Feeling so alone

I’m so lonely. It’s been a month now, and I’ve done well to adjust so far, but there are days when I’m so exhausted and I would give my right arm for a chat with another carer who understands what I’m going through. That mum doesn’t sleep, panics and cries and wants the commode anything between every 15 minutes and a couple of hours all through the night (I am in discussion with the Dr about this and will keep pushing for some help). That mum seems very ok during the day, then changes into a monster at night. That she blames me for what’s happened to her and how her life has changed, and how she can’t remember things.

That my brother has abandoned me to the role. That my cousin - who I supported through all sorts of upset in her life - has also abandoned me and give me platitudes such as “It must be nice to be able to spend time with your mum now” and “Make sure you find time for yourself” without actually registering that time to myself is a thing of the past and the suggestion that I could have any is so utterly ridiculous it feels like a deliberate insult.

I hope things will progress well enough with Covid for volunteer befriending (for mum) and carer support (for me) face to face soon. I can’t do zoom or other video meetings, I am too self conscious and yes I know I can choose not to show myself, I’m just uncomfortable with it so it doesn’t help. I called a carer helpline, and the person I spoke to was very nice but it didn’t really help.

\i know this is not forever. Mum may go on for a while and I may suffer, but her quality of life in in my hands and I will not let her down now. I can have some life back after she’s gone, and I’d never forgive myself if I don’t do this for her, having promised to for years. But oh my goodness, I am so lonely and so exhausted and so sad for myself!

Hi Jean,

I really hope the GP comes up with some ideas, as a nightly lack of sleep, is not sustainable.

Unfortunately many relatives are the same as yours. I think only carers understand what caring is really like.

It’s a shame you don’t do Zoom, but you aren’t the only one to feel as you do about it. Perhaps you would do better with a telephone befriender, rather than a carer helpline, as you would get to chat with the same person each time.

Have you had a carer’s assessment and a Needs assessment for your Mum? Worth getting these sorted now, so that as activities start up again - you will have everything in place and be able to make the most of what is available.


Hi Melly, thank you for the reply. Yes, I have had a carer’s assessment and mum has assessments coming out of her ears. Nothing can really be done until restrictions ease. I know so many people are in the same boat - mum depends on me for everything including stimulation and entertainment when she wants it, and I’m just too tired to deliver it on demand - it’s round the clock, because of the lack of a proper sleep period. I’m literally crying inside to be allowed to rest and think my own thoughts, but mum’s watching me like a hawk and if I don’t perform correctly with smiles and laughs she gets sulky and is really quite mean sometimes.

I recognise the behaviour patterns that she and my dad used to have - how they would take out bad moods, frustration or anger on each other and mum is doing the same with me.

I just need to let it all out and just typing it here helps a lot. Thanks for listening!

Hi Jean

I had a carer’s assessment before Christmas and it amounted to nothing really. But I did receive a phone call from our social worker last week who’s promised to help me out with the house (quite a mess now). A bit of hope there.

Although my mum’s Alzheimer’s disease causes different behaviour to your mum’s, I think I can understand your terrible loneliness and fatigue. I spend days talking to no one. I actually return to past conversations of mine and refine them here and there! That’s how bad things have become - actually talking to myself, in a sense. Even 20(!) years ago I’d never have believed my life could have changed like this.

I know it really is merely a platitude, but try at all costs to keep your chin up and keep pushing those professionals for help. I will admit that I broke down in tears last year to the social worker over the phone and she was extremely patient with me - quite kind actually.

Take great care, David

Thanks David, it really is so good to talk and hear of others in the same kind of situation - I suppose misery loves company!! Seriously though it means such a lot. Thankfully things have improved a bit for mum and me at the moment, she’s less confused and hasn’t had any more delirium, but the nights have still been awful, with a minimum of six times to do a tiny wee mostly.

Mum has pull up pants which will take a full night’s wee, so when she was feeling relaxed and rational yesterday we had a conversation about using the pants instead of calling for the commode in the night. It is a lot to ask, so I was very cautious but mum took to the idea - she doesn’t like having to get up so many times either. Last night mum remembered to use the pants and only got me up twice, the second one was because it wasn’t just a wee.

That will make so much difference if she’ll carry on, and she does seem quite happy to do that. The pants are amazing, they don’t feel wet to mum and aren’t smelly - worth every penny for good ones. I changed them halfway through the night and always use wash cream on mum to keep everything clean.

I know what you mean about talking to yourself. Mum’s conversation is quite good sometimes but then I really need to talk to someone else like you and others on here - and sometimes want time out to think my own thoughts and not worry about someone else too much. I’ll look into respite in the future, but not yet as mum is still feeling traumatised by the covid recovery unit experience (which seems to have been very unprofessional at times).

The carer’s assessment hasn’t really amounted to much for me either - I think a lot of this is box-ticking for the authorities. The social worker has only just got in touch but seems very nice.

Thanks again for the encouragement!

Hi Jean,

Wishing you a very warm welcome to the forum!

You’re not alone, we are sure that many on here will understand exactly how you feel and offer support. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to.

You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: Online meetups | Carers UK - there is upcoming events on: Monday 19th April, Monday 26th April and Tuesday 4th May. Please feel free to sign up to these events which are a great way for you to just relax with a cuppa and have an informal chat. This events are done over Zoom so no pressure Jean. But you may find it helpful.

Share and Learn: Share and Learn | Carers UK

You can contact our Telephone Helpline on: 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org) for advice regarding your circumstances.

They also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions

Best wishes