As a caregiver, learning how to find resources and medical aides is an essential part of caring for someone with a long-term illness.

As a caregiver, my medical knowledge is limited, and I am currently learning how to navigate each health concern.

Recently we helped my father-in-law with his mobility difficulties by purchasing a lift chair. This aide helped him stay mobile for several weeks before he passed away.

Finding and understanding these medical aids and tools is a challenge for caregivers that do not have a medical background.

Finding ways to learn how to work through medical concerns is essential to the caregiving journey.

When someone tells Dan, who is suffering from cancer, “You look great,” I often feel there is a more compassionate way to greet him.

During the cancer journey, Dan and I have noticed the decline in how he looks and moves due to the hardship on his body.

For others, the bias of wanting him to be healthy often leads them to say, “You look great.”

As a caregiver, I receive this as insensitivity, not as a positive outlook.

When speaking to someone with a long-term illness, it may be better to ask a question such as, “How do you feel?” as opposed to giving an uninformed assessment of how you feel the person looks.

Asking a question may be a compassionate way to learn more about how the person is doing.

As a caregiver, it is difficult to process changes in Dan’s health situation; big emotions often accompany new information about his cancer journey.

During long-term illness, there can be good news, but there can also be “bad” news.

Processing information about how an illness is changing is different for everyone, including caregivers.

In our situation, we often keep the news to ourselves before we share it with others.

Big emotions often accompany health news, and we have to process those emotions before we can share the news with others.

 

As the caregiver in a recent emergency room visit, it was nice to have a hospital worker check on my well-being in addition to that of the patient.

As a caregiver, I have spent many long days and nights with Dan in the emergency room.

Often, the trip was unexpected, and I don’t have food and drinks with me.

On a recent ED visit, the transport worker asked me if I had eaten. He was checking on my well-being.

While Dan is the focus, it was nice to have someone notice me and speak to the importance of taking care of myself.

 

Caregiving for a long-term illness means being ready to change plans, even Christmas traditions when the illness demands attention.

As a caregiver, I have learned to leave nothing to chance and that there is no place for procrastination, as life can change very quickly and very unexpectantly.

On Christmas Eve, our family had a quiet day planned when in the middle of baking cookies, we received a call that changed our plans. Instead of a quiet family day, Dan and I spent the rest of Christmas Eve with his father in the Emergency Department discussing hospice care.

Long-term illness has a way of changing gears without notice.

 

While caregiving, I choose to make those I love a priority leaving no room for regrets after they are gone.

As I prioritize the events and duties in my life, caregiving often goes to the top of the list.

A goal I have is that when the people I love, especially those dealing with long-term illness, are no longer here, I will have no regrets.

I am trying my best to spend time and give attention to the people I love while I have the chance.

While this may mean other desires I have are on hold, it is important to me that through caregiving, I am showing love and care to people in my life.

 

A caregiver may be grieving, but the grief often has to take a place behind the active role of caregiving.

We all grieve in different ways.

In my caregiving village this year, I have lost my father and mother-in-law and have felt the emotions of grieving.

As a caregiver dealing with long-term illness, however, I do not have the luxury of grieving how I feel most comfortable or necessary for my emotions.

Grieving has to fit into the caregiving schedule. There are still visits to my father-in-law, doctor visits with Dan, and all the other ordinary caregiving tasks.

A caregiver often does not have the same freedom as others to follow the journey of grieving.