National Caregiver Month

Caregiver is defined as a person who provides direct care (as for children, elderly people or the chronically ill). In the rare disease world Chronically ill can obviously overlap children and elderly, as we talk of those with a rare and typically chronic illness. A caregiver's role is typically determined by the age of the person with the illness, the relationship of the caregiver to the person they are taking care of and the level of care needed. For some being a caregiver may mean checking in regularly and being available for appointments, for others it may be to the extent of helping with mobility, preparing and eating meals, bathing and dressing and other daily tasks.

With all levels of caregiving there is deep dedication to the well being of their loved one and it takes a great emotional toll on them. As a caregiver myself, I know the role well. After mother, wife and Christian and it is title that best defines who I am in this world. It would probably be the best answer when people ask what I do, in place of homemaker, as I have never been great at taking care of a home or stay at home mom, as even my youngest is no longer a teen. Prior to being caregiver for our son, I helped in caregiving for both my maternal grandparents in their final years. So, it is something I have a varied degree of experience in.

As a caregiver, it is important to educate yourself on the condition that your loved one has. As a patient trying to understand all the information that is given to you can be overwhelming and the caregiver can help to listen and decipher information from medical professionals. It is important, if the person who is sick is able, that the caregiver does not take over, but is there for support at the level that the person wants and needs. It can be a thin line to walk.

Caregivers also have the important job of keeping their loved one safe while not taking away too much freedom or independence from the person with the illness. Every illness comes with risks, and often it is up to the caretaker to determine the possibility of the risk in relation to the taking away too much from one's life. A caregiver may want to hold on too tightly for fear of something bad happening, but that can restrict the life of their loved one when it is not necessary. It is so important for the person with the illness to be able to live their life to the fullest.

Caregivers must sometimes take a step back and look at things. They can get too close to the situation and may need others to help evaluate. They also need to be careful and take breaks for themselves. As a caregiver, do not be afraid to ask others for help, to admit when there are things that are beyond what you can do or to need a break yourself.

Caregivers are vital in the care of a person with a rare disease. The education, emotional support and help with daily living tasks may all be required at different times. It is important to maintain a boundary though and allow the person to live their life to the fullest, to gain independence to their fullest extent while being there if needed and also important to take care of yourself too.