I’m 23 I have been caring for my partner of nearly 5 years for nearly 4 years, 2 of which has been effectively full time since we moved in together.
In the last 12 months I lost my dream career and with it my escape, I have yet to find anything permanent.
My partner’s health has only deteriorated and she has Functional Neurological Disorder we have f*** all idea if or when it will ever get better and every medical appointment is a battle.
I am pissed and scared and alone and agghhhahahshahagag.
Please tell me there is someone here (especially near my age) who gets how I’m feeling.
Thanks for reading my rant
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Hi, although Im double your age I get what you are feeling. Its completely understandable as your whole time is based around caring, in my case my husband with Huntingtons disease. I had to give up the job I loved to provide almost 24 hour care and, although I love him so much, I get so frustrated, angry and a host of other things and feel so alone and no end in sight.
Hi Will
Sorry but I AM a lot older than you, but just wanted to say “Rant away” - it’s what many of us do on here and it can be a great help.
Have you been in touch with a local Carers’ Support Centre? Our local one has Support Groups for younger carers who meet online or in person.
Before my husband had a stroke, we were recovering our business after covid and things were looking good. I was starting to plan our retirement in two or so years and everything in the garden was rosy. Then 29th December 2022 came and our world fell apart. I had to close our business very quickly with no prospect of selling it as a going-concern, so that was a chunk of our “pension pot” out of the window. Since then Graham’s become more and more reliant on me and I have little or no social life and spend my days running around caring for him.
Resentment creeps in from time to time and when I hear of ‘friends’ bleating on about their second or third holiday of the year and being more worried about planning for Inheritance Tax it p!sses me off big time!
Our lives revolve around Graham’s medical appointments. His cognitive state is slowly deteriorating and we are currently doing frantic battle with continence issues (a full clothing change up to three times a day is not fun - for either of us). We are on first name terms with our GP, which means we laugh and joke with him, but that only goes so far with making things easier.
Although you’ll find many of us here are older than you - and I completely get why you want to talk to someone nearer your age - you’ll find a wealth of experience and knowledge, not to mention the most supportive and friendly forum I’ve ever known. There’s no judgement here, just total acceptance and warm friendship.
I hope you can find what you’re looking for, but in the meantime, we’re here to help with support.
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Thank you so much, for your reply it’s good to know I’m not alone especially as over the last 4 years my friends just see to have stopped inviting me to things so it can feel very isolating.
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Hello, i am a former carer, so feel very sorry for so many of you. Not easy situations. At long last i am back with this wonderful group. Its nearly 3 & a half years, since my hubby passed away, but i am here if anyone would like to chat. i am a good listener, & feel that communication is key. Bless you all, 18Amanda27h
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@Will1902 I am older than you too but have been caring officially since Jan 2013 but unofficially prob before this. My husband is 86 with co morbidities and is medically non compliant.
I totally agree with what @Chris_22081 has put. None of us are saints and resentment is bound to creep in. All I can suggest is you make time for YOU. Also it is very worthwhile seeing if you have a local Support for Carers. They often have a ‘befriender’ service and will try to match you up with someone - often they have been carers themselves. There may be a waiting list.
I would also say that whilst I understand you would ideally like to connect with people a similar age, we do have a lot of experience on coping with long term caring so please feel free to use us as a ‘sounding board’ whilst you hopefully work at getting support in place.
Like Chris my life revolves around my husband who is mega deaf but wont wear Hearing Aids medical appointments. My life is further complicated by the fact that I do not always know if he is really ill or just trying to control me and stop me going out. I have a small circle of local friends but I have had to compromise very much and hate feeling so controlled. I do get out for short periods usually an hour and a half but have to ‘stay local’ and leave a contact phone number so I can get back. I also make sure I do my hair and makeup each day and go and get the paper as at least it makes me speak to the dog walkers and shop staff. Do everything you can to stay a person in your own right and not ‘just’ a carer. It is very isolating and very very hard.
Oh yes… The “friends” who suddenly forget you and are so wrapped up in their busy lives they cannot find time to check in from time to time and because it’s often awkward for you to go out, they seem to think you don’t want to or don’t need to…
Then there are those who love “Caresplaining” - telling you exactly how you should do your caring role despite them not having one second of experience.
The ones who don’t visit “because it’s too tiring for Graham - you said so”… What I said was “please keep visits relatively brief and don’t get into long detailed discussions as he tires easily…” Oh yeah - that bit got forgotten when they went on and on and on…
The comment I REALLY resent “you should let Graham make decisions, not just do what YOU want to do…You smother him…” That was when he wanted us to go to a restaurant in a busy part of teh city with no parking in the area “you can drop him at the door and go find somewhere to park” (ie abandon him for 10-15 minutes…)
Friends! Who’d have 'em?
Then I get moaned at “you need a break - you should take a break” - please explain HOW? Who will look after him and will HE wat someone else doing intimate care?
Oh it’s great to have a moan isn’t it. That’s the great thing about this forum - no one judges and we can let off steam and get support from those who “just know”.
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@Will1902 rant on here, it really does you good. Having a partner with a mental health issue is going to be a battle, and also people don’t really see you are a carer. I am lucky my friends have been supportive of me, if not understanding my partner.
You must remember to look after yourself and sometimes that can make you feel selfish, but you aren’t being selfish you are being honest.
Is there a local carers group for mental health patients, I have found that helpful as they understand the issues when there is no physical disability to focus on.
Scream and shout, this is a place to get support and help
hugs
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