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?
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 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!
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.
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.
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.
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?
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.
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.
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.
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.
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!
The first was after Dad's first leg fracture. The PT and OT both wanted to come - not sure if there was a jurisdictional tussle but they did work together. Good suggestions were made, however, I don't think that therapists always know the best methods of accomplishing something immediately.
E.g., the first and latest therapists and nurse all recommended "installing" a ramp as the exterior stairs could be dangerous (I said this over 3 years ago but didn't get anywhere in terms of a ramp actually being constructed).
I thought perhaps I could leverage the current therapist's concern, contacted the building department to get slope requirements, clearances, approved contractors, etc., and literally got shoved off to what I suspect might have been their preferred contractor whose attitude was "I'll tell you all the great things I'll do for you." Yeah, sure, here it comes....a whopping 10 on the BS meter.
Not only would he not come to view the physical situation, he wanted me to send him a photo (I don't even have a camera), and advised he expected me to come to his office for a 10 minute interview at which time he would present his proposal. What?? What arrogance! (I make notes of these incidents for the book I eventually plan to write about humorous and ridiculous contracting experiences.)
The therapist thought I could get a ramp built in a few days. The "contractor" said it takes about a month to get the permitting process completed, then a few days to construct the ramp. When I told the therapist, she was shocked; she had no idea what was involved in constructing a ramp. Good idea, but the details weren't considered.
One of the OTs was concerned about getting a walker in the small bathroom and recommended removing the door completely, eliminating any type of privacy. That wasn't one of the suggestions we accepted.
On the whole, though, the best things they did were to support me in trying to focus on removal of trip hazards. Sometimes that kind of recommendation from an "authority figure" means more than from a daughter.
So, yes, if the PT and/or OT will come out, go for it, but be prepared to take their recommendations under advisement.
I hope it doesn't seem as though I'm challenging your advice, Babalou, because I'm not. I just wanted to share some older and more recent experiences to warn Dman.
We've had VNS in the past, one of the nurses was outstanding but eventually left, as did a few of the other good ones. Dad and I were both pleased with everyone they sent except the OT who wasn't really too interested in the assignment.
Wondering why these good folks had gone elsewhere, I did some research and learned that VNS is now a for profit organization. This should improve on what was already a good business model.
But the local VNS had deteriorated. The intake person was new, had no motivation, no concept of following through. It was her position that it was up to the doctor to fax the script to them. The doctor's staff wasn't any better and took the position that it was up to the VNS to fax the request to them. Sheesh! Neither would budge.
This went on for 4 days while these duds were sitting on their butts doing nothing. I kept calling for a status check, but the answer was always the same: "the paperwork hadn't come through yet." Did they follow up with a call? NO.
I don't entirely blame the VNS; the doctor's staff was to blame as well. After 4 days of screwing around I got disgusted and called another service which got busy and got the issue resolved.
Almost 2 weeks later, the "intake" person from VNS called me to follow up. It gave me great pleasure to tell her I hired someone else and would never consider them again.
It's a sad situation that what was once a great home care service has declined so much. Then again, that may only be in our area.
I also find that getting agency recommendations is best done in person. I recall one discharge RN laying her finger on one VNS local agency name and shaking her head, then pointing to the adjacent one and nodding.
I was also on guard because the last 2 rehab events ended with the social worker making a referral to a company I had never heard of despite the fact I told her we would be using VNS.
But I understand hospital discharge planners are in a delicate position and could be seen as showing partiality if they recommended a particular agency over another.
On a humorous note, while we were waiting for the discharge papers to be prepared, I did have a chance to meet with the in-hospital rep of another agency.
This woman was so polished she could have worked for a Fortune 50 company. She used all the corporate buzzwords applied to medicine, was smooth talking, and definitely very experienced in sales. She could easily have been a top salesperson in whatever company she worked for. But she was just too slick for me.
Maybe next time I meet with the discharge planner I'll take some bagels or donuts up for the staff.
And I do agree that your suggestion for a home assessment is very helpful. I wouldn't have thought of it had you not raised the subject.
I think your perspective on your mother's return home is a wise one - hopeful and positive yet recognizing possible negative factors may arise.
I would also expect your mother to be very tried the first few days as she acclimates to her own home. It's an adjustment, and sometimes there's a buildup of fatigue, especially under the circumstances of an unpleasant roommate. Your mother's probably not getting a good rest right now.
It's kind of like having quit a job and being ready to go and move on but having to fulfill the 2 or 4 week or whatever notice commitment. Short-timers aren't just in the work place.
And it's what she says she wants. I know that sometimes we sort of infantilize the elderly, especially when they're "unsound" (or seem to be) but nonetheless, she's cognizant enough to know where she is and why and she wants to return to her house. I can't (within reason) just discount that, as she's earned at least that much.