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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?

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My sig other when he has a cold acts like he is on his death bed, but I will overhear him talking to his daughter on the phone saying he is feeling fine, just a bit under the weather.... say what? I am the opposite, I can feel like I fell into a cactus plant and walk around like there is no problem.

For some reason some people will put on an act, whether to get attention or to make us feel sorry for them.

Try skipping tomorrow but go the next day, tell Mom because of the time you spent at the dentist and recovering, you were behind on your work/chores. Try every other day, then ask Rehab how Mom is doing.

The fear of falling is so very real. I broke a shoulder falling in a parking lot, and for two months I had a fear of falling down the stairs because the handrail was on the side where I couldn't use that arm to grab the rail. Rehab is helping me get use of that arm again, so now I can use the handrail, thus the fear is started to disappear. At your mother's age, it make take longer.
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Does she have vertigo? It can be devastating with the instability it causes.
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dmanbro, I think your idea about skipping some days is an excellent one. I may give some time to get your mother back in her chair and give you a break, too. You can stay in touch with the rehab people and judge what you should do from there.

The death grip does let you know she is afraid. Maybe if she doesn't feel the pressure to perform, she'll do better. It can be hard to know what is going on in their minds if they don't tell us.

My father had a bad fear of falling that went along with his mixed dementia and balance problems. He stopped getting up and down except when he had to. I hope the rehab people are able to give your mother back some of the confidence she needs to let loose the death grip she has on the things around her. I know it is miserable for her.
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errr... you don't need me to give some time. IT may give some time. :-D Boy, did I ever sound narcissistic.
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Sorry, I missed your statement that she doesn't have vertigo.

After reading this post and recalling your other posts, I don't really think your mother is stubborn or being uncooperative. I think she has a real fear of falling, and this needs to be recognized. And she should be treated with the respect of someone who does have a legitimate fear.

I think it's often so difficult to figure out what elders are doing or thinking and whether or not there's a legitimate issue. We can't switch places with them, and by the time we're old enough to be in a similar situation it'll be too late.

Your mother must be terrified of falling, for some reason or other. I can't help thinking there's something more to this.
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GardenArtist: Everyone has asked and she says no, except for after PT when her BP is climbing when she complains re: dizziness. She has no vision trouble either and her appetite is very strong. Believe me, I know her fear of falling is definitely real but the way it manifests itself even in situations where there's no possible way to fall is alarming. I totally get her not being confident where walking is concerned, but even raising the bed to a 45 degree angle sends her into a panic where she's gripping the railings like her life depends on it. If it is a pain issue she isn't identifying the specific source of the pain either other than a generic "it hurts" which could be from any number of things or nothing at all. So it's vexing to everyone. She still has pretty good upper body strength for a woman her age, I'll tell you that. She isn't just going limp when pressed to get out of bed, she's fighting back and with vigor too.

JessieBelle: I suppose it really can't hurt, I'd really like to speak to the staff so I'm seriously thinking about just "spying" tomorrow without her knowing I'm there. A this point any idea are welcome. Thanks as always for all replies!
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My husband says his charge is also afraid of falling. I looked it up and it is common with the imbalance issues surrounding Parkinson's. I believe that once the patient has fallen, no matter how brave and independent they are, their fall risk is greater and a professional assessment should be made, perhaps more supervision. We just never know what balance issues or fears are going on in their heads if they have dementia. There are, however, passive maneuvers to assist the patient to regain their balance if they are dizzy. The rehab should be aware of these, or ask the doctor. If the room was circling around you, wouldn't you hold on for dear life? There are medications, if it turns ouf to be dizzyness.
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Had an epiphany this morning when I was stressing about something that in the whole scheme of life would seem minor, and had to ask myself why this particular issue was so problematic. Trying to put everything in perspective, I realized that when life's focus narrows, when someone is older and not very mobile, not free to get out and drive wherever as the whim strikes, the world begins to close in.

Options and activities can diminish, the focus begins to be on the immediate surroundings and issues, not seasonal or annual or long term plans. As the scope of planning and thinking begins to narrow, so does the focus on those issues. I think it becomes more like "just get through today!"

I think of the issue now as a cone shaped problem - as people slip to the bottom of the cone mentally, those thoughts, fears and preoccupations become more compacted as others are squeezed out.

This made sense to me, so I resolved to plan some massive garden programs for this year, as well as Fall and possibly winter activities so I can reset my focus to longer term and stop fussing about something that could take up to only an hour or so of my time.

