Caring for someone with multiple sclerosis (MS) without the right support can take its toll both emotionally and physically. It’s vital that you seek support at the right time to help you to continue to care to the best of your ability. For any caring queries you have, remember that you can call Carers Direct free on 0808 802 0202 from 8am to 9pm Monday to Friday, and 11am to 4pm at weekends and bank holidays.
Multiple sclerosis is often relapsing and remitting, which means that symptoms come and go over time. It is likely that when someone experiences a flare up of symptoms, their care needs will be higher. You should make sure that you get a break when you can so that you are fully prepared for these times. You can contact your local authority to arrange a community care assessment for the person you care for.
The MS Society offers respite for those with severe MS and has four respite centres in the UK.
Symptoms
The symptoms of MS differ in frequency and intensity between individuals and at different stages in the illness. Symptoms commonly include speech, vision and balance problems, numbness and pain, muscle fatigue and weakness, stiffness and incontinence.
You may find that you need to carry out tasks that the person you care for was previously able to do, such as making food for them and feeding them. If there are certain elements of care that you are uncomfortable with, such as lifting or personal care, make sure you seek support. Contact your local authority to get a carer’s assessment, which will help you get the support you need.
If the person you care for needs help with mobility, make sure that when you get an assessment, any necessary aids and adaptations are discussed. This could include, among other things, ramps for wheelchair access, a stair lift, grab rails in the bathroom, hoists or transfer boards. These aids and adaptations are usually accessed through a community care assessment from the local authority. You can find your local authority by entering your postcode into the Services near you box, above right.
If the person you care for has mobility problems and you need to lift them on your own, make sure you are doing it in a way that won’t damage your back. There are courses available to help you learn the correct way of lifting. Your local carers centre may be able to offer support with this. You can find your local carers centre by entering your postcode into the Services near you box, above right.
Relationships
If you act as a carer for your spouse, you may find that your relationship changes. You may find that your sex life changes or that your relationship centres around your roles as carer and cared for, rather than the spousal relationship you are used to. MS can also affect sexual function, leading to problems with arousal or libido.
You may feel that caring becomes your sole focus and that you have to sacrifice your other interests. This may lead to feelings of resentment and guilt. It’s important to address problems as soon as possible. If you bury your feelings they may affect your emotional and mental health. If you need advice about communicating with your partner, contact an organisation such as Relate. You may discuss your problems with Relate either alone or with your partner.
Are you living with multiple sclerosis, or are you a family member or friend of someone who is?
The University of Warwick is doing research on how people affected by MS use the internet to seek other people's experiences and share their own. Taking part in this research would involve a single telephone interview of about an hour. For more information visit the website or contact the researchers directly at: ipex@warwick.ac.uk
