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Isn't it strange that with all the advances in medical science no effort seems to be put into thinking about those who care for their parents (or anyone for that matter) at home.

I want a rolling frame for Mum that is narrow so she can get it through the door without scraping the bloody paint every flaming time. Oh you heard me she says - like that noise is something I could miss.....they don't make one according to my OT - I will be checking that - I don't believe them ever.

Those oxygen condensers make more noise than my condensing tumble drier the lady in the hospital bed next to mum had one - it would drive me crazy

However you can get quiet ones I have no idea what you use but try this site:
soundoxygen/is-your-oxygen-concentrator-too-loud-or-too-heavy/
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Jude I never did find a rollator that was just right. The narrow ones are less stable and can be harder to steer straight; there's also a three-wheeler which I thought was going to fit the bill but mother found having the wheel in front of her off-putting - obviously she couldn't have bumped her shin on it if she'd tried, but it 'felt in the way.' I wasted quite a lot of breath and ink, too, trying to make some pretty dense design engineers understand that we needed a brake like a dead man's handle, or like the ones they have on airport trolleys, that you have to squeeze to get going instead of squeeze to stop. Anyone familiar with dementia will understand that training your old dog in a new braking system is not straightforward, and if the thing rolls away with her on an off day you're in trouble. One person said she'd propose it. I'm still watching that space.

Air beds are noisy, too; and it's the constant type of racket that gives you a low-grade permanent headache. Ear plugs, Susan???
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Headphones, CM. :-)

On really, really bad days, it's headphones.
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I still sometimes hear in my mind the IV machine that had a 3 tone sound over and over again from when Mom was in the hospital last Sept. It is maddening...each machine could have it's own track on the soundtrack of caregiving.....I wish they would come up with quieter machinery and things that fit into someone's home. Sometimes I think it is a plot to get you to put your loved one into a home...they will make it as challenging on the caregiver as possible....
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However you can get quiet ones I have no idea what you use but try this site:
soundoxygen/is-your-oxygen-concentrator-too-loud-or-too-heavy/
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When my father was in ICU once, one of the nurses said there was a phenomenon described something like "ICU (psychosis)???" I can't remember the exact term she used, but it was the cumulative effect of all the monitors and other hospital noises. And it was beginning to get on my nerves.

Sometimes reading helps me distance myself from the noise, but I also keep a pair of the small ear plugs given to patients pre-MRI scan. Now I bring my big ear protectors that I use when I mow the lawn.
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Ooh ooh ooh I have the perfect response to those annoying phone calls. A dear neighbour has been absolutely pestered by them - in the UK most of them come from india and they do drive you up the wall. What you think might be important turns out to be yet another sales call and they do get pissy if you are rude. I was next door swapping a key with the neighbour when her phone rang. All I heard was this:

No no you need Tone I will get him for you and she then put her/himon hold and walked away. I said to her who the hell's Tone? She grinned broadly and said that's what she is hearing now one long beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep Oddly enough we watched the phone ...it went dead after about 5 seconds which is a long time to hear that tone!
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Jude, one of my favorite tricks used to be the whistle. I'd keep one of those jarringly loud, shrill emergency whistles next to the phone - and when a telemarketer would call, I'd just blow it as loud as possible directly into the phone. (This was in the days before caller ID and call blocking. Now I have a Panasonic phone that has a 250-number blocking capacity. I am rapidly filling it up.)
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Susan I so wish I could do the block thing but my daughter rings from a blocked number so I dont know whether iit is her calling or a bloody marketer. And I wouldnt block international ones in case you all call me!!!! xxxx grins
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I've heard of people who use a whistle or other cute tricks on telemarketers, but I always think of the people who have to work those crappy jobs to take home a pay-cheque. True, some of them are obvious scammers (had any calls from microsoft lately LOL) but many are just legitimate companies trying to flog their wares. If I we could figure out a way to blow a whistle in the CEO's ear maybe that would have more effect.
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I'm glad to hear that you go out and scream your head off! You have to have a release and if screaming helps, do it! I was raised in a home where you couldn't say no, couldnt argue, had to tiptoe and whisper when Dad was asleep (he was drunk), couldn't talk about your feelings or your hopes. Today I'm still holding it in, (I'm 78). As a result I have GERD, hives, insomnia and panic attacks...and I'm still trying to figure out to Get the help for my 91 year old bi-polar sister the care she needs! Keep screaming!!
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As many of you will know we are in the processing of moving to a more suitable property. She wanted a separate bedroom tick, separate bathroom attached to the ouunge tick, all on one floor, tick, garden, tick, near the shop ... tick. We are about a week away from exchanging contracts and she now says she doesn't want to move.

This of course is only a minor scream . To date we have had one sale fall through and 3 purchases fall through. I finally find exactly what she wants and she says I won't be able to see the kids go to school.

I have to change doctor, I won't know where anything is, I want the biggest room why can't you have the smallest one (Because you wanted two rooms Mum and I will only have one?????? and that will be the dining/lounge/kitchen so its not suitable for you. Oh and the final reason? I am not going into respite when we move I can help.

OK ITS NOT A SMALL SCREAM - you should be able to hear it across the bloody pond.

PS we are still moving
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She can help! Aaaaaarrrrrgggghhhhhh!!!! Oh God, yes - "shall I carry the boxes out to the car?" - which I would have laughed off better if, bugger me, she hadn't actually tried to!!!!

Deep breaths. Hope it goes ahead this time - nod, smile and meanwhile be a tyrant for the interim and have no shame. This is a military operation, she can have her war crimes trial once you're settled in.
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OMG and won't she just. I am building myself up for the blow out. Her last words to me a couple of minutes ago were if I die you won't be able to sell it and move....OH YES I WILL ...but I didn't go there!
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Oh Jude...you have so many screaming points with your dear Mum....I feel for you. Every day is a new adventure for you, isn't it? I hope the move goes well, if you still end up moving and don't go stark raving mad first.