Dmanbro, try to shut your mind to everything except being in rehab, being afraid of falling, and having a lot of strangers around you. Think about being in that situation, and think about it for several hours, making sure to block out thoughts of anything else. Perhaps you could even just spend several hours in one of the visitors chairs.

I wonder if it will allow you to enter your mother's world for awhile.

With all the technology being used for so many different things, I'm wondering if someone has created a holographic program by which caregivers could temporarily enter the world of their parents/relatives and experience first hand what it's like to have life slip away and become more and more confined.
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Back to your comments, the dizziness she experiences after PT can be so destabilizing that she could develop an anxiety toward PT. If you've ever had vertigo and held onto something because the world was spinning, you'll know it's a terrifying feeling.

I think this is an issue to explore - what is happening during PT that her BP rises? Is it the anxiety, or is there a medical issue? Is her BP stable otherwise?

Therapists are creative; perhaps they can find a different approach to avoid BP spikes.
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GardenArtist: her BP and heart rate spikes during and after PT due to her resistance and panic. For example, yesterday. The therapist swung her legs out and just asked her to sit upright on the edge of the bed. There were three people there, no chance she could fall. Once upright she began losing it, "I wanna lie down, gimme my pills, I'm gonna fall!". Then she sort of hunches over and grabs whatever is nearby while simultaneously trying to "flop" over, it's a mess. Then lunch arrived and she started wolfing (and I mean wolfing) it down, almost in defiance, like she was trying to say "look, I'm fine". It's like she can't focus on anything but wanting to "lie down". They've achieved some success by distracting her during PT but it's always very tenuous as she might break down at any time.

She's always feared falling but the panic attack end of it is a new phenomenon that only started barely a month ago. There's no evidence that any sort of incident triggered it either. No sign of a fall, no sign of injury. It's a sudden terror that erupts over the mildest situations, like trying to raise the angle of the bed for her. She's on anti-depressant and anti-anxiety meds and thus far they've done nothing. Stronger anti-anxiety meds just make her fall out completely for the day, which is just as counter-productive as the attacks are. When asked to point out any specific pain or malady she denies anything is wrong and says she's "fine" which makes diagnosing her issues that much more difficult.
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you could try acting as though she is perfect, be real mnice to her, no confrontation and see what happens. some sympathy might surprise her, and maybe the result will surprise you both! hey, it is hard, and you sound lovely, and like you give of your best. this might kickstart a change. your mum is determinedn and stubborn, and wants some sympathy. give it, get past it and see if she relaxes into the lovely person she is. if it does not happen at least you tried. hope i am not intruding into something more complicated. if so, apologies.
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Having suffered myself from panic attacks I know that rational thought has nothing to do with it. She might know there is no way to fall surrounded by three people, but there is just no way to turn of that fight or flight response. The staff should be more understanding of this issue and be able to find a way to work around it, or treat it.
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The difference between your being there and your not being there is that the staff are inured to your mother's howling protests and know when they can be safely ignored. Less easy to ignore them when there's an alarmed relative in the room. It's not that you're doing anything wrong, it's that the staff don't want you being upset by what could look like - could look like, not is - cruelty to your mother.

The sensation your mother is feeling is real, I imagine caused by some kind of imbalance in her inner ear that settles down once she's been in a sitting position for a short while? Weird! But she's not making it up. Has she had any change of meds or infection recently? What's she in rehab for?
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CM, dmanbro's mother went to the hospital because of severe lethargy, got better, then was sent to rehab. She lost the use of her legs and started not wanting to sit up while in rehab.

dmanbro, your mother reminds me so much of my father that I am wondering if she might have some vascular dementia. My father was not incapable, but he had a learned helplessness that was hard to explain. He was very afraid. The 3 times he fell, I could have probably gotten him up, but he locked his abdominal muscles and pushed against me, instead of with me. The few times I was able to get him to get out of the house to go to the doctor, he had a death grip on the railings. One time I couldn't even get him maneuvered into his wheelchair. He tried, instead, to sit on the ground. I wouldn't let him, but it was a battle. He locked all the muscles and worked against me. I don't know why he did it and I doubt he did, either. He had not been diagnosed with dementia at this time, though I knew he had it. Your mother's behavior reminds me so much of his that I would suspect that she may have similar problems -- some dementia, great fear, and a feeling of helplessness. Everything is turned inside, so it is hard for them to trust someone trying to help.

