A life not envisaged: a caregiver’s journey 

Following on from Carers’ Week (5-11 June 2023), a Community member has written this blog for us on the challenges of being a carer.

My life’s journey has presented me with immense challenges. While caring for my beloved disabled wife, I have also taken on the roles of caregiver for various other family members – caring for my son with learning difficulties and supporting my terminally ill father and my aging mother who has rheumatoid arthritis and dementia.

The transition from caring for my son with learning difficulties to becoming the primary caregiver for my terminally ill father was an emotionally demanding experience. Balancing the unique needs of my son while providing comfort, support and end-of-life care for my father required tremendous strength. One has to navigate these complex caregiving roles, which can be emotionally and physically very challenging.

Following the passing of my father, I embarked on a 20 year journey of caring for my aging mother who battled both rheumatoid arthritis and dementia. This period presented numerous physical, emotional, and logistical challenges and a great deal of strain on our family, as the time caring for my mother had a direct effect on my own family.

My commitment to providing care, empathy, and understanding in the face of my mother’s deteriorating health and cognitive decline also left me with health problems of my own.

While supporting my son, father, and mother, my wife’s health deteriorated to such an extent that she is now also wheelchair bound. Juggling the needs of my wife, managing medical appointments, assisting with daily activities and providing emotional support is a challenge.

Seeking support

For others in the same situation, I would always advise you have outside help wherever possible, and to contact organisations like Carers Trust as they can signpost and advise for all that carers need.

We were in the enviable position of my wife having been a welfare rights advisor so we knew which forms to fill in where to go and what to apply for. Any carer will find it’s a minefield of paperwork and officialdom, especially when more than one department is involved.

The demands of being a caregiver to multiple family members has undoubtedly taken a toll on my physical and emotional wellbeing, because you don’t realise at the time how much caregiving impacts on your own mental, physical and emotional state. The caregiving responsibilities often means sacrificing personal time, social connections, and opportunities for self-care.

Caring for multiple family members requires an extensive support network and a strong sense of resilience. Seeking assistance from support groups, respite care services, and professional help can help alleviate the burden and provide you with the essential support you need. Taking time for self-care and nurturing your own wellbeing is vital for sustaining your resilience and maintaining the ability to continue providing compassionate care.

As you navigate the intricacies of caring for your loved one, please remember the following points.

  • Don’t be afraid to ask for help.
  • Remember you are only human. Don’t feel guilty for taking time out for yourself.
  • You have to stay fit and healthy both physically and mentally as you need to be there for them.
  • Never take NO for an answer. Stand up for your rights. You have to fight for everything.

No one wants to be a carer – it is forced upon you. It is not a life choice I expected, but a decision made for me.

Being a carer is hard work, it does take a toll. However, on the upside, you get to spend far more time with the ones you love, and you will find hidden strengths that you did not know you had, and a skill set that you would not have otherwise had (or use).

I have also developed great tolerance for life and other people and a great empathy and compassion for those people who need to be cared for.

We want to know your story!

Let us know more about the difficulties you face juggling life and work. You can E-mail us at: equalities@community-tu.org

For information on your rights at work, you can head to our website and click on our advice centre.

If you need help or advice, please contact us at help@community-tu.org or on 0800 389 6332.

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