I am a new member, my daughter has been struggling with severe mental health difficulties for the past 5yrs, she is now 17. In May of this year I had to quit my job to ensure that I am around 24/7 due to the high risk of suicidality (many previous attempts) etc, she is now receiving PIP and myself carers etc. To be honest I found it difficult to get my head around being considered a carer, due to being my own child and the disability is hidden outwardly.
I am wondering does anyone else experience the feeling of loss of self and guilt for thinking about self? I cant leave the house for any extended periods at all, so have not been able to see my friends out or do the normal things I would, alongside not working, I loved my career! Due to trauma experienced my anxiety levels are through the roof and I feel guilty for having my own struggle with our situation.
Any tips to ensure I look after myself properly would be appreciated I am struggling to put me in the picture at the moment.
Others will be along soon with probably more and better advice but I did not want you to feel your post was being ignored.
I think it is very normal to struggle to cope with the huge adjustment you are experiencing, however much you love your daughter. The isolation is very hard to cope with. Do you have a local ‘Support for Carers’? They may well have meetings - I know my local group do but I struggle to be able to leave the house for long too so I have a telephone befriender. Most have been Carers themselves and may be able to signpost you towards more support.
I would beg you to try and find time to see your friends even if for short periods. Would they be able to visit you?
Also this Forum is a lifesaver. The Roll Call is where we all post about how our day is going and what challenges we are facing - there is a lot of support, and empathy with some humor and fun creeping in. Maybe you could give this a go? The only other advise I can give you is to take care of yourself as you cannot care long term unless you do this.
Thank you Helena for your kind message, yes also new to any sort of forum so not sure what i’m doing Appreciate your advice!
Hi Angelique and may I echo Helena’s welcome. I saw your post but was just sorting dinner for hubby so didn’t have a chance to be first to respond.
I too have had issues with finding time for ME and I have learned the hard way that I need to do so. Last week I had a ‘heart scare’ and the Consultant has put it down partly to being on the go as a Carer practically 24/7. I have to make some changes or I will be back in hospital and this time it may not be so easy to get home…
We too rarely see friends and it feels very lonely at times. Lots of people do not understand what’s involved in Caring.
I used to go tot eh gym when I could, but that stopped when we lost our dog a year ago and we were both terribly upset. Now we have a lovely alternative dog who we love dearly. That is the chance I get to go out - dog walks twice daily. Other than that, I only tend to go out to take hubby to medical appointments and the like. We hope to get out for short trips but it doesn’t often happen.
It’s really difficult but it’s essential to try to work out some distraction and a way to get some time set aside for you so you can switch off just for a short while.
Carer’s Support Centres should be able to point you in the direction of some local groups or activities which may help depending on your interests. If you can’t find them online, ring your local council and ask for details.
I hope this gives some reassurance that you aren’t alone. As Helene mentioned, Roll Call thread on here is fun and a distraction as well as a way to chat and exchange news and information as well as being somewhere to start with questions.
I hope this is of a little help.
Hi @Angelique ,
I care for S he has autism and a related learning disability. He experienced health issues in his teens and his behaviour become very challenging at times. My GP pointed out to me that I was a carer as well as his (foster) Mum. This had never occurred to me. It’s hard when we are on high alert and can never properly relax as we are hyper vigilant to any changes/signs , having to deal with a crisis at any moment etc
Does your daughter receive any help from outside e.g a visiting tutor or mental health workers etc? Times when you know she is safe and can properly take time out for yourself?
You might enjoy some of the Carers Uk virtual meet ups
Hi @Angelique and welcome!
For local support groups in your area, it might well be worth starting here: Support where you live | Carers UK - it’s a searchable database of contacts around the country.
The type of support on offer is about as varied as the number of carers groups and organisations, so it’s going to be a question of searching and finding out, I’m afraid.
The members here are friendly and supportive, too. It’s well worth having a trawl through some of the posts here - the social area has “Roll Call” where we all sort of chat “over the garden fence” about all sorts. Why not pop in for a chat?
@Angelique You can always ‘lurk’ on Roll Call to get an idea of what goes on. We are very friendly and when you do feel free to open up, you will get support as whatever you are going through or feeling, some of us will also have had experienced similar emotions.
We do share bad times and also times when things go well and if you are having a bad day we will do our best to help you through.
I agree - we all have bad days (even the strongest of us)and that’s a safe place to ‘let it out’ as we all know what it’s like as we’ve been there and can help lift you back up.
Heya. Share and Learn is a good idea. Alternatively see if there are any local groups that have activities as well. Maybe see if there are any adult learning courses too. Good luck to you.
Welcome to the forum. I’m dismayed for you, having to give up a career you loved because it was the last option left to keep your daughter safe. However, I always feel that being a sole carer is risky, what would happen to her if you became ill? Does anyone else come into the house? Can you both go out together for a walk? At 17 she will soon be transferred to adult mental health services. How do you feel about that?
I and my husband have been caring for adult daughter from when she was 17 she is now 29. She has schizophrenia. I have found Pema Chodrons books on audible and in the past Eckhart Tolle talks on loneliness v supporting. I now have an allotment, 1 week so early days, so can be busy and get exercise and headspace and be with other folk who have welcomed us as a family.
If you can find a friendly place / club you can go to together.
Warmly and a big hug welcome
Start at the library. Good luck.
A hobby together is a really good idea. For us it’s steam engines, for others it may be dog ownership, just anything which gets you out of the house with the opportunity to talk to others in a gentle way.
A hobby is a good idea. Hugs and prayers too.
I’m also a new member, and going through the same thing as you. I am in my late twenties and became a carer for my husband a few years ago now. I have never been so alone and adrift.
One small thing I have found is listening to music that has meaning to me, just in headphones when I get a few minutes to myself. It isn’t much but it’s something cheap I can do just for myself, and it reminds me of what my life as been outside of caring.
You aren’t selfish for needing something for yourself- it’s essential to surviving what is a very isolating and often demoralizing situation.
I echo trying to find a hobby but realise that it is not always easy. If you like reading, how about looking to see if there is a local Book Club? It might be worth searching Facebook if you are on it to see if any local Clubs or Friendship Groups. I am an Admin of one of these and it has been invaluable. I agree with Thara it might be worth checking the library and seeing if they have details of any local organisations. Our library has a folder.
Years ago, when mum was a carer, she attended a relaxation session at the local carers centre. During the discussion on what helps people to relax, the trainer got everyone doing a simple breathing exercise and played some music for a couple of minutes. She found that really relaxing, and got herself a CD player - and I ended up running off some CD playlists of music she wanted. She found that she could listen to her music and chill while Dad was watching the telly. I have an iPod with all my music on - there’s a lot - and some audiobooks. It gets a lot of use - including right now. That and some photography does the job of keeping me (sort of) on an even keel.
I love my CD’s, many are replacements for records I had going back to 1973, living in Australia. Newly married, so happy, life so simple. Joni Mitchell, Peter Sarsted, Simon and Garfunkel, Roger Whittaker.
A diary and a pen helped me organise my life.
I’m with you there, Thara, I’d be lost without my organiser. Most are very bulky, took me ages to find a slimline version which I needed to fit my handbag. The latest version is a pretty turquoise so it’s easy to find if I put it down and can’t find it. The other essential is a long thin calendar so I know who is going where and when. Eldest son lives with me but does odd shifts at times, plus M and my grandson part time, and I pick grandson up from school some days.