I just wanted to ask you all for some advice as you are the only people who will really get it.
I have been a full time carer for my son for the last three years - he is nearly 23, and is agoraphobic and has anxiety issues.
My husband works full time and my youngest is at Uni, so for five days a week it is just my son and I.
I just wanted to ask you all how do you cope with the loneliness and isolation. I don’t know what to do with my day other than look after him and do the housework. I have had to give up so much to do this, and don’t know what to do.
We have no family nearby, and due to his anxiety issues cannot access respite. The local carers group has started to do online meet ups but they are at a time I can’t attend so am on my own.
How do you get through the days, because I am feeling completely lost at the moment.
Thank you and hope you are all doing ok, because I know how tough it can be,
Hi there,
I am sorry you so alone.
Well done for reaching out.
I too felt alone, I post on Roll call thread for support and gradually got support to make changes.
Carers like us have to help those we care for by finding ways to care for ourselves, this important,
Warm thoughts to you and your family
Ula
The isolation and lack of freedom is one of the hardest things to deal with. You mention your local Carers Group. Do they offer a ‘telephone befriender’ service? Mine do as like you I cannot easily get to physical meetings and do not find it easy to do things online. There may be a waiting list but worth a go? Often they have been carers themselves and can make good suggestions. Roll Call is very good and we share the ups and downs and yes some silliness and humor creeps in - been a life saver for me.
Thank you so much Ula - I wasn’t aware of Roll Call, but will definitely have a look. It’s working out how to finding the best way to care for myself that I find the most difficult!
Thank you for taking the time to reply, I really appreciate it.
Dear Clare
I feel less alone knowing you feel pleased to hear from me.
I mostly go on roll call as I care for my daughter with schizophrenia and work. It works for me to have a group on roll call that support one another.
I find Pema Chodrons talks v helpful, but no worries if that is not your thing.
I hope your day has been the best it can be
Warm wishes
Ula
@clare_2252 I just cannot stress how much Roll Call has helped. meJust 'lurk; for a while but please join us. Such lovely posters and we do try to offer support and humor.
Roll call is a great https://forum.carersuk.org/t/roll-call-september-2024/125628?u=victoria_1806
I wondered if you have any specific hobbies/interests, would you and could you do an online course?
Future learn, open university, masterclass, udemy - there are various organisations where you can do a course 100% online in your own time
I read A LOT, and have a website that I publish
The platform it’s housed on has a huge array of publications, where you can read and comment as much or as little as you want - and feel connected when you find publications that resonate with your interests: https://substack.com/
Finding online communities, like this one are out there - unlike our pre-internet days
Feel free to message me or ignore any of this, we each have limited time and brain capacity with each of our unique circumstances. I hope you already feel more connected being here.
Take care and best wishes
Like soe of the others who have posted, I am a regular on Roll Call which is often described as a ‘chat over the garden fence’ ! We have a natter, get to know each other and have a moan about what’s going on and most importantly offer and get support and friendship for our daily grind. On there you’ll find a wealth of experience and knowledge as well as judgement-free advice.
Have you heard of the CarersUK “Care for a Cuppa” online meets? Depending on your commitments, that could be a way to socialise too.
You comment about being isolated resonates with so many of us. I care for my husband who suffered a stroke 2 /2 years ago and we had to close our business. He started to make a recovery but has had a series of health problems since which have knocked him back very badly. These days I rarely go out socialising other than waking our dog. That does help a lot because it gives me exercise and I do meet some people in the village. Our home is in a very small village with the nearest town being around 8 miles away. In our set-up I have always been the “social” one - the gregarious type - and it’s been hard as I have been cut off from the usual social scene. People we thought were friends have dropped away because we don’t/can’t go out for meals regularly or to a pub etc… That all makes it much more isolating. I don’t have the all the answers, but I do find the Forum a great support network.
I hope we’ll see you on Roll Call where you can be assured of a warm welcome and we have light-hearted as well as serious chats there.
Just remember, it may seem you are alone, but you aren’t.
I’m a carer for my 20 year old son who has severe mental health challenges. I’ve been a single parent since he was just under one and gave up work in October to care for him. I struggled to begin with and felt panicky when I thought about losing my freedom again, but found it helps if I set myself challenges for each day. He gets up at lunchtime so I work on the garden, paint, clean my car, do DIY etc etc. I also make the most of time he spends at his dad’s some of the weekends and make sure I always go out - walking is my thing or spending time with friends. I hope you manage to find something which helps and which you enjoy.
It has been interesting to hear how you all deal with lonelyness . I havent found a way yet but i hope to find a way. At the moment i feel totaly without hope as the years slip by ,and there is no sign of any change. I didnt know about roll call i will have a look .
Thank you so much for your reply, it’s so kind of you to take the time.
I am an avid reader, and it’s no exaggeration to say they have been a saviour for me so many times!
I love your suggestions and am thinking of starting a course too.
I think what I really miss is the human connections- I used to go out with my friends and meet for coffee but that is just not possible at the moment, and I miss it.
I know there must be so many people in the same situation, and I feel for them as I know how tough it is.
Thank you so much Chris, it sounds like you and I have a very similar situation, in that I live in a small village, and everyone here is lovely, but getting out apart from walking my dog is not possible during the week.
I miss going out with my friends, and am surprised how quickly they melted away. We have no family nearby so are on our own, and it’s just the feeling of Groundhog Day that is wearing me down!
I will definitely have a look at roll call too.
I really appreciate you taking the time to reply, and hope you have a lovely day,
Thank you so much for your reply, and I hope you are doing ok too.
I agree with what you say about doing things - unfortunately my son doesn’t sleep past 7 in the morning, so have little chance to do something.
However he has started to go to his room in the afternoon for a couple of hours to play with his trains or go on his iPad so am using those hours for myself!
It’s hard isn’t it, and I only think that those people going through it get it.
Take care and have a lovely day,
Best wishes,
Clare
You’re very welcome @clare_2252 there are many online courses that have zoom or discussions online. Thankfully, with communications these days it’s possible to connect, virtually. It doesn’t have to be ‘live’, most courses cater for flexible ways of working.
keep us posted - FYI @selinakylie and several folks love reading, you could poss swap ideas on a new topic thread here too
