There's nothing you can do to change the diagnosis, but reliable information and emotional support can make all the difference.
If your loved one has been recently diagnosed with an MPD you might be coping with many feelings. You may feel afraid of losing your loved one and wondering what is ahead. You may feel emotionally drained with caring for someone who is unwell and unable to do much for him or herself. You may feel guilty at not being able to understand or do enough. And maybe you have a job and a family to take care of too.
One of the most useful and empowering things that you can do is to educate yourself on MPDs and the treatments, side effects and self-care suggestions available. Please use this website as a resource to learn about MPDs and about treatments.
It can be difficult, exhausting and socially isolating to care for a loved one with a chronic illness. It is essential to take good care of yourself as well as your partner, parent or child. Plan breaks when you can rest and enjoy activities with friends. Think about ways in which others can support you, and ask for help. Take care of yourself physically by eating a nutritious diet, getting some exercise (perhaps a 30 minute walk daily), reducing stress and ensuring that you have regular medical checkups.
Even if your partner or loved one does not feel well enough to attend a forum, family members often find it very beneficial to attend these patient support events. You can learn about the treatments, ways to feel better and drug trial news. You can meet medical professionals, people with MPDs and their families who share the same concerns as you. MPDs are rare, so these events are great opportunities to meet others who really understand what you are going through.
Research shows that patients thrive better when a loving family member is there to look after them physically and provide psychological support. There are many ways to advocate for a loved one. These include:
If the person you are caring for is unwell, it can be reassuring to everyone to talk over plans for the future, including making a will and deciding how your loved one would like to die. These can seem like difficult discussions, but it is often a relief when difficult issues can be opened for discussion.
Partners can take the initiative in organising palliative care – care that primarily addresses the patient’s comfort and quality of life. If your partner is experiencing pain, fatigue, shortness of breath or other problems that erode his or her quality of life, don’t wait for help – ask for assistance from your haematologist, GP or specialist nurse. You may need to take the lead in solving problems at home. Keeping a log can help you track the problems so that you can provide detailed information to your partner’s medical team.
Many people who are helping someone with an MPD feel somewhat powerless – but have found that raising funds for a cure is a great way to take action and bring back a sense of doing something. Please get in touch if you think you’d like to help – email us at firstname.lastname@example.org
Caring for someone with an MPD can be physically or emotionally draining.