taking responsibilty to get me where I want to be

Kitten868

Garlic and onions!? I don't think I could cope without those! What about organic garlic and onion? See if that is better for you. Raw onions give me a funny throat but I can't stop.

Super great about a new person who actually knows what they're doing! I hope it provides the support your team has been needing.

Sorry your mum is tackling stuff that I wouldn't even try. Acrobatics to get out of bed and a bushtucka trail to have a wash. Fingers crossed for a more peaceful night tonight xxx

efes_shareholder

Kitten868 said:

Garlic and onions!? I don't think I could cope without those! What about organic garlic and onion? See if that is better for you. Raw onions give me a funny throat but I can't stop.

Super great about a new person who actually knows what they're doing! I hope it provides the support your team has been needing.

Sorry your mum is tackling stuff that I wouldn't even try. Acrobatics to get out of bed and a bushtucka trail to have a wash. Fingers crossed for a more peaceful night tonight xxx

I know right , aren’t garlic and onions pretty much the staple food in all good home cooked recipes 
havent touched either since I started the new eating plan other then accidentally so I’m pretty sure it’s what caused my pain onset
hopefully another day or so it passes.

I’ve had to help the carer each time today to get mum to her feet , so how on earth she even considered trying to wash her own air and off sorts she succeeded I will never know ! 

Pretty sure she adjusted the bed herself trying to make it easier to get back in to rather then jumped out of it mid air !! 

efes_shareholder

To add I’m currently watching the last episode of Anne even though nm and I binge watched it the other night 
hillsborough happened when I was a teenager following my own team home and away and standing on the terraces so it resonates with me 

I’m looking at how they portray Anne who died a few days after the memorial and you know what , my mum looks 1000 times worse then anyone they show you on tv or in adverts for cancer.
she probably at 5’7 weighs all of 7 stone when she was over 20 and probably around 14 this time a year ago , she can’t walk with a stick , sometimes she can’t walk with a frame and she literally moves her feet a cm at a time when the feet co operate that is ……..the nurses said to me she isn’t classed as end of life but there’s very little life left , a glass or cup is too heavy to hold so I’ve ordered some adult beakers today so if she falls asleep tea in hand or misses the table it’s makes the after math easier.
I wonder how much further she has to decline and if she does what changes ? 

Today although work has been quiet my day has been full , more with mums needs then my job and that’s with carers and my sister coming in , 
I’m questioning our ability to keep her safe , I don’t want her in a care home as her medical needs are quite complex and she likes her carers that come in , it’s clear they love her as they move their own calls to come in as early as they can and take the weight off my day , I doubt she will be considered for a hospice when the nurses don’t consider her a priority for night sits.
I don’t know the answer 
I never ever expected this situation to last 11 months , it’s excatly that from diagnosis today , 5.2.21
we we’re told weeks and as grateful as I am , im tired and I’m worn out and I’m not sure When it takes me and the carers to move her this is my role from now 

Verbatim

Have just caught up and I'm so sorry that your situation is so difficult. You are an amazing woman who is juggling so many balls at the moment and you're doing it so so well. I hope the night sits continue so that at least you get a good night's sleep when they're there.

efes_shareholder

Verbatim said:

Have just caught up and I'm so sorry that your situation is so difficult. You are an amazing woman who is juggling so many balls at the moment and you're doing it so so well. I hope the night sits continue so that at least you get a good night's sleep when they're there.

Thanks , after being up since 4am this morning as I actually heard mum wake up for the toilet I am looking at the phone longing it to ring with the offer of a night sit 

enthusiasticsaver

I am amazed she is not classified as end of life given her weight (so presumably not eating much), lack of mobility and severe incontinence issues.  The night sits sound like they are essential to your sanity and own sleep.  This must be incredibly hard and although she obviously has outlived the prediction given by the doctors it is at a massive cost to her own dignity presumably and yours and and a lesser extent your sisters exhaustion.  

Kitten868

11 months! Wow. And 20 stone down to 7. The only time I saw frail people accurately depicted was in Ethel and Ernest. Its shocking how people transform. I'm sorry they have withdrawn the help. Its so unfair. This week was always going to be tough with going back to work and your mum not doing well. You're doing it though. That's all you can do. Please please know how amazing you are. I'm falling apart just juggling going back to work and school. I don't know how you cope. Lots of love xxx

Buffythedebtslayer

Just so difficult. 

I hope you get a night sit soon Efes. 

XX

efes_shareholder

enthusiasticsaver said:

I am amazed she is not classified as end of life given her weight (so presumably not eating much), lack of mobility and severe incontinence issues.  The night sits sound like they are essential to your sanity and own sleep.  This must be incredibly hard and although she obviously has outlived the prediction given by the doctors it is at a massive cost to her own dignity presumably and yours and and a lesser extent your sisters exhaustion.  

Me too , she is classed as just pallative care but unless we are at the stage when the body is starting to shut down , its not technically classed as end of life.

efes_shareholder

Kitten868 said:

11 months! Wow. And 20 stone down to 7. The only time I saw frail people accurately depicted was in Ethel and Ernest. Its shocking how people transform. I'm sorry they have withdrawn the help. Its so unfair. This week was always going to be tough with going back to work and your mum not doing well. You're doing it though. That's all you can do. Please please know how amazing you are. I'm falling apart just juggling going back to work and school. I don't know how you cope. Lots of love xxx

I dont know how i cope , maybe we gave too much care too soon hence now the burn out but having spoken to my sister and recalling how mum was using a wheel chair in march im not sure thats the case.