When caring for a loved one with myelodysplastic syndromes (MDS), feelings of loss and grief are natural. Although grief is often associated with the death of a loved one, grief can also be caused by loss of your loved one’s health as well as loss of freedom, control, finances, and plans for the future.

You may feel reluctant to examine or talk about your emotions associated with grief and loss through MDS. It may feel like acknowledging the loss as a permanent reality. Emotions may also be too complicated to separate or examine all at once. However, it can help to reflect on your feelings or to have a support system with whom you can discuss your feelings.

Grieving As A Process

Grieving is a response to loss, and it is a changing process that is unique to each person.

As a caregiver, you have been involved in all aspects of your loved one’s life with MDS, and you may grieve with each small loss along the road – a negative reaction to transfusion or treatment, your loved one’s changing mindset, or progression of their disease. In that sense, your grief will most likely come and go in waves.

Especially as MDS progresses, your sense of loss surrounding the illness will progress and the grieving process may become more intense and complex.

Each caregiver will experience different losses and will grieve in a different way. You may find yourself grieving and re-grieving during each stage of MDS. You may feel fear, sadness, anger, depression, or even hopelessness.

Anticipatory Grief

In many cases, caregivers find themselves anticipating the ultimate grief to come. If you are experiencing anticipatory grief, you may also experience a strong sense of guilt, since you are grieving the loss of someone who is still alive. However, this expectation of grief is a completely natural coping mechanism.

You may grieve the loss of who your loved one “used to be” or dread the future loss so strongly it becomes a form of grief. Anticipatory grief allows you to prepare for the emotionally inevitable. Preparing for the death of your loved one can give you as well as other family and friends, the time to reflect upon any unresolved issues and seek support from others.

Although anticipatory grief is often an emotional reality for many caregivers, it is also important not to let that mental preparedness distract you from enjoying what time is left. It may feel like the loss is imminent, but you should remember that you still have the chance to spend meaningful time with your loved one.

Bereavement

While grieving the loss of a loved one, you may experience feelings similar to those you experienced leading up to the death of your loved one or your feelings may become much stronger.

Although grieving is unique to each person, there are five common stages of grieving: denial, anger, bargaining, depression, and acceptance. Each person will go through the stages in a different order and at a different pace, and some people do not go through every stage.

Grieving does not have to be limited to emotional pain. You may also experience physical symptoms, such as periods of crying, a lack of interest in eating, weight loss or gain, trouble concentrating, difficulty with sleeping, or a weakened immune system.

Each person grieves over the loss of a loved one for a different length of time. You may begin to feel better within weeks, months, or years. Even once the main period of mourning has ended, you may experience periods of sadness or grieving later on, particularly during holidays, birthdays, anniversaries, or other dates with special meaning to you and your loved one.

Methods Of Coping With Grief

Grief can be complicated, confusing, and difficult to control or predict. Acknowledging the uncertainty of grief can help you regain a certain amount of control over your emotions.

During times of grief, it is natural to experience a decrease in productivity or efficiency. It is equally natural for a feeling of numbness to prevent any real grieving to take place until the reality of the loss has set in.

You can deal with loss by continuing to take care of yourself physically; asking for help with housework, chores, or other activities; and finding ways to express your emotions, such as crying, engaging in a creative hobby, or attending a support group, where you can connect with people in similar situations.

On the other hand, you may deal with your grief best by working through things on your own, at your own pace, and without the involvement of others.

The most important aspect of grieving is that it is different for everyone, and not every coping mechanism is equally successful or applicable as a result.

Above all, express your emotions with your loved ones as best you can while you still have the chance. Even if it is difficult to put these emotions into words, telling a departing loved one how much they are loved can provide comfort in grief.

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 4, which is about understanding your loved one’s perspective.