Caring for someone with MS

To care for someone with MS, you must find time to care for yourself. Read more to find out how to access the support you will need.

Caring for someone with MS

Caring for a loved one is rewarding, but it can also be immensely stressful. As multiple sclerosis is unpredictable, it’s difficult to know what your loved one will need from one week to the next. This means that caring for someone with MS can be uniquely challenging.

For more information about the history, causes and treatments of multiple sclerosis, see MS: A Deeper Dive

Multiple sclerosis is a degenerative disease, so the care required will become more demanding as time goes by. It’s no good putting off accessing support until you burn-out. The health of your loved one is important, but so is yours.

If your loved one’s MS becomes ‘advanced’, they will be entirely dependent on others for their personal care. At this time it’s likely that their clinical needs will be complex and they will need to be supervised most if not all of the time.

Do you need help?

The answer to this question is always a resounding yes. It is unreasonable for a person to face the demands of providing care, coupled with the emotional burden of watching a loved one deteriorate, alone and unsupported.

Choose less resistance

Resistance to help is a big problem for carers and is the lead cause of carer depression and stress. There’s doing everything you physically can for a person, and doing everything you reasonably can. A diagnosis of multiple sclerosis is tough for both patient and carer, and the patient isn’t the only one who requires a plan to get through it.

Don’t feel guilty

All of the things you do on a week-by-week basis to take care of yourself, are vital for maintaining your wellbeing and your long-term health. It’s easy to slip into a cycle of guilt for taking time away to go for coffee with a friend, especially when your loved one is left at home alone. But remember that getting away will allow you the space you need to shed excess stress, and will also give them a break from you.

Staying put and being constantly involved with the condition can be a way to avoid the inevitable emotional impact. When faced with a situation you are more likely to ‘deal with it’ than think about it. It can be daunting to take time away, as that time might allow you to reflect on what’s happening and face the reality of it all.

It’s tough, it really is, but acknowledging your emotions and expressing them is a long-term investment in caring for your loved one. If you don’t, the stress can keep building and can cause carer depression and/or nervous breakdown.

If your loved one is becoming demanding, unreasonable or abusive as a result of resentment for what’s happening to them, you are not required to ‘take it’. Respect in a relationship is essential, and if respect is becoming a problem, consider seeing a counselor together. Your doctor should be able to help and advise you in this.

Share the load

The needs of a loved one are complex, but it’s important that you’re not the only one who knows what to do. Ask yourself, if you were to be hospitalised tomorrow, who would provide care in your absence?

To help with this, write it all down, including:

• Emergency numbers and the names of specific doctors
• Medication requirements
• Dietary preferences
• Routines
• Appointments

It might help to create a care calendar that you can share with family members, friends, and/or a carer. That way everyone can see what’s going on, and instead of feeling excluded, others can offer to take your loved one to a specific appointment, or on an outing if nothing else is planned. This will leave you with essential time to yourself.

Specifics help. If a family member offers help, it’s always more effective to reply with a task. For instance, you can ask them to do a supermarket shop and give them a list of what’s needed.

Plan your breaks

Acknowledge what you need to do to take care of your personal affairs, including:

• Personal hygiene – showering and washing your hair, for example
• Life admin – checking and paying bills, food shopping, medical appointments etc
• Fitness – staying healthy with regular doses of fresh air, gym activity, and/or fitness classes
• Social stimulation – taking time to catch-up with friends and family, also known as your ‘support network’

Write these down and think about how much time you need each day or week. When you’ve done this it will be easier to see when support will be necessary.

Professional care

If your family and friends are unable to provide as much care as you require, you may want to find out about respite care. Respite care services can be provided by the community, or they can be private.

When multiple sclerosis becomes advanced, it may be that your loved one will require help through the night. It is important for your health that you continue to get quality sleep, and overnight care can help with this.

If you are caring for someone with multiple sclerosis, Hometouch can help. Simply search by postcode and browse the profiles of self-employed carers near you. All of the carers on our site have gone through a thorough 42-point vetting process, and only 5% are accepted. You choose the carer you want to work with, and we provide support with contracts, payments, and holiday and sickness cover.