Over 2.5 million people across the globe suffer from multiple sclerosis, and most of them eventually needs a caregiver. Finding yourself in the caregiver role can be overwhelming; stay calm and read our advice!
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Multiple sclerosis is an auto-immune disease that makes your own immune cells attack the protective outside lining of your nerves. Eventually, nerves get damaged and lose proper connection with the brain. There is no cure, but it doesn’t mean that all people with MS are soon reduced to a wheelchair: in fact, one can have remissions that last for years. In any case, MS generally progresses, and new symptoms appear, such as numbness, tremor, partial loss of vision, slurred speech, pain in various parts of the body, incontinence, and difficulty moving (more info here). When these symptoms accumulate, the patient eventually requires a cargiver – a person who can be with them all day, be it a family memberr or a paid nurse.
Issues encountered by caregivers
Even for loving spouses or children, caring for someone with MS can be very hard and frustrating at time:
- Resentment at the thought of lost time and possibilities – children that the couple may never have, necessity to abandon one’s career, inability to proceed with studies or travel, etc.
- Burnout – many caregivers invest so much effort at the beginning that they soon have no energy left;
- Depression – apart from simply feeling tired and sad, having to take care of someone with MS can result in real depression – a biochemical change in the brain that requires medical treatment;
- Cabin fever – a lot of the time, the caregiver has to stay in the house with the MS patient; going away on holidays can be difficult to organize, and many caregivers hardly go out;
- Loneliness and fear of missing out – trips, partying with friends, normal work in the office – all this can seem unattainable;
- Difficulty dealing with the MS patient – new symptoms can manifest suddenly, and people with MS can be really difficult or angry during relapses;
- Unpleasant duties – no matter how much you love the person, it is never easy to attend to all their bodily functions, feed them, take them to the bathroom, etc.
Be a happy caregiver
If you take care of someone with MS, remember that your first duty is always to take good care of yourself! Sure, it will get very tough sometimes, but stay calm and use our tips:
- Join a support group or network (such as http://caregiveraction.org/)
- Find possibilities to go away on holiday, have a night out, or a sleepover at a friend’s place – you need an occasional change of setting!
- Exercise – it will keep depression and burnout at bay. If you cannot go out of the house too often, use yoga or dance videos at home.
- Try meditation – there’s nothing better against frustration and anxiety than breathing exercises, meditation, and relaxation techniques.
- Get help! You cannot possibly do everything, so don’t try – find a paid assistant or a willing relative to do some of the work.
- Apply for councelling – you may need someone to talk to, and caregivers often find little support from friends; a professional therapist is a great choice, especially if you feel depressed.
- Get a guidebook: MS societies in many Western countries publish brochures and guidebooks for MS caregivers, with lots of recommendations (take a look at this one, for example).
Being a caregiver is not for everyone, but if you do choose this path, you can find it very enriching. The key thing to remember is that caregiving shouldn’t feel like a hard sacrifice: it’s your life, and you have to live it in full and be happy.
Meeting the Needs of People with Primary Progressive Multiple Sclerosis, Their Families, and the Health-Care Community – Ncbi.nlm.nih.gov
Physical and Mental Health Effects of Family Caregiving – Ncbi.nlm.nih.gov
Life as a young carer – TheGuardian.com