The good thing is it may get better. My father was 90 with a very damaged vascular system and failing organs. He was also deaf and autistic, so hard to help. I hope that your mother fares better than he did with the help of her PT & OT people.
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Today I stopped by right before her PT so I told them not to say anything, as I wanted to merely observe from the hallway. Not good. Made it to the edge of the bed, kicked a little then fell apart again. I hung around for a while while she ate (appetite still large) then they tried again. Every possible excuse ("tired, need to digest, have to go to bathroom, didn't get pills yet, tomorrow") then same as before. "No no no no, I wanna lie down, gonna fall" and etc. Every single therapist thus far has remarked that she has terrific upper body strength for her age but none of them has been able to crack the mental barrier. Me either. I suggested maybe giving her a dose of pain medication early in the day, either to relive the back pain she feels (probably inactivity) or even just as a mental "boost" so we'll see. But nothing seems to be getting through, unfortunately. The ultimate goal is a modest one: get her comfortable in the chair and able to enter and exit a car so she can go home when it's time but right now she's not there.
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Has anyone suggested an xray of her spine? Might she have a new compression fracture? They are terribly easy to get at that age. My mom's went undetected for several days.
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Babalou: She's had two x-ray series and two ultrasounds in the last month, all negative. Suggesting it again, but it's tough as she's very non-specific about where the pain is emanating from. Also discussing pain management in case it's "just" chronic arthritis (certainly not trying to minimize that, BTW). I can say that the pain does not appear to be constant, she doesn't complain about it unless she's made to move.
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Has anyone mentioned doing PT in bed? Both my parents had it; at least it's a way to get started on the muscle strengthening without going through the ordeal of trying to get her to transfer without fear.
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GardenArtist: She does, but her legs are very weak right now so it's pretty much just bending and having her push and etc. She'll do upper body and arm exercises unprompted and as I stated above she's not weak at all despite her claims to the contrary. I (along with everyone else) have explained that no one is asking her to walk unaided or put herself in any kind of danger of falling. But if she could just manage to sit in a wheelchair and move around it'd possibly be easier to diagnose and work on whatever else ails her. She's had a lengthy period of inactivity now and I'm afraid she's just gotten too used to it.

My big worry now aside from her health is that the first twenty days that her Medicaid covers is halfway finished and the copay after that is way out of her range to cover. I'm planning on speaking to the admin who covers insurance matters tomorrow to see what kind of options we might have. I'm preparing to bring her home if there's no other option, as she doesn't have the assets to fund long-term care especially if she's just going to lie around all day anyway. And if she can recover somewhat, she'd need somewhere to come home to as well.

One thing I'm almost certain of is that if she can get into a wheelchair and be comfortable in it she can regain enough mobility to at least help in her care. She has the strength to push herself in a chair, it's just a matter of getting her in one. I won't give up on her, it's just discouraging at times is all.
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Dmanbro; that's EXACTLY what was going on with my mom, both when we discovered the broken hip (second xray) and the compression fractures in her back. Dementia patients can't locate pain. My mother finally managed to tell me that the pain was in her back, which led to a confirmatory xray and lidocaine patches which have been quite effective.

I'm curious if your mom was a manipulative person BEFORE all this. My mom was not. Depressed, anxious, yet, but never a manipulator or a malingerer. So I was CERTAIN that there was real pain and the problem finally got solved. The broken hip was ascertained by the PT who was working with her who realized that she wasn't bearing weight on one leg.
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Well today I decided it was time to push the envelope, so to speak. Typical morning, "blah blah blah, maybe tomorrow" and so on. PT arrived and I just said 'follow my lead here". I got her to hold on tight and lifted her up and boom, into the chair. "I'm gonna fall, I wanna lie down, help meeeeee!" and so on. So I answered every complaint with a counter. "You ARE outside! You ARE sitting down!", every "no no no" with "yes yes yes". And we ended up spending an hour and a half cruising, eating ice cream and finally DOING something. It was a small step but a forward step nonetheless, so I feel like it was a fruitful day. Finally.
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All hands and paws are applauding here. Way to go, dmanbro! This was a huge step, IMO.
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Good job!
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Thanks all, it was really nice and good to see. Yeah, the panic was there but it was manageable. I just couldn't wait anymore, had to break through the procrastination today. We're going for it again tomorrow and hopefully it goes even better. I think that once she realizes she won't fall out of the chair she'll relax and eventually forget, at least to a degree. The therapists were a little hesitant at first but I convinced them that I could get her off the bed and into the chair safely, they were a huge help too.
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Earlier in the week it appeared that we were making some real progress. She got into the chair, went outside, she even did a little light PT work that gave me some encouragement. I normally tend to be an optimist and I've been giving it my all, but over the last two days my hopes have been dashed pretty badly. She's not panicking quite as much but she's just flat-out complaining more than ever and mentally she's a train wreck. She'll resist two people trying to sit her up with amazing strength, she'll hang on to the bed railings with a death grip, then she'll bellyache about how she's "too weak" to lift a spoon or a cup and she'll say she "needs" to be fed by someone. Even worse, she'll just seemingly forget how a cup or a table even works, spilling drinks all over the place and dropping everything even though the table is literally inches from her. And trying to have a conversation with her right now is totally impossible. She'll do a cognitive test and answer every question, then she'll babble and drop weird non-sequiturs out of nowhere in a half-asleep daze. Several aides (and even her roommate) have asked me if she's on some sort of potent narcotic drug because it's exactly how she acts, but she is not. And now I hear that she's waking up in the middle of the night, crying out for people or things then immediately falling back asleep before the aides can even get to her.

