Hard Things

[ysabetwordsmith]

Life is full of things which are hard or tedious or otherwise unpleasant that need doing anyhow. They help make the world go 'round, they improve skills, and they boost your sense of self-respect. But doing them still kinda sucks. It's all the more difficult to do those things when nobody appreciates it. Happily, blogging allows us to share our accomplishments and pat each other on the back.

What are some of the hard things you've done recently? What are some hard things you haven't gotten to yet, but need to do? Is there anything your online friends could do to make your hard things a little easier?

Comments

[we_are_spc]

...Um,

There's so much. o.o (And PM me please? because questions about a template and I don't wanna ask here.)

But yes, yes, I will try this. I have a counsellor, so matybe with that and her? ... Maybe.

But...I'll still miss the dialectical stuff, because that worked a bit too. The nice advantage is that the Dialectical Behavioral Therapy stuff...dovetails nicely, which I like. So score one for that.

Also...Can we add you?

It may not seem like it right now, but...yeah, you've got a multiple on your hands. xd

-Trausio~

[pronker]

Can I offer the YTube vids of Teepa Snow? They provide lots of coping strategies dealing with dementia. I wish you the best on your trip.

[mirrorofsmoke]

Yes please. Coping strategies or just advice from people who've dealt with the same are totally welcome. Thank you!

[pronker]

Today was the day I was actually able to talk with Spouse's PCP's nurse face to face. She's going to ask for a consult for a VA psychiatrist to speak with Spouse re his refusing to change his Depends often enough. 3-4 times weekly isn't working; there are about 400 Depends in VA boxes in the garage and he knows about it but still is conservative with them past the point of reason; the hand tremors are worse; last night he again flooded the dining room chair pad and his pants. The damage to the skin since first wearing them 100 percent of the time beginning November 2018 I cannot even think about. A positive step is that switching to suspenders rather than a belt means there is more time to maneuver, rather than undoing 1. belt 2. button 3. zipper before the action begins, which takes him by surprise at times. Suspenders just slip off the shoulders to free up the body for bathroom use.

That was hard to do because knowing Spouse's refusal to attend an anger management class about 20 years ago means that this psychiatrist appointment may not be kept, and it is needed. I've left 5 notes for his PCP re this problem and this is the first time there's been a face to face meeting for me; if Spouse's had any advice given to him re the problem by his PCP, he's not told me.

Thoughts

[ysabetwordsmith]

>>I did get a referral to a specialist but I've been waiting for two months and I've got another month to go.<<

I think it's evil that people's health is valued so little that the industry thinks it's fine to ignore problems for months on end. Then they wonder why people "don't want help" or self-medicate as best they can. Fuckers.

>>My brother (who lives with me) has something that is giving him progressive dementia. Which he refuses to believe exists or talk to his doctor about, in spite of the fact that he has a condition that is eating his nerve endings, so something wrong with his neurons is not a big jump.<<

Well, it's up to him until he is legally ruled a nonperson, his consent is irrelevant, and someone else makes all the decisions for him.

>> In the meantime I have to help him when he's incoherent, which is hard when some days I can't even sit in bed and read.<<

Not a good situation. It sounds like he is heading for a condition that will require expert care. You should consider your exit plan. This will be difficult if a doctor's opinion is unavailable, but you could still make a list of things that would make you kick him out or move out yourself.

>> I need to keep track of his episodes so there is something to take to his doctor but this is the kind of record keeping I've always failed at for me.<<

You could simply do your best. Some data is usually better than none. It might help to have forms to fill out so you don't have to think up from scratch what to say.

Alternatively you could try something that requires no ongoing effort from you: set up an indoor security camera. When an episode occurs, go save that segment of recording. Many systems will let you save important clips easily. This is low effort, but probably not cheap. It's also creepy on privacy grounds to run a camera at home, but people do it to kids all the time now, and there are medical reasons why it is sometimes indicated. As long as you don't let the data off your own equipment, preferably offline equipment, it's relatively secure. You can erase anything you don't need to show a doctor.

[pronker]

You are welcome!

Well ...

[ysabetwordsmith]

My observations regarding dementia, brain injury, and other reasons for cognitive offloading deal with a lot of adaptive equipment. There are many memory aids now, from online apps to household tools.

