Multiple Sclerosis Care: How do I Care for a Loved One with Multiple Sclerosis?

Written by Jack Walsh18/04/23


Complex Care

Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, it can cause problems with balance and mobility, vision, energy, and thinking. It’s a life-long condition, which means many people with MS will need a form of care in their later years, however some people will only experience mild symptoms throughout their life. In this article, we’ve looked at some of the areas where support may be needed. 

Facts about MS

  • Around 130,000 people in the UK ahave MS.
  • It’s almost three times more common in women than men.
  • It’s a life long condition but not a terminal one.
  • MS affected everyone in different ways, this means no two people will have the same range or severity of symptoms


Multiple Sclerosis Trust


When you don’t communicate properly, MS can put a strain on your relationships. If you’re supporting a loved one, it’s important to let them know you’re there in whatever capacity they need. This may be as simple as giving them space when they need it, or adjusting your plans together last minute if they’re having a bad day. 

It’s essential to gain a deeper understanding of MS and its symptoms. By increasing your knowledge of the condition, you will have more of an idea of what you or your loved one is experiencing. However, don’t assume things – remember,  everyone’s experience is different. Why not try asking questions like – 

  • “So, how are you really feeling?”
  • “You’re looking good. But how are you feeling? If you want to talk about your symptoms, I’m listening.”
  • “I know MS can make some people feel … but I know it’s different for everyone. Tell me how it is for you.”

The unpredictable nature of MS

The symptoms of MS vary between individuals, and the day-to-day expression of the condition can likewise differ considerably. With unpredictable symptoms, it’s not always easy to anticipate how a person may feel, making planning a challenge. However, having routines wherever possible may help retain some structure and make managing each day a little easier, but it’s also important to ‘go with the flow’. 

Practical support

If you’re supporting a loved one with MS, you’ll likely need to take on a few everyday tasks on their behalf. This may include things like household cleaning, cooking, and doing laundry. They may also need occasional help with running errands, attending appointments, and getting out and about  – either via public transport or in the car. Many people with MS continue to drive long after diagnosis, however they do need to inform the Driver and Vehicle Licensing Agency (DVLA) who’ll assess their fitness to drive. Some people may be given a temporary licence for two or three years, and be reassessed at the end of this period. 

Some adaptations around the home may help a loved one do a lot of daily tasks for themselves. for example, a lower kitchen counter and sink can make the kitchen more accessible for wheelchair users, and ramps and grab rails can make it safer for those with occasional balance or coordination problems. If you’re not offered one, as your doctor for an occupational therapist referral, as they’ll help you identify areas where adaptations can be made. 

Emotional changes

Your loved one or family member may experience a wide range of emotions when living with a chronic illness such as multiple sclerosis, and it doesn’t always follow a linear pattern.

Your friend, partner or family member may find themselves grieving for the life they used to have. They may be in denial over their condition, experience anger and resentment, feel fearful and anxious, or a combination of the above.

Working towards acceptance of any chronic illness is not easy, and mental health can often be negatively impacted along the way, with mood swings and stress, anxiety and depression. It’s helpful to acknowledge and not underestimate the emotional challenges they may face alongside the physical ones.

Day-to-day mobility challenges

Fatigue, general muscle weakness, muscle stiffness and feeling off-balance can all make day-to-day activities and regular exercise challenging for your loved one. Thankfully, there are certain adaptations for home life that can help, such as bath seats, and mobility aids. 

You can also help by keeping on top of clutter and removing tripping hazards such as loose rugs, electrical wires, pet toys, and shoes to help the person with MS get around their home safely. 

Continence considerations

As MS symptoms develop, the bladder can become affected. Many may find differing degrees of bladder issues, from having an overactive bladder and experiencing incontinence to trouble urinating and feeling discomfort.

If continence becomes an issue, an MS health professional can provide advice and suggest medications and different tactics that can help alleviate some of the discomforts your loved one may be experiencing. You can also self-refer to most NHS Continence Advisory Services, the Bladder and Bowel Community can help you find your nearest service. 

The MS Society also offer some helpful suggestions for managing bladder incontinence. These include strengthening your pelvic floor with special exercises, ensuring a person with MS is drinking enough, and carrying a free Carry our free ‘I need some help’ card when out and about to ensure they can get access to a toilet when they need it. 

Chronic pain management

Life with a chronic condition often comes with chronic pain, and there are some specific forms it can take with MS. For example, trigeminal neuralgia (TN) affects the face and can be incredibly intense and painful.

Pain around the waist is referred to as the ‘MS hug’, which feels like numbness or burning and can be triggered by temperature changes or even a gentle touch.

There are also muscle cramps, spasms, twitches and other nerve pains that can affect those with MS. It can be helpful to determine whether there are any identifiable triggers. A doctor or MS nurse should be able to advise on medications for pain relief. Also, wearing loose, soft clothing may be more comfortable and hot and cold therapy in the form of wraps and ice packs can provide some relief.

Care for the carer

It can be physically and emotionally demanding to manage your own life while trying to support a loved one through their challenges with MS and provide them with a level of care. Looking after yourself is vital so that you can provide the best support possible.

Taking breaks and prioritising your self-care isn’t selfish, and it’s certainly not something that should make you feel guilty. Ensure that you’re eating a balanced diet and getting adequate rest. Elder can help you organise the deserved respite care that you may need.


The cost of in-home respite care

Our prices are for a unique care package of respite support with a dedicated live-in carer able to help with standard hourly care or specialist care, which can be live-in.

At Elder, we're clear and upfront about the cost of care – with no hidden fees. You can also check whether you are eligible to receive funding and benefits that can help to cover the cost of different types of care.

Additional support

You don’t have to deal with MS on your own. Below are some helpful resources. 

  • MS Society – For the latest information on living with and caring for MS. You can also use their helpline to speak directly with an MS nurse.
  • Shift MS – A friendly online community of people living with MS. 
  • Overcoming MS – a programme created to help you make healthier choices and live a fulfilling life with MS. 
  • MS UK – a charity dedicated to helping anyone impacted by MS to live healthier ands happier lives. 

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