What is your screaming point?

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What is your screaming point?

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My mother tries my patience on a good day but I usually manage to stay calm....failing that I go to my car or garage and scream
Today is a scream day. Firstly she doesnt want me to go out this afternoon for something I have had planned for 6 months. I will be out 90 minutes and providing she goes to the toilet before I go and they lays on the bed no harm can come to her.

So 10 minutes after me reminding her we were having lunch at lunchtime she decided to soil herself royally, followed by the words you cant go out if I am like this all day. Now if she hadnt added those words they would have come to me all on my own but BECAUSE she added them I started to wonder.

Then she said she felt sick and didnt want any lunch - but when I came in very quietly (OK yes I was spying) there she is stuffing her face with biscuits and cake which I leave by her side. She has been awake just over 4 hours and I have been in to speak to her chat wash clean her soiling clean the room 14 times which I think is pushing your luck really.

So what has she just done? Asked for coffee so I made her a latte just as she likes it and she now wants sugar in it - has NEVER taken sugar in anything. Then there was too much coffee in the cup - its dispensed mum it is always that amount.....well its too much Ive always thought so

I could see her fidgeting so I said lets get you across to the commode mum. I dont need to go there ...well I think you do... wasnt gonna happen. I came back in 5 minutes later and despite her reluctance I got her up and here we go again she wet and soiled herself in front of me. You wont be able to go out this afternoon you'll have to ring and cancel.

As I count 1 to 10 and find it needs to be 100000000000 I count to now.
Hmmmm OK lets try my theory. I went out of the room and 'made' a phone call. I know she could hear what I was saying because I was stood right by the door and I spoke louder than usual. When I finished my call, I waited a while then went back in. And what did she say. I feel much better now you could have gone after all

I havent told her yet but I havent cancelled I spoke to the phone not to anyone the other end so at 5pm I AM GOING OUT SCREEEEEEEEEEEEEEEEEEEAAAAAAAAAAAAAAAM

Whats your screaming point?

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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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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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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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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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Headphones, CM. :-)

On really, really bad days, it's headphones.

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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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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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My new screaming point: the constant, unceasing noise from Mom's oxygen condenser. WsssshhhhhhKA-THUDwsshhhhhhKA-THUDwshhhhhhhhh

When I turn it off to change the tubing once a week, it's like I've gone stone deaf all of a sudden. And it makes the living room incredibly hot. It's like walking into the 7th level of h*ll some days.

Some nights, I am ever, ever so grateful to be able to retreat to my bedroom - where I can still hear the O2 running, but it's not nearly so loud, and I can open my bedroom window and not worry about freezing Mom out because of her blood thinner making her feel cold all the time. I don't even care that I sleep in what is now the laundry room. It's my only escape from the noise!

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She's bloody doing it as we speak V 10:53 at night and shes sorting screws ffs

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Jude - love the story! Maybe you can get her to do it again tomorrow.

Sometimes, as noted in private messages, we really are hitting our head on the wall - but there are times when that feels kind of good for some strange reason. It may be therapeutic to either sharpen or counter the dull ache of something else going on - better to laugh or cry than feel utterly lost and drifting!

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The only thing that will help you understand what the triggers are is geolocating although you may all call it something different in the USA.

However I have to say that everything I know about Parkinsons would seem to indicate that not so ver much actually triggers it - this site might help you : https://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs94_tremorandparkinsons_0.pdf

If you have a problem that you believe is started by a trigger then geolocating might help

You need to have a diagram of the rooms first and foremost and then when something kicks off you need to put an x on the place she is AT THE POINT OF STARTING . If for example it always happens when she is on the loo (mum is much worse on the toilet an if anything is going to go wrong it is usually toilet associated) tou have the makings of a pattern then you start to whittle down the options.

If there isnt a location pattern you can still try to drill down as long as you recognise there may be no trigger just a symptom - not all problems have triggers

To drill down you need to write down who was there, what happened, what was on tv, what was the conversation etc. its not easy to do, its time consuming but it can result in triggers being forthcoming for some people but only if there are similarities emerging.

