Hi, my name is Lorraine and I am new to Carers Connect although not new to the caring role. I care for my husband who has a duel diagnosis of dementia and Alzheimer’s.
I am just looking for some support for myself in this role when I feel that things are tough; nobody prepares you for this role and sometimes it is a very lonely place to be
thank you
Lorraine
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@lojwilliams1607 Hi Lorraine, welcome to the forum! It’s great to have you aboard…gosh that sounds like a cruise ship welcome and I SO know we’re not that - unfortunately! 
It sounds like you’ve been caring for your husband for quite a long time. If you don’t mind me asking or sharing could you share more details, do you have support at home, carers? family? neighbours or friends who offer a hand now and again?
I totally get it, as does everyone here - it’s tough and isolating and sometimes you don’t see the outside unless its for an appointment at the hospital or GP practice…our world shrinks to well trodden paths and locations. BUT you don’t need to be lonely now you’re here
Hop over to Roll Call where there’s general chat - like neighbours, we vent, cry, shout, tell jokes…anything, everything as much or as little as you feel you want to share, OR just have a read.
Ohhh do you have pets? There are dog and cat parents here, as well as the human kind of parents
https://forum.carersuk.org/t/roll-call-march-2024/124620?u=victoria_1806
Geez and to actually introduce myself…I’m Victoria, I helped my Mum care for my Dad in 2015-17, then I took on much more after I chose to resign from work in 2017 We cared for dad who had Congestive Heart Failure, Bladder cancer, Vascular dementia, rheumatoid arthritis-which made him very unstable and unable to do much of his person toileting/showering etc. Dad passed at home Jan 2020, a few months before Dad passed, Mum was diagnosed with 2 different types of cancer, so 2020 we pivoted hard to her surgeries, chemo & radiotherapy…
I live with Mum, look after most things, and I try to help her be as independent as possible…and we giggle and have our own love-bubble. I still run around like a headless chicken…and you’ll have to excuse my high energy messages…I also have a small business and website… If I could, I’d have a slow-down button attached to me for the comfort of others
LOVELY to see you here. BIG welcome
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Welcome to the forum. I’ve been a carer for 45 years, ever since my son was brain damaged at birth. Also cared for all 4 parents, and a few other family members too, in various ways.
How old is your husband? Are you claiming disability benefits for him?
Did you know that if he’s getting PIP, AA, or DLA, he is exempt from Council Tax due to the dementia?
I ask everyone when they join the forum, too often they didn’t know. It’s one of the rare benefits that can be back dated too, Martin Lewis has met someone who reclaimed over £8,000!
Are you getting any support to help you care?
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Hi Lorraine.
I took care for my husband, Graham, who suffered a ‘mild’ stroke at New Year 2022. Since then he’s had a cascade of other medical problems. It also meant we lost our business as he couldn’t work and I had to take on the new role of Full-Time Carer - oh joy !!!
You are right - no one prepares us for a Caring role; we don’t apply for it or get special training - we just get thrown in at the deep end and it’s sink or swim time! Mostly, no one asks if we mind taking on the role - it’s so often down to the fact of LOVE! It’s only then that you find out how your ‘social life’ disappears and how “friends” seem to dwindle and fade into the background.
@Victoria_1806 's analogy of a Cruise Ship is a good one actually - except the ship’s stabilisers have been disabled so we rock about in rough seas and are often at risk of capsizing and sinking without trace. Mind you with Graham’s recent renewed continence issues I feel like I am afloat already! (certainly awash)
Graham constantly fears what would happen if I took ill. As a result, I fear that as well and grab every opportunity to have vaccinations to help protect me as I have an underlying immunity issue!
As Victoria has said, there’s loads of support available on this Forum and a wealth of experience and expertise (although I am sure most would say they are not ‘experts’. When the days seem long and hard, it’s nice to find ‘friends’ on here, who never judge and are always there with a warm 
as well as the advice we all need.
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Hi @lojwilliams1607 - welcome aboard! I’m not sure about this cruise ship thing…
I was going to say we’re all in the same boat…
A few of us have experience of caring for someone with dementia. It’s a hard road, so please do stay in contact, perhaps via “roll call”, as @Victoria_1806 suggested. Yes, we have some serious discussions but there’s also a bit of fun, which hopefully helps to lighten the load.
Hope to see you there!
Hello
Welcome from me too. I echo the suggestion of joining Roll Call. You can reveal as much or little as you wish. It has been a life saver for me at times. We share our good days and bad days - no judgement and we cannot provide answers or miracles but there is always a huge amount of support and empathy and often suggestions.
I am the Mad Cat of the Forum. I used to show and breed Norwegian Forest cats but stopped as never sold any. I ended up with 20c ats and 4 kittens. Sadly over last few years, my oldies have passed so down to 14 now and they are quite literally the reason I get up in the morning.
I care for my very difficult medically non compliant 84 year old husband. I am 62. He has not been diagnosed with dementia but personally I can convinced he has frontotemporal dementia as scans showed moderate atrophy of the frontol lobes…
Caring is very very lonely and isolating. Do you have a local ‘Support for Carers’? Sometimes they have local events if you are able to get out and they can sometimes provide a telephone befriender.
@lojwilliams1607
Welcome to the forum
My heart goes out to you.
I’m now an ex carer. My lovely late husband suffered strokes vascular dementia and other health issues. He at one point had delirium for quite a while. That was extremely difficult as he was in hospital and the accusations were awful. Eventually he was in a nursing home. No choice as the consultant wouldn’t allow him home, for his safety and mine.
It’s heartbreaking to watch the person you love decline as you go through ambiguous grief.
I visited 5 times a week in general and care managed. Making sure his needs were met and he had everything to make his life as comfortable as possible. My family helped with that too. They are still very supportive to me.
I hope you remain with the forum. We don’t judge and can have a rant if needed.
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I sometimes think that I am just “All at Sea” !!!
Oh dear this maritime theme could run and run !! (or splish and splash)
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How did you introduce yourself as a carer i can’t work out how to do it . I understand what you mean i feel some people just don’t understand how mentally draining caring is but very rewarding x