The following are some emotional affects and realities that families and friends of the patient may experience and how to deal with them. Remember that the health care team is here to help you. Speak to the nurse or social worker if you need extra support.
Having a family member sick with a life-threatening illness can turn your world upside down in a second. As the sick person starts the invasive and often debilitating treatment, you are plunged into a new reality of immediately needing to be responsible for things that you never have been in the past. These may include handling household finances, caring for minor children as well as the sick person, doing general household maintenance, and sometimes entering the workforce to provide for your family. This is both physically and emotionally draining.
When caring for someone who is sick, it is natural to feel burdened by all the new roles that have been thrust upon you. For example, you may be going from husband, father and financial provider, to husband, father, financial provider, caregiver for spouse and children, house cleaner, cook, secretary, financial planner and organizer.
It is important to remember that your role is not to be ‘everything to everybody’, but rather to be the best ‘you’ that you can be. This includes being able to set reasonable expectations and limits on what you can accomplish from day to day. Nobody can do everything. If you want to be able to maintain and juggle your new roles throughout the entire medical treatment and recovery, it is essential to take care of yourself and not get too overloaded. Accept help from the people around you. You need it.
It is natural to have a lot of mixed feelings about having to navigate unplanned role changes in your life. Some of these feelings include anxiety, anger, frustration, and feeling helpless and overwhelmed. These feelings may be directed at the situation at hand, but you may also have these feelings towards the sick person for getting sick and putting you in the situation in the first place. It is important to acknowledge these feelings and not feel guilty for having them. They are all normal emotions that go hand in hand with adjusting to a new diagnosis and change in life circumstance.
The best tool to negotiate role changes in families is communication. Having mixed feelings about the situation is normal, but it is important to articulate and address these feelings when they come up. If you do not give yourself permission to feel what you need to feel and express it freely, the feelings can fester, and become more difficult to deal with in the long run.
Even though having these conversations with family members at such a critical time is difficult, it is more destructive to brush feelings aside. Your feelings are valid and need to be shared.
If you absolutely feel that you cannot share these feelings with your family, seek someone outside the situation that you trust, or see a counsellor. Your Leukemia/BMT social worker will be happy to set up a counselling appointment with you, or put you in contact with an external agency for the same purpose.