Why Information Matters for Caregivers

INFORMATION is a critical piece of a caregiver's journey. I feel like it's a bit of a hunt and peck type deal in the beginning, especially when you have no idea what's coming your way.

Absorbing everything being thrown at you can be overwhelming, especially if it's in an area you're unfamiliar. Luckily, or not, I do have experiences that make me comfortable in medical settings, so I've learned what to ask. If your person is able to participate in that, it's even better. You can't always be there 24/7....

However, the one thing that I think is critical INFORMATION is the Power of No. No is a full sentence. No is a right. No is permitted.

When my person's journey began this winter, we needed a patient advocate while we were in the hospital. There were lots of reasons for this, but the primary goal was to make sure all of our options were clear and we weren't being forced to make a decision too early, or without enough information. The patient advocate was wonderful and did remind us that we are allowed to say No.

While my person was in rehabilitation, there are certain protocols they're used to following for some of their longer term patients and especially for those immobile. This included bloodwork, frequent bloodwork. When my person began to understand the particulars between different medical staff, we always asked "what is this for?" Sometimes the nurses didn't know. That became a no. We asked for more clarity and moved forward only when we were INFORMED.

INFORMATION comes from all areas... even your person. When details began getting too much to remember, I grabbed a fresh notebook and started writing everything down.... and I mean everything. It didn't matter how little, it went down in the notebook. It saved me countless phone calls later, especially when surgery pre-op medical needed verification from one specialist. So recognize the medical staff isn't your only source - your person is full of it... how they feel, new symptoms, reduction of symptoms. Even basic bodily functions - which can be critical when someone is bedridden.

When your person is no longer cared for at a facility and they become your full responsibility, writing a daily journal is helpful. Identifying the highs, lows, progress, setbacks, moods... it all becomes important.

It's so easy to focus on the physical medical changes. It's the most obvious, but the emotional side of thigns is just as important. The journey from independence to reliance is hard on anyone. My analytical person was "just trying to get through this" until frustration built and we had an honest conversation. I had been waiting for it to come to the surface and I was glad when it finally was acknowledged.

Bottom Line... don't settle. Keep looking for help.

• Talk to friends - more people are caregivers than you think!

• Use ChatGPT like Google (use Temporary Chat if you don't want it to learn/keep track). Ask "is this normal", ask "how can I...".

• Find support groups.

• Ask hospitals/rehabs for information

  
  

Be curious. I'm finding information out daily just to solve different thoughts to make life a little easier.

Be vocal... the INFORMATION is there for you, somewhere.

So if anyone knows how to reteach someone who hasn't driven in 6 months, let me know.... LOL.