Example there is a war programme on person starts screaming and trembling
Bonfire night person starts screaming and trembling

Aha you think something to do with fire/death/destruction

Eating in the dining room and someone drops a plate in the kitchen and it breaks person starts screaming and trembling
Out for a walk past the sports ground person starts screaming and trembling
Now you start to see that the only thing that links all these is loud noises and it is perhaps those that are the triggers.

At this point you limit access to noise and see if that has a positive effect

I hope that made sense

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Well, I wanted to just try to be witty again and comment on how therapeutic it can be to rearrange a room, but she actually sounds agitated. And an interim visit on the tremor sounds appropriate. If it is just Parkinson's progressing and changing over time as it usually and unfortunately does, medication changes could help a great deal. Usually it is not really 'triggered" type of condition like migraine. On the other hand, maybe she's got something else like a dystonia or serotonin syndrome going on - the "shaking so hard she turns red" is not quite how most people describe the typical Parkinson resting tremor.

You might want to consider checking on clinicaltrials.gov to see if there is anything she'd qualify for - direct benefit is not promised with becoming a subject, but it could be interesting and treatment and symptom logs could be a far better thing to obsess over. Just a thought!

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My mom has always wanted to rearrange things, but it is much worse now. She spends all day rearranging the items in her bedroom...and I mean ALL DAY! We couldn't find her phone the other day, and it was off the hook (cordless but you know what I mean) and it took us an hour to find it. It was in the cushion of her recliner. We have found it under the bed, under the chair, in the fridge, etc.

Her tremoring is also getting worse. She told me this morning she wants to go back to the doctor and I told her I would make an appointment to see her neurologist (who we just saw in late January) but he is 4 hours away. She then said she wanted to see her regular doctor and we just saw him Monday. I told her "You have Parkinson's you are going to shake". Wish we knew what her triggers were other than overdoing (she won't slow down) and getting upset. She is already on so many medications for anxiety and tremoring. I don't want her to be on "Planet Mimi, Population 1" or a complete wackadoodle, but I also don't like seeing her shaking so hard she turns red.

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OK brilliant idea really bad result. To stop mum driving me nuts with all her sorting a local hardware store owner brought me a huge bag of screws for mum to sort by size and then into tens. She was having a whale of a time this morning I didn't here a peep. I peeked in a few times and there she was using the measuring thingy he gave her (mini ruler in my opinion) and hse had virtually sorted the lot. I was impressed seriously impressed. I went in and said how you doing mum.

Why do we need all these screws - erm we dont mum they are for the nice man at the hardware store .

Are they why have we got them

You were sorting them for him??? remember??

Ah yes well I have done that and before I could stop her she scooped the lot back into the bag!

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Thanks jessiebelle I'll check it out!

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I just checked. The CPAP device fits on the end of the nose -- very small. It is cordless and hoseless. It will be available next month from Airing. I wonder how well it will work.

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tired, have you seen the new tubeless cpap devices? They look a lot more comfortable than the ones commonly used now. I don't know how well they would work with someone with dementia, since they also look easy to yank off the face.

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JB Globe My mum rearranges everything. Did you ever play that game where 20 items were put on a tray then you had a minute to look at them . Then you closed your eyes and 2 items were taken away or added and you had to try and remember which 2 they were. Let me tell you dementia or no dementia mum would win this hands down every time. She knows exactly wha goes on that table and precisely where it goes on the table and how much of it goes on the table. Sometimes its like living with rain main.

