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.
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?
4 responses to “Long-distance caregiving sucks”
When my mom first went into the nursing home, I retained Senior Outreach at Jewish Family Services in LA, even thought we are not Jewish– the service is non denomenational and it was highly recommended. I believe this entity exists in other cities. They specialized in just this situation (families living at a distance). Perhaps more services have been founded in the last decade, but they were helpful in providing resources and had their own team of social workers who checked on my mom. I do not know if they accompany to doctors appointments, but they might refer to an agency that does. After my mom was settled into the home and I had used their resources (a training program for my mom, independent doctors evaluation, etc), I felt I no longer needed to work with them. Payment was in a sliding scale depending on what you could afford. If I think of anything else, I will let you know. I feel for you; it is so difficult to be far away. Hallie
Thanks Hallie for the info and support!
I would also check out the association of professional Geriatric Care Managers to see if there is one in your Mom’s area.: http://www.caremanager.org/
The ones I have met and the one I hired to help me find a better community for my Mom have all been registered nurses. There are typically around $175 / hour, but given the cost of your flight and their medical knowledge, might be cheaper and get you a quicker resolution to your Mom’s back pain.
I also wanted you to know that for whatever reason, I can never get the LIKE button to work on your posts.
Thanks Kay, I will check that resource out. Much appreciated. And thanks for letting me know about the like button bug, strange, I will take a look.