Myelodysplastic syndromes (MDS) can represent a period of transition for a caregiver, but especially for the patient. As caregiver, you may be going through many of the same emotions as your loved one. This parallel experience can help you to understand, appreciate, and respond to your loved one’s emotions.

Changing Roles

As you become a caregiver, your family or relationship roles may be shifting. You may be assuming control of more responsibilities, and at the same time, your loved one may be feeling a certain loss of control.

There may be an impulse to swoop in and take charge, in order to ensure your loved one can focus on only his or her health. But for many patients, this sudden transformation of roles can be upsetting, especially in the case of a son or daughter caring for a parent. It is helpful to be sensitive to the emotional impact your new role may have on your loved one and to discuss the tasks that you are taking over.

In other ways, you may also feel powerless. Being unable to control your loved one’s health may make you feel as if you are only a bystander and that you cannot do anything to help. However, there are many ways you can help your loved one get the best care possible, such as researching treatment options and ways of making your loved one comfortable as well as attending medical appointments with your loved one.

Communication and openness between you and your loved one is also a good way to combat these feelings of helplessness, since you both may have similar feelings.

Anxiety For The Future

When your loved one was diagnosed with MDS, your mind may have automatically jumped to the future. What does MDS mean for your loved one, and what does it mean for your own life? How will this affect your plans for the future? What can you do to prepare for what is to come?

Your loved one is most likely working through these very same thoughts and concerns, and communication can often help both of you cope.

Again, a sense of powerlessness may surround thoughts of the future, both for you and your loved one. As a result, both of you may feel fear or anxiety, and it is these shared concerns that you can focus on while supportting your loved one.

You can address these emotions by being open and honest with your loved one about fears and concerns. Although it may feel uncomfortable or frightening to discuss the future, your loved one may not have anyone else with whom to discuss these emotions. To your surprise, you may find that your loved one is more at peace with his or her future than you are. In the end, it can help both of you to talk through what may be a shared anxiety, or you may gain strength from knowing how your loved one feels.

Growing Through Being A Caregiver

Most caregivers are grateful for being able to be by the side of their loved one during his or her struggle with MDS. Although illness is always unfortunate, those who are involved can grow through the process by gaining a greater appreciation for life and by developing stronger relationships with the ones they love.

You may find yourself becoming closer to your loved one in a way that may not have been possible before MDS. You are creating a shared experience that may change your perspective of both yourself and your loved one.

But even though you may be watching and empathizing with your loved one every step of the way, no one can experience MDS in the same way a patient does. By appreciating this difference, you can support your loved one with MDS while also respecting his or her thoughts and emotions during a difficult time.

For more information about caring for a loved one with MDS, please see Part 1 of the series, which is about making your own health a priority, Part 2, which is about attending doctor appointments, or Part 3, which is about coping with your feelings of loss and grief.