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Globetrotter, I thought I was the only one with carpet problems. I bought two big beautiful rugs for my mother because she said the floor was too cold. The rugs cover almost the entire rooms and are thick, lush, expensive pieces. She keeps the one in the bedroom covered with blankets -- a real trip hazard that I can't get her to stop doing. She first of all said that wind was coming up through the cracks in the floor. Then she said the floor was still too cold. Now she says she likes the feel of the blankets under her feet. Who knows why the blankets are on the rug in her bedroom? I sure don't. I don't think she does, either, but she won't stop doing it. If anyone were to come in, they would think I was terrible to leave the bedroom like that. They wouldn't know how hard I tried.

Someone needs to do a story on dementia and rugs. I wondered if your mother also rearranges furniture.

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I can so relate, Jude! Mom's repetitive questioning revolves around what day it is, am I going to work/church/grocery shopping, is there anyone coming to see me today, is the door locked, and is dad dead. On the rear occasions we do go out, she goes through her hand bag every couple of minutes worrying if she has her keys or cards or money - even in the taxi! My sister says in jest that I should just record the answers on tape and play it back to her. Mom is quick to pick up any irritation in my voice, and then I feel guilty. Long ago and far away I used to think (and others did, too) that I was a patient person. How we change!

My latest screaming point is mom's reaction to the carpet that my siblings and I bought her for her birthday. She cannot deal well with change, so my sister emailed a picture of it while in the store and I showed it to mom, and she said yes, it's a lovely carpet. She agreed that we could buy it for her.

When my sister brought it over on Mother's Day, she complained that it was too light and would get too dirty. She wished people would stop buying her things she doesn't want. We thought after a few days she would get used to it, but no, I came home from work a couple of days later and she had the new carpet rolled up and the old one put down again. At first she agreed to put it in her room, then changed her mind. So I said I would put it in my room, but that didn't work because it was too small.

So I said I would clean the old carpet and sell the new one. When the carpet came back from the cleaners she complained it didn't look any cleaner and what a waste of money. When I came back from the groceries yesterday she had the old carpet rolled up and the new one put down. Since then she's been going on about wanting to put pieces of plastic down because it will get filthy with everyone walking over it (I don't know where all these people are coming from). So we are now playing musical carpets!

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What do we really feel when we do the same thing, answer the same question time after time after time day after day after day? I have been through my mums handbag with her 14 times since she got up. She has asked me the same question again and again. I am not sure whether I am bored, frustrated, annoyed, irritated, tired or just danged worn out but I do want to burn that bloody handbag right now

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Is dementia contagious? My brother finally answered the door when mom went over to his house. Mom was telling me about it yesterday and said she found out that he has not paid the car tags for his car because his fence is falling down. what? I ask her what the fence had to do with the car and she repeated herself and added that the 68 Dodge Dart car he has was actually made in 64 by Honda and got mad at me for not listening better. We spent the day together running errands and I was so confused from her ramblings that on my way home, I passed my own house and started pulling into someone else's driveway. Very confusing day.

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says all day she wants a particular food item. I go and get it ....only for her to (sic) say "i dont want that! I hate that!" Or "you know i dont like such and such!" - Oh yes I know that one really well but not just food .....any and everything. the sad thing is she hated people who repeated themselves when she was fit and well

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Tonite its putting the cpap on mom for the 4th time. Getting someone with dementia to wear a cpap is a real treat

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Jessiebelle...yes i think im starting to go nuts! Its so nice & peaceful in there...no angry rants from mom, demands or adventures in loopy land...but alas its only for a few brief restful moments & i must face reality again.

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My screaming point is when she repeatedly says all day she wants a particular food item. I go and get it from the store foolishly thinking that ive stopped the incessant nagging for the moment only to have her say "i dont want that! I hate that!" Or "you know i dont like such and such!"

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Hmm, tired. Now that's weird. (Said with love and smile)

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I go & sit on the floor in the dark beneith the hanging clothes in the walkin closet & eat cookies....often the only meal i have time to eat! althoug screaming in the garage sounds like an attractive alternative.

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Jude don't get cross with those lovely bank ladies - they live in Swansea, they have enough to cope with :)

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THANK YOU MELISSA!!!

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What is your screaming point?

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