Caring for Someone With MS
Multiple Sclerosis (MS) is an unpredictable disease which can vary considerably from one week to the next. Hospital admissions for patients are common and, if the right support is not in place at home on their release, re-admission is very likely. As a carer, you are accepting an important but potentially challenging undertaking, so proper preparation and establishing your own support network is vital.
MS is a progressive disease which is likely to worsen over time, with the patient experiencing increasing difficulties in mobility and requiring more assistance to complete basic tasks. Consequently, ensuring that your home is properly equipped and that you have everything you need to support your loved one is important. Consider whether you are able to provide care on your own or whether additional adults, including professionals, are necessary. Are you able to manage financially and how will you cope if you need to increase the amount of time dedicated to your carer’s responsibilities? Explore whether you need new equipment to help the patient to walk, sleep or bathe safely and bear in mind the cost implications of purchasing any aids that are required.
Don’t discharge until you’re ready
If you are preparing to commence caring responsibilities for a loved one who is leaving hospital, your voice should be heard when the discharge plan is being written. The patient should only be discharged once you are ready to accept responsibility for care and, if needed, other support agencies should be involved. You should not be pressured into agreeing to discharge if you are not prepared.
At the outset, make sure that you understand the drugs regime that has to be followed and whether you have enough medication to last until an appointment can be made with the patient’s GP. Discuss how to respond to new symptoms and ask for any information or training that is necessary, such as lifting.
Obtain financial support
Carers are entitled to an allowance, even if they are not related to the patient, which will provide a weekly payment as well as national insurance credits towards their pension (if they are under pensionable age). The MS patient may also qualify for a Personal Independence Payment. Visit www.gov.uk/browse/benefits for more information on how to apply.
Take care of yourself
Caring is a demanding and time-consuming responsibility and it is easy to overlook your work and social life, as well as your need to unwind from time to time. Health professionals will be able to advise you on obtaining home help or arranging respite care periodically to give you a break. Asking for support is not a sign of weakness or a lack of care for your loved one; it is, however, a normal part of living your own life and not being weighed down by the burden of your responsibilities.
Share with others
Others close to you may find it difficult to understand that caring for someone with MS can be challenging, so you may find sharing your experiences with people in similar positions helpful. Support groups, either locally or online, bring carers together so they can unload their frustrations, discuss strategies or simply enjoy some adult contact and many carers speak highly of the benefits of engaging in discussions with other carers.
Caring for someone with MS is demanding but also rewarding, but it is important that you plan ahead, look after your finances and seek help and support when necessary to enable you to cope with the challenges of your role.