Caregiver Needs Often Take a Backseat

My husband has spent over 16 years being a caregiver. His son started showing symptoms of inflammatory bowel disease (IBD) at 3 months old, yet it took until the age of 3 for him to be officially diagnosed with Crohn’s disease.

During those 3 years, his days were spent trying to navigate the healthcare system and get his son the help he needed, despite being told consistently that his son was only dealing with “normal” toddler stuff.

Even after meeting an IBD specialist at a premiere hospital, who eventually diagnosed his son with Crohn’s disease, his life was in a constant state of unpredictability.

The unpredictability of being a caregiver

I know many patients and caregivers can relate to that. Regardless of what was going on with my husband physically or mentally, he had to be “on” in case his son needed him. And quite often, those times came in the middle of the night, or randomly during the workday.

My husband had to be prepared for anything, like I know so many of you reading this.

Add to that, given his son’s age and the complexity of his IBD, it was often difficult for my husband to decipher what was going on with his son. That put more pressure on him given he couldn’t depend on his loved one to let him know exactly what or how he was feeling. I digress...

Caring for a child and an adult with IBD

When his son was 8 years old and finally in remission, my husband and I met. About a year later, we began living together and I started getting sicker. (I've had ulcerative colitis since I was 13.) It was tough to get answers, but things would happen so quickly, which would require my husband to need to drop everything to be there for me.

Because of his responsibilities to his family, my husband had to put everything he was going through on the backburner.

He had suffered from chronic pain since before his son was born, yet he knew he wouldn’t be able to commit to figuring out the cause and then following through on what needed to be done.

After one appointment left him feeling like any movement to help himself might hinder his ability to care for his family (drive, be present, etc.), he sort of accepted that his lot in life was to care for others.

Ignoring his own health needs

While that is incredibly selfless and admirable, that mentality obviously cannot go on when something is truly wrong. As the years went on and I started to notice his chronic pain impeding on his life, I gently nudged him to go to the doctor and try to resolve it.

While he did a few times, nothing ever came of it, which was discouraging. It also required him to take time off of work, spend a lot of money on copays, etc. And we all know how much our health issues can become a full-time job!

Caregivers need to take care of themselves

About six months ago, my husband finally was at the point where he couldn't take it anymore and did whatever needed to be done. He went to multiple doctors, did 6 weeks of physical therapy, and focused on other things that his doctor recommended he do. That ended up costing a ton of money and a lot of time off work. It was all for nothing.

Fast forward a bit and my husband has a diagnosis and a plan. I am so thankful, and while he is definitely afraid of what him going through surgery might do to his family, I know he is grateful there might be an end to his suffering.

I plan to share more about this but I just wanted to give a huge shoutout to all the caregivers who put everyone else's needs ahead of their own. You’re not alone if you are like my husband. But, I will say the “cliche” thing... If you don’t take care of yourself (within reason), you won’t be able to care for others.