Background
Rahima grew up in Middlesbrough with her young brother and sister. Her sister has complex needs and has always required extra support, care, and guidance. Their mother was the full-time carer for her youngest daughter and naturally, Rahima took on some of the responsibility which increased with age. When Rahima met her husband, married, and left the family home her mother recognised she could not manage to care for her youngest daughter which led to Rahima’s sister moving into supported living accommodation close to the family home. Rahima felt guilt and responsibility for this situation, she continued to provide support to her mother and sister as needed. Rahima and her husband had two children and lived nearby to the family home where her mother continued to reside with her son until he married and moved out. After Rahima’s brother moved out his relationship with her became strained as he started to withdraw contact and any support to their mother which made Rahima feel like she needed to overcompensate for his lack of presence with their mother and added to the responsibility on her making her feel abandoned by him at a time when she needed his support.
Cultural barriers
Rahima’s mother has had ongoing health issues over the years including arthritis and diabetes. Rahima has always supported and helped her mother, the demands of which noticeably increased when her mother started living alone. Rahima did not recognise that she was in a caring role for several years, “within Asian culture you are raised with the expectation that you will care for your parents as they get older, it is something we do without really acknowledging it and certainly without asking for help or even recognising it is okay to do so, for fear of being judged for not being able to do your duty as a daughter or son. Caring in our culture isn’t visible, it happens but it is hidden within families which is also true for mental health, it is not recognised and is seen as being shameful so isn’t talked about”. As her mother needed more and more help Rahima began to struggle, she was juggling full-time employment, and home life with her husband and two children alongside caring for her mother. Her mother was prone to falls as she has low mobility and would struggle to do daily tasks without Rahima’s help. She was managing her mother’s medication and liaising with health care professionals, providing personal care as well as emotional and practical support. This put a lot of pressure on her resulting in her feeling overwhelmed and burnout. This was exasperated during the Covid-19 pandemic as Rahima started to work from home which led to her mother not recognising this as being work and was telephoning Rahima all the time, this created a lot of stress and guilt for Rahima as she recognised her mother was experiencing loneliness, but she didn’t have time to give her within working hours so felt like she was constantly letting her mother down. The pandemic and particularly during the lockdown periods was challenging as it created difficulties in carrying out practical tasks such as essential food shopping for her own home and having to also do this for her mother, the practicalities of trying to do this in one were too difficult and was meaning Rahima was having to make multiple trips to the shops. As services closed their doors to visitors it also become more challenging to engage with key services such as GPs, Pharmacists etc. “Everything felt slow and delayed in the pandemic and this was frustrating as the need didn’t slow down and only increased.”
Burnout
Everything came to a head when Rahima’s mother had a fall last year in the early hours of the morning, she was stuck on her wet-room floor for 12 hours which led to her developing pneumonia. Naturally, this was a particularly distressing time for Rahima and her mother spent a period of time in hospital followed by a stint in respite accommodation. Rahima recognised that she was struggling to cope with the demands on her and the number of roles and responsibilities she was juggling. “Everything was on me; I was completely burnout. I had no time at all for myself, I was struggling to concentrate at work, so my work was suffering. I was taking my frustrations out on my husband and children, and they were getting the worst version of me, which was making me feel terrible, I felt guilty. I have a really supportive husband, but this all put a strain on our relationship. I was also feeling frustrated with my mother, I was having to support her, and care for her and she was no longer there for me, and I needed her. I know this was out of her control but essentially I became mother to my mother and struggled not to resent the situation which in turn presented more guilt”.
Whilst in hospital Rahima was advocating, with her mother’s wishes, for her mother to move into a more manageable sized home that didn’t have all the memories of a full family home which reinforced feelings of loneliness for her, after a long process she was able to secure her mother a bungalow through Thirteen Housing which was close to the family home and her sisters supported living accommodation and provided a fresh start.
“When my mum went into hospital it was really stressful, I was worried about her all of the time and also had to organise and sort out lots of things alongside my own home life and a full-time job. I was honestly at the end of my tether, and something had to give, I was struggling to cope. I informed my employer of my situation and caring responsibilities as I was often emotional at work and felt that my work was suffering, my employer was really supportive, and I was able to take extra time off when needed.”
Connecting to support
Rahima opened up to a nurse at the hospital and asked if there was any support she could access, Rahima has highlighted that this is something that is naturally a cultural barrier, but her own health and well-being were being compromised and she recognised she needed to take care of herself for herself and also for the sake of her children, husband and mother.
“The nurse talked to me briefly about Carers Together and referred me to them, I had never heard of them before. I was contacted by a member of staff, Mike, and we talked about what I was going through. At this time, I was at complete breaking point, I was in a rut, so spent most of our initial conversations in tears and I am really grateful for how well Mike supported me at my lowest. Mike encouraged me to contact Middlesbrough Council for a Carers Assessment and Needs Assessment for my mother and this has been invaluable. A package of care is now in place for my mother which includes personal care and assisted shopping. This has given my mother a level of independence back and has reduced my stress significantly as I am not constantly having to worry whilst I am at work as I know she has carers looking after her at different points. I do not qualify for Carers Allowance but to be honest the practical support for my mum is the only thing that could have really made a difference to the level of pressure on me. Carers Together also helped me to look at activities my mum can attend to reduce her isolation and loneliness which also provides me with breaks in my caring role. She now attends a weekly social group at Woodside Resource Centre which she enjoys and gives her the opportunity to connect to other people and gives us more to talk about.”
“Caring for a family member is not like being a Care Worker as a paid profession, there is no ‘end of the day’, you are unable to switch off from it and many of us do it alongside employment. Since support has been put in place, I am in a much better space mentally and physically. The responsibility is still there and always will be however some of the burden has been lifted. I don’t feel as pressured and know I don’t need to beat myself up if I can’t make it round to see my mum every day as I know she has some contact each day. I am still juggling responsibilities but feel like I have a few less things to manage. My stress levels have been reduced and I can spend more quality time with my husband and children. I also now have a much better relationship with my mother and any feelings of resentment I was having towards the situation we were in have significantly reduced coupled with the guilt associated with this.
Improved relationship and mental well-being
We have more things to talk about now as she is connecting to other people and we both have some independence back. We are waiting to hear back on a decision to increase my mother’s package of care which she will hopefully get, and this will include her attending another daytime activity which will make a big difference to us both. I am starting counselling which I had put my name down for around seven months ago which has only just become available. I feel like I am over the worst so may not pursue this but will attend the first session and make that decision with the counsellor.
Advice to others
I would encourage anybody else who finds themselves looking after family members, particularly those in Asian communities, to remember that you are entitled to have your own life. Recognise when things are getting too much and ask for help, there is no shame in it. You may feel like it’s your duty to keep quiet and keep going, but this helps nobody, it is also your duty to take care of yourself. Contact an organisation like Carers Together, they really can help you and if they are unable to, they will put you in touch with the right people and get you where you need to be.”
Many thanks to Rahima for sharing her story with us in support of our efforts to make caring visible, valued and supported for Carers Week 2022. Rahima's story is real however the images and names we have used are free stock images anonymity at the carer's request.
Do you need support?
If you can relate to Rahim's story and would benefit from finding out what support is available, take a look here. You can also contact Carers Together directly who can give you the information, advice and support you need or put you in touch with the most appropriate service to support you: Carers Together (01642) 488977 info@carerstogether-rc.org.uk
