One of the unending aspects of the caregiver’s life is filling out forms

Having gotten into a groove with Mom’s care over the last few years, I’ve been spared from the kind of ongoing, overwhelming bureaucracy one encounters at the beginning of the caregiving journey. There are tasks to which I’ve had to attend regularly, but they’ve been manageable. Unfortunately, when major changes occur, an avalanche of paperwork awaits.

Moving Mom to a new facility took some doing. It meant exit communication, entrance paperwork, establishing relationships with new staff, doctors and providers, verifying insurance coverage, setting up evaluations and ensuring everyone was doing their job. I do not like to micromanage, but sadly, oversight must be implemented if you want to get things done; the current business climate puts little emphasis on customer service or quality control, so caveat emptor (trust no one).

Mom’s care is complicated by the fact that she is highly vulnerable to infections and is also fairly inarticulate. UTIs (and recently, sepsis) have weakened her and have had a huge impact on her cognition, communication and physical abilities. I have been trying to get her the personal care she needs as well as physical therapy. Rehab facilities only go so far. When a patient can’t speak for themselves (as is the case with my mother), they tend to get lost in the shuffle. Consequently, I sought alternatives.

And I have needed to involve Mom’s health insurance company. I have her in managed Medicare, so there are a lot of compromises: they cover a lot more than traditional Medicare, as long as the providers are in their network.

Add to that the requirements of my life: I have a full time position with a financial services company (not to mention my husband, a cat with diabetes, clients from my graphic arts/video business, and a rock band). I have been trying to work while managing Mom’s needs, but I finally decided to take Family Leave in order to be able to focus on Mom’s care. I also needed to apply for Family Leave benefits with the state (my company does not pay for time off). So that means paperwork to my company’s administration, Human Resources and the State of NJ.

Is anyone else cognizant of the irony of having to take time off in order to apply for time off?

So here I am, organizing, making my lists, aggregating forms, trying to make sure I’m getting them filled out properly and following up with Mom’s doctors to make sure they fill out the medical certifications for all the parties involved (which is NOT easy; just getting a return phone call for a medical emergency is tough enough; administrative stuff for me? Oh, sure, right. Take a number).

I will say I am grateful to my employers for encouraging me to take the time and providing the resources to document the need. But I will be happy when I can look back at this chapter in the printed ledger of my life with amusement and gratitude that I got through it with my wits and sense of humor intact. Until then, print, sign, fax, mail, call, shred, repeat.


About traceysl

Digital Artist, creative technologist, problem-solving lover of life. Having cared for my mother, who died on April 14, 2015 after a long fight with dementia, I have refocused professionally to helping others through my experience. I have started a company called Grand Family Planning to provide unique Family Support Services. In this way, I share my knowledge and give meaning to the tragic turn of my parents' journey through the misery of dementia.
This entry was posted in aging, caregiving, dementia, Family, long term care, medical insurance, physical therapy, planning. Bookmark the permalink.

4 Responses to Papered

  1. Ellen Reaves says:

    Great article. I don’t think Caregivers think of taking family leave time earlier enough in the process. It is often after being exhausted and completely overwhelmed do we remember that we are human and need to recharge our bodies.

  2. Personal perspectives and experience are helpful. Thanks!

  3. dementedgirl says:

    It is amazing the amount of bureaucracy generated by healthcare – almost as if they want to put you off getting any assistance at all….

    This reminds me of the nightmarish year that mum-in-law was flooded out of her house, and I spent the best part of half a year liaising with various insurance agencies, underwriters, under-under-writers, under-under-underwriters, repair companies etc etc – think there were about twenty organisations in the mix at one point.

    Insanity-inducing for the best of us, but mum-in-law would never EVER have coped, had she had to get that sorted herself – even I had Excel sheets keeping track of which agency was doing what and when, who they reported to, contact details, deadlines etc just to help me not get lost in the maze, and yes, it also took a lot of officially “on the job” time to just get things sorted for me too!

    • traceysl says:

      It’s important for people to realize that we live in a culture where insurance companies and bureaucracies deny first, ask questions later. It’s incumbent on us, the caregivers, to understand that if most of this is hard for us, it’s virtually IMPOSSIBLE for older, less able people to traverse. Thanks again for your comments and support šŸ˜‰

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