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?
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!
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.
soundoxygen/is-your-oxygen-concentrator-too-loud-or-too-heavy/
On really, really bad days, it's headphones.
Air beds are noisy, too; and it's the constant type of racket that gives you a low-grade permanent headache. Ear plugs, Susan???
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/
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!
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!
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
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!
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.
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!
Someone needs to do a story on dementia and rugs. I wondered if your mother also rearranges furniture.
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!