Hello to all carers,I’m Gill and new here.
I look after two family members,one with dementia and one very elderly.
I’ve lived alone for 4 years and the loneliness is so awful.
I’ve tried some “groups” but they are usually older than me and I’ve little in common with them.
I’m a young 64 and would like to take holidays,go to the theatre and concerts
Caring takes away the fun and free person you once were.You live in a very grey world without laughter and smiles.
You don’t look after yourself or your needs because you’ve given away your energy to someone else who often doesn’t even notice you.
I am desperate to get me back again,but time has passed and I’m not sure that “I” exist now.
I’m hoping that someone Will see themselves in my words and share the loss and loneliness I feel.
HI Gill, welcome to the forum.
You’re not alone, many on here will understand exactly how you feel and offer support I’m sure. Caring can be very lonely and the pandemic is making this much worse as people are socially restricted and can’t attend social groups etc
We’re running online weekly meet ups for carers to take some time for themselves and chat to others, people say they really enjoy these sessions and meeting other carers. Do join us if you’d like to, there’s no pressure to share anything you don’t want to. Details here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups
Best wishes
Jane
Gill, I spent some years supporting, in various ways, all four elderly parents and a son with learning difficulties, as well as running a business with my husband. All work and no play, for both of us. My husband died of a massive heart attack, I developed a life threatening illness, requiring major surgery, with life long consequences.
You need time off from caring.
The way I look at it now is that if you love someone enough to care for them 50 weeks a year, then they should love you enough to give you 2 weeks off a year.
You also need some time off on a weekly basis, to give you guaranteed “me time”.
If you don’t stick up for yourself, no one will stick up for you.
When did you last have a Carers Assessment from Social Services?
When did SS last give your carees a Needs Assessment?
I used to think the me I used to be had gone, but I’ve found her again.
I stay in a single traveller only hotel in Crete, for two weeks every year. It’s not a dating hotel at all, just people on their own wanting to have a holiday in the sun. Some are widowed like me, some have partners who don’t like travelling or don’t like the sun, etc. etc. Many have been carers. There are about 35 beds; two swimming pools, one sunny, one shady; lots of trips on offer, or you can sit by the pool. There is no pressure to do anything.
My first week, after my mum went to permanent residential care, I went for a walk in the morning and slept all afternoon! In fact now I say the first week is to rest, the second to party. There is now a point to keeping my hair the way I like it, I have pretty dresses again, and I look after myself much better. I always come back feeling happy and relaxed, I’ve met old friends, made new friends. I’ve laughed, eaten and walked my way round Western Crete, and feel really alive again.
I promise you, the “real” you is still there. You just need to have time to relax and find her again.
Dear Gill,
Hello, I’ve only joined today after feeling so lonely and desperate for someone to reach out too , so I can relate to how you are feeling. I’m 46 and have a husband with complex PTSD , a son with Anxiety disorder and a son with Autism, I have a few ‘friends’ locally but feel completely alone because I don’t feel I can tell my problems to people with ‘normal’ lives as they wouldn’t understand or for fear of the stigma mental health issues come with. Trapped in the house because of Covid, had to give up my business because I couldn’t keep all the balls in the air. I wanted you to know that you are not alone, so many people are going through similar feelings, Its a struggle to get out of bed some days, I don’t do anything nice for myself and like you , feel I have no idea who I am or how to get back to the happy, fulfilled person I used to be.
Take care of yourself, take small steps to do something nice for yourself like have a coffee, buy a new lipstick , reaching out on here was a big step, you should be proud of yourself !
J
Hi Gill and the others,
I know exactly what you mean and where you are coming from. I’m in a house with 3 people I care for / look after. I’m never alone but I do feel ever so lonely at times. It’s not a nice feeling.
I, too, would love a group similar to alcoholics anonymous where you just sit and chat and cry and then go home. Obviously, it’s not going to happen with COVID all around us but in the future hopefully! There is a carer’s network at work but they are bloody useless, they give it all the “chat” but don’t ever actually do anything. Allegedly, the provide support to employees who are caring for family members!
I am taking each day as it comes and getting to the end of the day is a chore at the moment, to be honest. Pre COVID, once every two months I would book into a local hotel for one night but I can’t even do that anymore. It was something I really looked forward to.
I hope things get better for you.
Hi
The hotel in Crete sounds wonderful. How did you find it?
I’m sending you a PM.
Welcome to Gill and Jenni. We have all been where you both are now. I haven’t felt like my life is my own for more years than I care to remember. I have been looking after my Mum since my Dad died 14 years ago but sadly she died a couple of weeks ago. I also have an adult daughter who is on the autistic spectrum and has learning difficulties and is very hard work. Even if I go out for the day she is texting me.
You must try and find some time for yourselves even if it’s just going for a walk. I have a friend who has an adult daughter with Down’s syndrome and from the outset she has always had holidays by herself and immersed herself in loads of social activities. I used to think she was selfish but now I admire her. She is just someone who runs her life with military precision and allocates time to herself, time with her daughter, time with the rest of the family. I wish I was more like her!
Penny
I think caring for someone who has autism is incredibly complex.
Try as I might, it is so hard to get time to yourself. As autism has so many issues around social communication - from my experience it causes so many problems that the carers (us parents) have to end up stepping in.
It takes a lot of time, effort and planning to even begin to think about others taking over, even for a short time.
My experience is that often people with learning difficulties such as Downs find it easier to integrate with others, and therefore the by product of that is their carers can manage time off.
Doesn’t stop me trying though!
HI Gill, welcome to the forum.
Some people find these ideas useful, but remember that different things work for different people at different times. Only try what you feel comfortable with, and try not to put too much pressure on yourself. If something isn’t working for you (or doesn’t feel possible just now), you can try something else, or come back to it another time.
- Take it slow
- Make new connections
- Try peer support
- Try to open up
- Talking therapies
- Social care
- Be careful when comparing yourself to others
- Look after yourself