Multiple Sclerosis will not just change your life. It will also impact heavily on your family and friends and those closest to you. These are the people who may suddenly find themselves in the role of care-partner – a role they may feel unprepared for or fearful of taking on.
Your care-partner will undoubtedly feel the same emotions as you do, following diagnosis of MS: anger, hurt, sadness, guilt and anxiety about the future. Yet because they are the one who does not have the disease, their feelings may be ignored or overlooked. It is just as important to recognise the practical and emotional needs of your care-partner as it is for your own needs.
It is not surprising that the care-partners who cope best are those who take care of themselves. That means they talk about their feelings. They learn how to provide good care – and know when to take time off.
Being a care-partner is not easy. The best way forward is to work as a team; recognise each person’s needs and requirements and communicate these at all times. In this way, living with MS is far less stressful than trying to cope with it individually.
Knowing more means coping better
Care-partners need to know what to expect. Finding out as much as they can about MS is one of the first things in helping a loved one.
Some suggestions:
- Read books about the disease;
- Surf the web for information;
- Consult the doctors and/or nurses who are treating you;
- Talk to other people who are living with MS; and
- Contact local MS associations.
The more your care-partner knows about the disease and what to expect in the future, the easier it will be to provide the care needed.
Learn to expect the unexpected
MS is an unpredictable disease. It can cause a range of different symptoms such as vision problems, loss of balance and coordination, slurred speech, numbness and extreme fatigue.
The symptoms themselves are unpredictable, and usually they come and go. Because of the unpredictable nature of the disease, you may not know from one day to the next how you will feel, or if you will be able to do things as planned.
This uncertainty is one of the most difficult aspects of learning to live with MS and is a challenge for you, your care-partner and family.
Talk about it
Talking and sharing feelings is important. In fact, it’s one of the most important things that you and your care-partner can do in learning to cope.
Some suggestions for care-partners include:
- Don’t let them ignore or hide their feelings. Carers should feel free to discuss their concerns honestly and openly;
- Schedule regular ‘talk time’. This can make it easier to bring up difficult subjects;
- Make it a point to ask for feedback. This helps improve the role as a care-partner;
- If a care-partner feels overwhelmed, they should take time out to collect their thoughts before voicing them; and;
- Talk over and make long-term plans together. This will make both parties feel in control of the future.
The care-partner’s role in your treatment
There are many ways that a care-partner can help with treatment:
- Simply by assisting you with the preparation and scheduling of treatment, your care-partner can provide much-needed support and encouragement;
- Side-effects can occur with any medication. Your care-partner should be aware of the possible side-effects of a treatment regime, and help plan ways to reduce them; and
- Remember, it is both of you, and your entire family, that live with the illness. Sharing in the treatment process is an integral part of coming to terms with the condition.
