Supporting a loved one with Cauda Equina Syndrome

Our charity offers support to family members/loved ones and carers of patients with CES. For your loved one, a diagnosis of Cauda Equina Syndrome can be devastating. In a few hours, lives can be changed forever. Adapting to a new self can be long and difficult.

By offering care and understanding your support will be vital along the long road to recovery. Because of the invisible and sometimes embarrassing issues that affect people after Cauda Equina Syndrome, coupled with constant pain and reduced mobility CES can make people feel very isolated and alone. By taking the time to talk and understand what your loved one is going through, you can show them they are not struggling alone.

Our Advice

Be patient

Once your loved one returns home from hospital it will take time for them to adjust. Simple tasks like washing and dressing will be difficult. Even those who are walking often deal with immense nerve pain with every step. For many, simply sitting down is unbearable for any length of time. Household tasks may be almost impossible – offering to help, without being asked will be most welcome. Trips out will need planning and may take longer than before, considering access to toilets, even ground and parking.

Be positive

Point out the positive moments, marking milestones and achievements. Looking back months later will highlight improvements, though they may seem small and insignificant at the time. Find alternative things to do or replace old hobbies with new. Find things the family can do together and main memories. Encourage your loved one to try new things out and move forward, rather than dwelling on what they cannot do anymore.

Become an expert!

Read what you can about CES. It is known as an ‘invisible’ condition. There are many things our loved one will be experiencing that you are unaware of. By learning about CES you can also advocate for your loved one when they need that extra support and will reassure them that they are important to you and valued. Talk to each other and take time to listen Communication is so important. Your time, care and empathy will be crucial for their emotional well-being. Many of the people we support say one of the most frustrating things to deal with is family members who think they are magically “fixed’ after surgery. That families very often do not understand what life is like for them now. Children also become carers by default after a diagnosis, and can benefit from some regular respite away from the home. There are some wonderful charities who can help you and help support your children.

Finally, Take care of yourself!

A cauda equina diagnosis affects the whole family. You may feel guilty or even resentful and the load heavy. Reach out for support If you need it. Remember our charity is here for you, as well as those diagnosed with CES. Give us a call on our helpline for a chat anytime. We will be happy to hear from you.