My screaming point now is with the NH. It seems every week I find out something new that they're *not* doing - that I thought they were. They changed her Zoloft dosage (lower), which is great and seems to have improved her a bit (not sleeping 24/7 now), but no one told me it was changed or why - and when we first got her into the NH, they were calling me with every little detail, which I encouraged and told them I appreciated. Now I have to ASK for a report on what's going on with her. And I had kind of a shock the other day when I found out they don't even bother to check pulse, heart rate or lung sounds in someone that's in long-term care (in other words, on Medicaid) - they do it daily with someone who's on Medicare - but once they start Medicaid, that stops. Why??

We're having a care conference in a week or so - I'm going to bring these things up. Mom has congestive heart failure. They are monitoring her weight to watch for flluid increase, but a mild case of pneumonia or something like that could be detected by listening to her lungs, and her blood pressure and heart rate should be checked every day, the way I see it. She also has AFib and a pacemaker - if she goes into AFib, she shows no signs of it - I watched her go from 70 to 125 heart rate in the hospital and sit there like nothing was wrong. The nurse was flabbergasted that she wasn't even lightheaded or short of breath.
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Have you contacted Medicaid to see why that would be the case or asked the NH the question IN WRITING. I suspect they think if there is no money no one will bother....WRONG!

And yes Susan these last few months have been a different roller coaster every darned day. Some day dreadful some not so good and some ok ish. What I do know is the stress increased by this move is seriously affecting her but the move is essential for me to manage her physically and the effect of not being able to manage her is a move to a care home which she doesn't want. not good either way
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OhJude, how exasperating! I hear it over the waves of the Atlantic Ocean, lol!
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OhJude, they say that the stress of moving is equivalent thereabouts to the stress of death of a loved one. You are certainly between a rock and a hard place. The unknowns and unforeseen events that change moving plans are so stressful.
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My children passed an unnerving comment yesterday because you see I am not stressed enough obviously (either that or they are trying to kill me off too!!!)

The said what are you going to do if she dies on the morning that the contracts are exchanged (exchange occurs at midday here in UK). I said I am going out and not coming back until half past 12

Then my son said he thinks that Mum has one final straw up her sleeve for me to move us both into the new home unpack and organise everything and then she will die because she can see I am settled.

Oh deep joy - I don't fancy either option but they aren't the only ones worrying about this
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Jude, I think the only way to get through the nightmare of moving, full stop, is to pretend you are a robot and have nothing emotional invested in any outcome whatever it may be.

Besides, nah, she's not going to die for ages yet. God forbid anyway of course, but plus why would she waste this brilliant opportunity to complain every day about how much she misses the old place..???
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Take a deep breathe Jude, and reread what countrymouse just said. How can we or they or anyone complain if we re not around to do so!!!!!! Wonderful answer!
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Susan; with regard to bp, temp and weight monitoring, that ALL has to be ordered by the doctor. I too, thought that was done as a matter of course, but it's not. Talk to the DON at the meeting, or beforehand.

And I think it's not Medicare vs Medicaid, it's "skilled" vs "long term custodial care". My mom is private pay in a nh, in long term care and they dropped that monitoring when Medicare stopped and private pay (much higher rate) kicked in. So it's not the money, it's the care level.
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Jude, my hat is off to you, moving with your mom. It's a gargantuan enterprise on a good day. With a dementia patient, too much to bear. Good luck!!!
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Today is one of those "I don't think I can take it anymore" days! I, like a robot, go thru the usual tasks, fix breakfast, fix pills, do dishes, do laundry, listen to endless stories about the TV shows he watches (he seems to imagine he is one of the characters). I have a pretty large family, and they are all aware of the situation, but I have not seen any of them since Christmas. I am just sad.
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Unfortunately, most everything makes me yell because my mother won't do anything till after I have told her many times and I start to yell. I hate having to raise my voice because that in itself makes me angry. So, basically I am angry any time I am around her. I've been doing this for 7 years...
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I moved here after spending my whole adult life on the west coast so that she could stay in her home. Living in my childhood home is strange, but her dementia short term memory is the most difficult thing. If she doesn't do what I tell her immediately she forgets. And being that she is passive aggressive, that is almost every single time. Which means, unless I raise my voice, nothing ever happens. However, when my sister visits, it's uncanny how she is able to respond without any yelling on my part. She behaves for "company" but not for the person who has been taking care of her for 7 years.
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ohJude, one day while I was telling my mother to eat her breakfast that I had brought out to the patio for her...so that she could enjoy the beautiful summer day...I had to yell particularly loudly because she had left her hearing aids out for my bird to chew on (yes, hundreds of $ damage), plus she just won't do anything until you tell her 5 times minimum....well, my neighbor comes stomping over threatening to call the police because of elder abuse and wouldn't go away. He stuck his mother in a NH and visited once a month and he had the nerve to accuse me, when I was just trying to do something good for her. No one ever understands, they just make judgements. Even my mother said that he should just mind his own business.
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Oh the yelling. Even saying something pleasant in an overly loud voice makes you sound like a harpy, then having to repeat it two or three times makes you feel like one!
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Isn't that strange. Saying something louder and louder makes me feel angry even when I'm not. I bet it also raises the blood pressure.
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chrischan, That nosy neighbor makes me mad. Tell him she is hard of hearing and to butt out! No one that doesn't care give for someone can possibly know how hard this is for us, and one thing that makes me want to scream is advice from people that don't understand there is no easy way to do this job.
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