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?
SO many of us feel unfit, feel guilty, feel selfish, constantly doubt every single decision, grieve the fact that all we can do is all we can do. But even if we could do more than that somehow, it would not make our loved ones happy, restore a relationship either ruined by dementia or one that never was, or let them live on as we so fervently wish. We are human beings, not God, and not without human limits. You will be stronger for having withstood this, and more sure that you absolutely can and must defend yourself from false guilt and the wishful thinking that if you really loved or cared enough, you could make it all better.
And, just a few posts later, this same person admitted they were terribly depressed and anxious. Yes - a hurting soul, and who could not give herself or anyone else a chance to be human and to feel what they felt. I subscribe to the view that there is a greater courage in the one who is afraid but runs towards the disaster anyways; there is a greater devotion in the one who feels dreadful things and yet does what must be done. There is even a book called "The Secret Strength of Depression" which tried to dispel the idea that the emotions of depression signal weakness and unworthiness - that there is really a great strength in feeling those things and yet carrying on. Our emotions tell us things - important things - sometimes we need to adjust our attitudes, sure; but sometimes we need to adjust our lives and our burdens, and get help either medically or materially in creating a just a bearable life for ourselves and our families. Even the most negative emotions in the world should not be allowed to tell us that we are bad people, ever. This storm is past; there will probably be another at some point, but wiser hearts (and a little good moderation - much appreciated, BTW) should prevail.
A little boy went up to his mother and he handed her a piece of paper that he had been writing on. This is what it said:
For Cutting the grass $5.00
For cleaning my room this week $1.00
For going to the store for you $0.50
Baby-sitting my kid brother while you went shopping $0.25
Taking out the garbage $1.00
For getting a good report card $5.00
For cleaning up & raking the yard $2.00
Total Owed: $14.75
Well, his mother looked at him standing there expectantly, and you could see the memories flashing through her mind. So she picked up the pen, turned over the paper he'd written on and this is what she wrote:
- For the nine months I carried you while you were growing inside me, no charge.
- For all the nights that I’ve sat up with you, doctored and prayed for you, no charge.
-For all the trying times, and all the tears that you’ve caused through the years, there’s no charge.
-When you add it all up, the cost of my love is no charge.
-For all the nights that were filled with dread, and for the worries I knew were ahead, no charge.
-For the toys, food, clothes, and even wiping your nose, there’s no charge, son.
-And when you add it all up, the full cost of real love is no charge.
When he finished reading what his mother had written, there were great big tears in his eyes, and he looked straight up at his mother and said, “Mom, I sure do love you.” And then he took the pen and in great big letters he wrote: “ALREADY PAID.”
(original by M. Adams
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!
Someone needs to do a story on dementia and rugs. I wondered if your mother also rearranges furniture.
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!
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.
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!
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
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!
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!