I was researching those for a friend when I spotted a day-of-the-week clock and promptly bought one because we have no set schedule, making it difficult to track days. I keep a timer on my desk so I can concentrate on writing without losing track of the oven across the house or other timed tasks.


APPS

https://www.brainline.org/article/life-changing-apps-people-brain-injury

https://www.makeuseof.com/tag/12-apps-help-forgetful-people-remember-things/

https://livingbranches.org/post-39-apps-for-dementia-caregivers-


OTHER TOOLS

https://dementia.livebetterwith.com/blogs/advice/10-useful-aids-to-help-you-live-with-memory-loss

https://www.alzstore.com/shop-alzheimers-store-s/2054.htm

https://www.flintrehab.com/2019/adaptive-equipment-for-traumatic-brain-injury/

https://caregiver.com/articles/dementia-friendly-home/

https://www.healthpropress.com/bourgeois26urmca6g/

https://www.attainmentcompany.com/memory-books


If memory of people and places is lacking, consider a memory or orientation book:
http://speechymusings.com/2013/09/24/memory-and-orientation-books/


To reduce decision stress on everyone, consider building a capsule wardrobe of adaptive clothing or similar styles found locally. Look for things that are easy to put on, durable, won't go out of fashion, and all match each other. Get rid of anything with fiddly buttons, sticky zippers, or other hassles unless it is beloved.

https://www.buckandbuck.com/shop-by-need/adaptive-clothing.html

https://ysabetwordsmith.dreamwidth.org/11972439.html


Visual schedules can help a LOT. Make them any level you need -- steps of a task, morning/evening, days of the week, days of the month, etc. I have some links gathered in notes:

https://ysabetwordsmith.dreamwidth.org/11722946.html

https://ysabetwordsmith.dreamwidth.org/11672115.html


A dayboard is another great idea. This one has a calendar and weather:
https://www.craftingcheerfully.com/diy-childrens-calendar/

Some include a clock:
https://thecarehomedesigner.com/products/orientation-boards

This one is half whiteboard, half bulletin board, so you can put anything on it:
https://www.crossroadshospice.com/hospice-palliative-care-blog/2017/august/16/orientation-board-activities-for-dementia-patients/

I had found a fantastic FAQ board but now I can't locate an image of it. Basically someone had written answers to all the questions their person kept repeating:
You are at home.
You are fine.
Everyone else is fine.
The oven is off.
The TV remote is in the left pocket of your chair.


I hope this helps.

Re: grrr

[(Anonymous)]

Roommate situation is a combo of different issues, we were raised very differently, so have different communication styles and have very different ideas of what "clean" means, and I stopped doing all the chores including theirs last week after I just couldn't deal any more. We have opposite schedules so it can be difficult to get time enough to talk out the issues that we are having.

Re: Knitting

[redsixwing]

Oh, that's a really good idea. "Never finishing everything" bugs me too, and usually it's flat wrong.

Your finished projects sound amazing. That's the sort of things that can really make someone's day better, including yours.

Re: Knitting

[ysabetwordsmith]

I have found it useful to redefine what "finished" means. I can break a huge unfinished project into sections that are finished, post a section, and feel satisfied.

In knitting, some people like flexible projects. A scarf with horizontal striping can be done whenever you decide it's long enough. An afghan made of squares can have another row added, or not.

Re: grrr

[ysabetwordsmith]

>>Roommate situation is a combo of different issues, we were raised very differently, so have different communication styles and have very different ideas of what "clean" means,<<

Yeah, that's hard. Definitions of clean can sometimes be negotiated, especially if both/all parties have different things they care more about and room to budge a bit.

>> and I stopped doing all the chores including theirs last week after I just couldn't deal any more. <<

Very sensible.

>>We have opposite schedules so it can be difficult to get time enough to talk out the issues that we are having.<<

Few problems can be solved without talking. :(

Some general resources:

https://studenthub.biola.edu/living-off-campus/roommates-102-ground-rules

https://www.realestate.com.au/advice/harmonious-share-house/

https://i.pinimg.com/600x315/f8/ec/91/f8ec9168995b8c3c80fa62447399afe8.jpg

https://www.wikihow.com/Draft-a-Roommate-Agreement

http://www.myidealplace.com/naa/resources_rm_agreement.php

https://www.thespruce.com/how-to-be-a-good-roommate-1216908

These might give folks some starting points.