Tag Archives: patient navigator

Long-distance caregiving sucks

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!

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?


Filed under Awareness & Activism, Memories

Patient navigators: Assisting caregivers through the medical maze

I wish I had known that patient navigators existed when my father began his journey into the world of hospitals and nursing homes. I think it would have been worth the fee to have someone who had the knowledge and the experience in handling hospitals, nursing homes and billing issues.

With my mom, I felt I had better control over the situation. The hospital’s discharge planner gave me literature on the skilled nursing options in the area, and encouraged me to visit each of them before choosing one. I did and picked the facility with the best rehab services, because that was Mom’s most pressing need at the moment, her need to learn how to walk again. While the facility I chose did come with its own host of issues (that are pretty common in these places, unfortunately), the rehab was excellent and Mom left the facility fully walking on her own.


But with Dad, it seemed like his healthcare decisions were made by strangers. It didn’t help that often he was far from home when these decisions had to be made. Often, Mom and I felt like it was easier to go along with whatever the hospital recommended, because we were not familiar with the city Dad was in and the care options back at home were not sufficient for his needs. But it was when Dad first entered the nursing home world that we seemed the most helpless. I received a call just before Christmas 2010 with Mom telling me that Dad had been moved to Roswell. I assumed she meant to a hospital there because he was sick again, but no, it was an assisted living facility with a dementia wing.

I don’t know the details but Mom swears they moved Dad from the temporary rehab center he was in without her permission. I’ve asked people in hospital administration and they claim that is impossible, that payment and paperwork would have to be conducted up front. I believe this is probably the case, but see how a patient navigator could have been of great use to my mom in this situation?

She would not have been as overwhelmed and the patient navigator could have clearly explained what our options were. This is still just a small industry so I’m sure these services are not available in all areas but it is good to keep in mind if you are a caregiver facing major medical decisions regarding your loved one.

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Filed under Awareness & Activism