving issues and just bond with your parent before all the caregiving started. It can be refreshing and rejuvenating for you as well as your mother.

She's probably completely worn down by medical issues and may even be sick of talking or hearing about them.

Bring her some flowers as well; that always delights a woman. It will also make her feel special when staff compliment her on the lovely flowers. It wouldn't hurt to include a nice little card that she can look at repeatedly and remember that before all this started, she was your loving mother and you her loving son. Try to recreate those days as respite days for both of you.

It sounds as though your mom's mental state needs to be moved to the forefront of investigation. Is there a geriatric psychistrist or nurse practioner who comes in during the week? S/he really needs to be presented with the whole lsundry list of symptoms, which overall, does sound rsther like dementia to me. Is she still on antidepressants and antianxiety meds? I would check the current med list with her RN. Everytime my mom b went into the hospital, something would drop off the list. Hypervigilance has to be the new normal until she gets stable.

As far as getting her out of bed, I'm trying everything I can think of...different med schedule, incentives, humor, anything and everything short of actually forcing her to do it. And I'll keep trying until there's nothing left to try, but it certainly is frustrating. Obviously I'm extremely hesitant to ignore complaints of pain, however I can't tell if she's just feeling soreness or what here because, as usual, she isn't really being specific. She does express a desire to get up and do things but when it's crunch time she gives up, so I just don't know what to think.

GA: If they want documentation for every single transaction, well, that's just not possible. I mean she gets the exact same amount every month and has for years, with a few cost of living increases, tax refunds and property tax rebates thrown in once a year. Mom got a paper shredder a few years back and she faithfully shredded all old paperwork after it built up for a while, so most of the old paperwork is already long gone. It's funny, every month the local senior center has a shredding day where they encourage the seniors to dispose of old "useless" documents and such for the sake of ID protection. Then, later, social services asks for that very stuff. Medicaid wants copies of everything imaginable and some of the stuff they need requires some time to get. I'm wading through it and looking for some reasonably-priced help with it, as paying a lawyer thousands of dollars to do it is just out of reach right now. Bear in mind we're talking about NJ here too, the state that makes a mess out of everything.

Today I learned that her nighttime yelling has run off FOUR roommates so far and three of them didn't last more than a night. Her doctor has been advised and he's supposed to look into it. I don't know whether she's dreaming, waking up and panicking, having muscle spasms or cramps or what. Another weird mystery to crack...Mom's a lot of things but "dull" ain't one of them!

Babalou, your points on administering meds specifically before PT are really important. We had to do that with Dad as well after each of his 2 hip fractures.

Dman, are you required to provide just bank statements or data such as payee, amount, & purpose for each of all of the checks written? I've wondered that as I've read of the Medicaid back data requirements.

I've been thinking about her apparent reluctance to get up and try PT.

I used to consider myself a tough old bird, ready to tackle challenges, physical or otherwise. Then, as happens at my age, I started getting older, less physically flexible, and a little more vulnerable.

A few years ago I suffered some kind of injury that made it very difficult to walk; it was unlike anything I'd ever experienced. The toughness I usually had was hard to maintain, and there were times when I really just did not want to move because of the anticipation of the excruciating pain. I had to force myself to get up. I couldn't force myself to drive and take care of my father though so I adjourned his appointments.

When I reflect on that, I'm still surprised and unsettled that just a minor injury could cause such apprehension.

Maybe your mother is going through something like that - the perception is worse than the actual reality?

Dmanbro, I'm sorry about the paper. No chance that mom has her bank statements put away somewhere? In a shoebox ?

I think it's important to remember that the PT her/himself doesn't have a lot of leeway in "flagging lack of progress". Medicare has very specific guidelines for progress and there's not a lot of wiggle room. Are mom's cognitive skills intact enough that she comprehends that the therapy is important, and that she can't say later?

Two things that I had to change helped my mom make better progress. One was to get a specific order for her pain medication to be given about 1/2 hour before therapy. The other was to schedule an aide to come in and get mom to the bathroom immediately before therapy. It made all the difference in the world.

Basically, she's talk all about wanting to get up and around but when it comes time to try she resists and complains. I'm of course hesitant to dismiss complaints of pain given what happened last time, but the mental element of it has everyone flummoxed. She really doesn't say much of anything other than "I'll try later" and such. The problem there is that the PT will flag her for lack of progress and her rehab will be cut off. All I can really do is to keep trying but at the moment it's frustrating. I'm pleased that they shared the dr. recommendations with me today (although IMO that should have happened first) and we're all on the same page at least, but she really needs to give it a real try and soon.

And today I'm working on the Medicaid application and I find out that they don't need six months of bank statements, they want 54 months worth. It's going to cost me $250 to get those from the bank and it'll take at least a month which means I have to request a later deadline. Sigh. $250 for a box of paper.

Dmanbro, as we said, the cog/emotional piece is a real big piece of this. What does mom say when you ask her why she's afraid to get up? Really does sound like her thinking is not as clear as it should be, especially if the pain has been relieved.

Of course, for someone with some cognitive issues, being afraid that it's going to hurt is as bad as actual pain. Sometimes you have to think about how to coax her in the way you would a young child.

Thanks all, I spoke to PT at length this morning and everything appears to be on the right page for the moment. I did complain about the negativity and what I consider a lack of patience and I advised that perhaps Mom might not have such a bad association with PT if maybe someone else could work with her. So we'll see, but at least I'm sure they're rehabbing her for her post-op state now. I also informed them that we'll have no more medical/business combined meetings, it's one or the other and I don't want them to rush through her rehab time as I feel she merits as much time as is allowed. So we'll see, but honestly it did help put my mind at ease somewhat.

Mom was definitely a real pill today, super grouchy and difficult and I have no idea why. I asked for more psych evaluation, but I've been pressing that for a while now. I don't know why she's so afraid of getting up and out of bed but it's still an issue.

Babalou, thanks for the clarification. I see now that you were thinking of post-surgery recovery guidelines while I was thinking of general bed rest. It's interesting how post-surgical treatment can differ depending on the specific surgery.

GA, that's certainly a good idea, but what i meant to say was that the Kyphoplasty sites all mention that specifically folks who've had this procedure should not stay in the same position for more than an hour. Certainly not in bed for several days.

It must be so disconcerting to folks of our mothers' generation to be told to get up so soon after surgery, when in their youth "resting" was the cure for everything. I remember my mom being horrified that I walked out of the delivery room after having my first child.