Jeanne was originally caring for both her husband’s parents from 2016. She and her husband had to move into their house and provide round-the-clock care without much physical help.
She managed medication, household administration and oversaw their care. Jeanne had to find a way of helping behind the scenes, whilst allowing her father-in-law to stay in charge of the care for his wife.
Since her father-in-law died in 2017, Jeanne has taken over the primary care for her mother-in-law. This involved learning everything about her mother-in-law, gaining an understanding of her specific dementia condition from GPs and learning about her care needs. Understanding more about the condition also enabled Jeanne to empathise and develop a tolerance of some of the more difficult behaviours that are associated with it. This included an understanding of why someone with this condition might on occasion ‘lash out’.
My mother-in-law would remember looking after everyone, organising everyone, and someone else carrying out this role was a source of frustration for her. As her condition has progressed, she is more comfortable and seems happier as she doesn’t have the same memory of how her life used to be.
Jeanne manages the household including the meals, undertakes all the care needs and is also a companion for her mother-in-law. As an attorney, she needs to think on her donor’s behalf in respect of her healthcare and financial decisions.
It takes an enormous amount of physical, mental and emotional energy. I got to the point some years ago where I did burn out, and I realised that I wasn’t able to continue doing everything that I was doing if I did not also look after myself. I had given up everything of myself, and given up all of me, however, I realised it does not need to be so.
What are the challenges that you’ve experienced around caring?
Apart from managing the physical, mental and emotional drain that comes with this role, the main challenge for me has been finding a balance between my caring role and keeping my self-identity. I used to run my own jewellery business. That’s on hold now. I had to move and, in doing so, lost my social circle. I can’t just go out whenever I want as I need to work any social engagements around my caring role.
I’ve also learnt that its important not to beat myself up. I’ve had to say to myself that the decisions we take to do with Mum’s care are the right decisions for the moment. And not to always worry about whether things can be done ‘better’. Its really important to keep a balance and to not feel guilty.
What would you change, if you could change one thing about caring?
The financial support for carers from central government needs to be reviewed. The Carers Allowance is very welcome, but its not realistic as a sole source of income for an unpaid full time carer. As a fulltime carer, I had to give up my livelihood. At the minimum of 35 hours of caring a week (in reality it is more hours than this), this equates to £1.77 an hour, which is way below the national minimum wage of £8.72. Yet without the contribution that carers like myself make, it would put massive pressure on the system.
What support have you been able to get with your caring role?
Islington Carers Hub have been able to give me information and guidance about respite opportunities. This is useful. It’s really important to develop a mind-set that recognises the value of taking time out for myself. Even if this is 5 minutes within my day. And to develop hobbies that I can do alongside my caring role. I’ve been able to let my creative side come out through painting and drawing. The work that ICH does is amazing, once you get to know about it. I’ve been able to find out about training sessions, information, resources and peer support groups.
I’ve also been able to get help from the Islington Dementia Friendly Communities project and give back to the project by taking part on the steering group. The aim of this group is to make Islington a dementia-friendly borough, with a network of dementia friends, and putting on information sessions. It helps people to understand more about dementia, to provide a safer environment for people living with dementia and to have dementia-friendly establishments. This is by making small changes. It could be by turning down the music a little or not just having signs to the toilet, but also back from the toilet. Taking part in the project gives another dimension to my life and helps to provide balance.
I have also had help and support from a number of other great organisations such as the Alzheimer’s Society, Arts4Dementia, Clay for Dementia to name but a few. I very much encourage carers to seek support from organisations specialising in their area of special care needs and to not stop reaching out and asking for help. There is no shame in asking for help.
In my opinion, not everyone who is caring thinks of themselves as a carer – I initially felt it was my duty to take on this challenging role as a daughter-in-law, especially as there was nobody else prepared to do so. I did not think of myself as a ‘formal carer’ but instead as family. Hence I did not realise that there was any support out there for me or indeed that I was not alone in this situation.
Lots of carers don’t recognise the massive contribution that they’re making or the support that is available to them.”
What are the positives about caring?
Initially, it took some time for me to come to terms with my lifestyle changes but after embracing my role I have grown internally as a person through my journey as a carer. It’s a challenging role and such a different situation from what I was used to. Giving someone a chance to live well is so important and rewarding. In my opinion caring for someone is not just about providing basic care needs but also understanding the person and their condition and engaging positively with them, giving them a sense of worth, dignity and happiness. I have special memories that I will cherish forever.
