Being someone’s ‘carer’ may only be part of the relationship description. You may be a parent, partner, sibling, child, grandchild, friend or other relative. This relationship can be just as, or more important to you. You may also have other caring roles, for example, taking care of your children. Or may even have a diagnosis of ataxia yourself.
Every one of us will likely have caring responsibilities at some time in our lives, with the challenges faced by carers taking many forms.
We interviewed Trevor Fleet during Carer’s Week, a retired General Practitioner and NHS ambassador for Ataxia UK. Abigail, Trevor’s daughter, aged 29, has had ataxia for fifteen years.
Trevor says: “I am trying to get involved with the NHS and trying to highlight ataxia as a condition which is very rare and is not really known much by some of the general public and certainly by GPs. So, I just want to increase awareness of ataxia within the medical world, including spreading the guidelines.”
“Despite being a doctor, I received very little information about a diagnosis for a rare condition. In the area, there are not many people with ataxia the same age as Abigail, who she knows, so we are only meeting people who have ataxia through Ataxia UK.”
The roles and responsibilities that carers have to provide vary widely – they can range from help with everyday tasks, such as getting out of bed, and personal care, such as bathing, to emotional support, such as helping someone cope with the mental health impacts of living with ataxia.”
Trevor points out the importance of reaching out and talking to someone he says “being a caregiver for someone close to you can bring certain stresses. There is a physical aspect to caring, but you also have an emotional side, and it is nothing you will have experienced before. There is no way just to get rid of it, and it is there 24/7. Finding someone you can talk to who is going through the same thing as you can make things easier.”
Many carers juggle their caring responsibilities with work, study, and other family commitments. Some, in particular younger carers, are not known to be carers. They do not tell relatives, friends or health and care professionals about their responsibilities because they fear separation, guilt, pride, or other reasons.
Trevor mentioned something significant during the interview about acceptance, he said: “acceptance is crucial. My daughter still has not accepted her ataxia. She is very annoyed and angry at times. We go through the process of anger and denial. But also, as a caregiver, you need to accept it as well.”’
Our Carers support group met for the first time on the 15th of June and were joined by Renee & Peter from Carers First. They gave us an informative presentation about the general benefits a carer may be entitled to and how to access them. If you missed the meeting, you may watch the presentation here.
If you would like to see what benefits you may be entitled to as a carer, please see for more information.
There are a few charities that may provide some more information on caring and being a carer, here are a few:
- Carers UK
- Carers First
- Carers Trust
If you are struggling to access support or unsure where to look, please contact your local HealthWatch in your area.
We would also love to see you at our next Carers Support Group meeting, where we will be meeting over Zoom to discuss ‘Managing your mental health as a carer ‘. Register in advance for this meeting.
