So she's in her second week of rehab. Every time I visit she just wants to "lie down". Plus she has a completely unbelievable fear of falling, I mean she's comfortably in bed and gripping the railings like she's on a boat being tossed at sea. She says there's no vertigo or dizziness there either. Today I merely tried to raise the bed a little so she could eat properly and see me and she starts carrying on like it's the worst torture imaginable.
So I was talking to the therapist and she tells me that on Friday they had to change the mattress so there was no other option but to get her in the wheelchair for a while. This has been a goal since day one. She tells me that after a brief struggle she did get in the chair and remained there for a few hours with no issues. I was astonished as Mom never mentioned it.
So today I'm there and we figure let's go for it again. They sit her up and immediately the death grip begins. This little old lady who's always too weak to move was fighting off three people and resisting with everything she had. There was no risk whatsoever of falling. Eventually the therapist had to give up and i could see the annoyance there, as I felt it too.
I'm wondering if maybe it's me. When I'm there she never stops with the hapless routine and the fear of falling, then I hear that while I wasn't she's actually doing something. Perhaps i should skip a few days and see if it helps?
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!
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.
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.
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.
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.
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?
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.
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.
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.
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!
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.
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.
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!
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 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?
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.
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.
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.
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.
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.