And on top of that the fully-covered part of her stay is nearly over and at the end of the week the giant co-pay part of her coverage kicks in. We can fund a week or two up front but after that, unless they'll work with me on some sort of payment plan, it's either bring her home or give up her only asset, her home. Which is another huge worry for me as for the last few years I've been living and working from the house and right now I have absolutely nowhere else to go.

I'm feeling as guilty as hell for feeling this way too. I mean I could handle taking care of her full-time but if she's going to remain like this (or get worse) it'll be pretty brutal. The suddenness of it all has really caught me off-guard, as just barely two months ago she was still pretty normal and functional but now she's like an infant and honestly it's jarring. I didn't hesitate to move in after my sister died as I felt it was my duty to her and plus I'd have a decent place to live and work and now in the span of one month it's all falling apart. And I have no idea what happened, either, as she hasn't been given a diagnosis that at least establishes why it all went so south so quickly.
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dmanbro, this does sound like pretty serious and selective dementia. I have heard about symptoms where skills, e.g. knowing how to use a cup or spoon, is lost. I still suspect that there has been some damage done in her brain, such as happens with a stroke. She doesn't realize that she can do things.

I am so worried about you and the situation. You do not have to sell the house to pay for her care if you are living there. You can apply for Medicaid and the home will not be counted as an asset until after your mother dies. Don't worry about that if your mother needs to go in a nursing facility. This may be more than you can personally handle. Huge and big hugs.
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I did neglect to mention that you will have to pay all the upkeep on the home if your mother is on Medicaid. That includes any taxes (if they are owed) and insurance. But at least you will not be without a home and you'll be close to your mother.
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D, there are two things you need to do, I think. One is get mom to a neurologist who can do an evaluation beyond the "tell me what day it is and count backwards by 7s. The other is to get her qualified for Medicaid. From what you're describing, she's not going to be able to return home without 24/7 care. She's going to need to be in either a NH or Enhanced Assisted Living situation.
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I found out for myself after an injury, if you don't get that part of the body moving [hands, arms, shoulders, legs, feet, etc] the muscles will start breaking down within a couple of weeks. I broke a shoulder and now I face months of rehab to try to bring my arm back as close to normal.

Sounds like your Mom is running into that same problem.... by not using her arms to do things for herself, now those muscles fatigue trying to even lift the arms so she can eat, or brush her teeth or even comb her hair. Even reaching for something will feel awkward so she will spill things.

Is your Mom in any type of continuing pain? That will exhaust a person, too, and create a brain fog. How well I know.

You mentioned wanting to be your Mom's full time Caregiver.... really?... have you thought this completely though? You will be doing the work of 3 shifts of Caregivers, 168 hours per week with no breaks at all. Are you ready to bathe your Mom, help her to the bathroom numerous times, or if she needs Depends to change her?

If not, you and Mom will need to figure out a way to hire at least a 1st shift and 2nd shift Caregiver. You could do the night shift, but be ready for limited sleep.
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Thanks much for the very helpful replies. I genuinely thought she'd bounce back a little but right now I just don't see it happening. The physical end of her situation is troubling but the mental side of it is much worse. Although I made promises to her about this I just can't see how I'll be able to manage it on a daily basis.
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