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Local branch magazine

My wife, who edits the local branch newsletter, has asked me to write a short article on being a carer…or something like that. I was wondering, if anyone had any thing that they think I should definately put in. I was thinking of just making it a simple account of the possible emotional and physical challenges carers might have to go through. include some information about the help available to carers. that sort of thing with some kind of positive message at the end. This is just a quick post to see if anyone, (carer or not) had any thoughts or opinions for me to possibly include!! Thanks

Hi, there is one thing I have recently got into, which I strongly believe could be of great help to other carers. This is using DPs…Direct Payments. Hubby has been my sole carer for 12 years and done an wonderful job. As he has quite bad rheumatoid arthritis, it was obvious he needed some help in looking after me. It took me 3 yrs to convince him that it would be a good idea. I applied, got 8 hours a week and now he has some me time. Great stuff this DPs!!! luv Pollx

Hi this is the first time I have ever posed anything in my life but wanted to see if I was the only one. My mum has had ms since I was 5 years old since she was 24 she’s now 46 and end stage ms, she has been in a nursing home since she went against medical advise and had my youngest brother Frank 8 years ago she made it until he was 1 and she was bedridden 7 years she has done in care homes ice watched her pull through many peninoma and sepsis I’ve said my good byes by doctors orders adlest 7 times at her bedside she continues to iypl through she is now back at the nursing home doctors orders no more hospital admissions no more anti biotics Available. She is peg fed and completely disabled. She has no qualitlity of life atal she hasnt.got the capacity to have a convocation she is also on patches to control the saliva. I spend every day with my mum or eats me inside the sadness is unbearable U pray for her to pass do you think that’s selfish my life is in complete limbo she has exceeded all doctors expectations why is she hanging on suffering so high she has gone 5 months no infection since hospital consultant ruled no icu no 're addnisson no antibiotics and asked family to make a best interest dession which we agreed … gabe I made the wrong decision? I’m asking also how you get out of.bed in the morning how you continue with life how you don’t feel like you are going completely insane like it’s not real. Everyoune else carries on as normal and I can’t it controlls my whole life since a child I need it to stop for her for me for my kids. I’m all for fighting when there’s a fight to be had if you could bring her back to me if fight but to hang in the balance for so long is cruel Please can anyone tell me there in the same boat I don’t want to seem like a horrible person. My mum is my life the guilt eats away at me x

jade

please don’t feel guilty.

there is nothing you can do for your mum.

there are so many people out there with a loved one going through hell with ms, cancer etc.

i take it that the doctors have put a DNR notice on her records (Do Not Recussitate).

my best friend was dying with cancer and i whispered to her that it was ok for her to go when she felt ready.

you see her every day, maybe do an hour less, no guilt!

focus on your kids.

take care of yourself love

carole x

Aw Jade

No one would ever judge you for the decisions you’ve made. It sounds like it’s no life at all for your poor mum, and equally, it’s not a good life for you and your own family.

What a terrible situation. You are really doing all you possibly can, and more. As Carole said, maybe it’s time for you to spend a bit less time at her bedside and focus more on your children.

In no way should you ever feel that you’re being selfish. In your mum’s place, I would not want to be living this kind of non-life. I’m not anywhere near that level of disability (yet, hopefully never), but I already have an Advance Decision which makes it clear that if I am ever in that position, I would want the same DNR order.

You have my complete sympathy for the situation you are in. For all the same reasons you have, I truly hope her suffering is over soon.

Sue

Hey sue and Carole I’m sorry I have written 2 very long replies and for some reason I can’t post hopefully a shorter one will post I judt wanted to say thankyou for your kind words in my hour of need xx

Brilliant it posted!! I see if my origanl post will now post I feel so helpless my mother has been put on end of life by the hospital so all Dnr and advanced care plan have had to be sorted out via hospital consultants icu you see my mum never had any of her wishes put into writing which has caused alot of stress suffering and upset so I defiantly agree with putting things into writing just incase but I’m sure you will never need it. I know I need to step back a little tbh I go sometimes twice a day to get nursing home the last time she was admitted and all of her paper work was sorted wad 5 months ago but prior to this she would only make 12 weeks and bang another infection one after the other so I just wanted to make sure I see her everyday I don’t want her to be alone when she dies. I keep saying few more weeks keep going judt incase but it has turned into months which then the clock seems it has ticked so much it will be soon but honestly I don’t no she has completely gone past anything I have ever read she’s so stong her suffering is so high I’m guessing she’s younge and her heart is so strong. Nothing she says makes any sence apart from I love you to … I really am finding it difficult I can’t grieve she’s still here but I feel as if I watch a part die every single day. If there is anything I can help anyone with I’d be happy to I’ve been doing this since I was 5 so we have been thro it all Love jade

Jade - you sound like literally the most amazing person ever. My heart goes out to you. I have no advice whatsoever, being a ‘new’ carer myself - I should be learning from you! - but please just take care of you and be good to yourself. x.

Jade, I feel for you and do not feel guilty in the slightest. My mom died last year (not MS related). she was 90 and towards the end she said, i just want to go…

Like your mom, she’d fought infections and then out of the blue, she simply got worse and passed. One thing I would advise, because it sounds like the end is near, is has someone got Power of Attorney? It makes dealing with her affairs a lot easier.

I would step back. you don’t need to go twice a day, and you yourself need some space and time. you are not just your moms carer. Is there other family? any support, like a local church or something?