It's what I would refer to as a labour of love, you give up almost all of you because it is the right thing to do for the person you love, no matter who they become through it. It's heartbreaking though that not more people in your family can make an effort, even once a week to give you some time to recharge.
I saw what you said about them reverting back to 5 year old's my gran is 96 she doesn't have dementia but her memory is very similar to what you explained and she does have some tantrums
She has always been very independent so we managed to find her a facility in the Eastern Cape because she didn't want to live with family anymore. Last week the home called me to let me know that she refuses to wear any of the clothes I bought her because they are not hers and then told them they all assholes! I spent Saturday with her prancing her around to show off the clothes hoping the memory will stick somehow... I've only had a small taste of what you are going through and can really empathize.
I like that you share your experiences, the truth about what life can eventually become for our kids is hopefully going to get some people to put some proper preparation in place, so their kids don't have to go through what you are.
Thanks for the PM. Yeah eastern cape won't work, she would need to go to JHB or the surrounding area as to be close to most family being there.
Do have a place in mind in nigel, which is just north of 10k a month that is subsidized which isn't bad considering it can go up to 30K+ a month at some places.
She isn't ready for an old age home yet.What I am really hoping for is as she declines mentally she should be a lot easier to handle and manage.
Lol she fell out of bed this morning at 5 am and started calling out my name. She said the "slid" out of bed, there was no fighting or aggression. Somehow she crawled underneath the bed. I was more HOW TF did you manage to get underneath the bed.
In the beginning I used to put a mattress blanket and pillows so if she decides to "Slide" out of bed there is a mattress to break her "slide". Will see how it goes and start doing it again if there is a repeat.
We got her a hospital bed a few months back, it is higher and you can manually raise and lower the bed. It was back breaking changing nappies or picking her up or moving her ect. It isn't like I am not setup to take care of her, got a wheelchair in july.
Gloves, liners and all the other stuff you could imagine needed.
I can handle all of that it isn't an issue, dealing with the person it self that is another story altogether, most days are pretty average, it is the days where she can have maniac episodes that makes me want to murder her in her sleep.
But yeah she is in a pleasant mood again, thank god for that, should last a good 2 - 3 days before the next episode, which can last up to 4 days.......usually knackered after that, a lot of fighting and shouting.
I am in a rural area there isn't anywhere I can go to get respite, personally need to figure out a way to get away from the situation, put her to bed, leave her with snacks, and drinks and go for a walk or even just sit outside and have a coffee and ignore her.
Ignoring part is FCKING hard, as she pleads and begs and plays on people's emotions to get her way, need to figure out how to deal with that, in a manner she understands, not right now you have to wait.
I work from home, I am a freelance 3D artist, it is the type of work that requires concentration and no interruptions, where a project normally takes 3 months to do the last project took nearly 7 to do because of this kak.
it is the reason why I have setup a hourly routine, allows me to get work done and the 15-20 minute breaks in between to help her allows me to be focused I get what I need and she gets to move about.
The other problem is she wants to be in her wheelchair most of the time, unfortunately that isn't possible as you need to supervise them when mobile, as they can get up to all sorts of kak when mobile. So twice a day when weather permits I take her outside, around 9am and after 4pm in the afternoon in summer when there is shade and cooler outside. 3 times in winter, morning, midday and afternoon. She usually has lunch outside in the winter sun as it is nice and pleasant.
So yeah you figure out things along the way to accommodate.
From my side I really need to find away to redirect my anger as I do sometimes end up shouting out of pure frustration, which doesn't do anyone any good, I am by no means perfect, I screw up as well letting it get to me............ You just get to a point where your patience gets put to the test and all hell breaks lose enough to make a sailor cower in a corner. That is when I tell her FCk off you are on your own till have have cooled down and ready to deal with you again.
lol so yeah, it ain't sun shine and roses.......I do a lot wrong as well.....But I manage.....
