Tag Archives: patient advocate

Mom has had a mysterious health setback, despite getting good results on all of her tests.

Trying to manage a health crisis from over a thousand miles away is beyond stressful. I know many of you understand.

Mom is tougher than she looks!

On Labor Day, Mom called me to tell me she was calling 911. The pain in her back was just too much for her to endure any longer. After several stressful hours, I called the hospital and they said they were sending her home, that she just had a lumbar sprain and constipation.

Frankly, I didn’t believe their diagnosis then and I still don’t. Mom continues to feel lousy, though her back is a bit better. Her digestive problems continue, and I fear there is something going on with the colostomy reversal.

The next step will be more invasive tests, like a colonoscopy (ugh, she just had one done in December) or an endoscopy.

These tests usually require someone to be present with the patient. So now I’m looking at a last-minute plane ticket close to $1000 and who knows if the test will get us any closer to a true diagnosis, when the other battery of tests didn’t show anything? By no means am I saying that spending the money isn’t worth it if I can help Mom get the treatment she needs. It is just another sober truth of caregiving from afar. It is costly, both in the financial and emotional sense.

I know patient advocates exist but in my mom’s area, they seem to work mainly in the hospital setting, answering questions and dealing with paperwork. I wish there was a service where I could hire a professionally trained caregiver to actually go with my mom to the hospital, and be there with her during tests and procedures. The advocate would ask pertinent questions and then be able to report back to me what is going on.

In an ideal world, I would be there with my mom in all of these situations. But we don’t live in a perfect world, and I know there are many other seniors living independently who do not have family members or relatives living close to them. With our rapidly aging population, I feel this will become an even greater issue.

Every time these situations arise, someone always asks, “Why don’t you just move your mom in with you?” or “Why don’t you move closer to your mother?” These people mean well, but these are huge, life-changing decisions to make, and frankly sometimes it is simply not feasible. That being said, feelings of guilt and doubt linger.

One thing I am immensely grateful for: my new job can be done completely remotely, and my boss has given his blessings that I can work wherever and however I need to if I need to go care for my mom.

If you’ve had experience with long-distance caregiving, what resources did you find most helpful?