The administrative burden of being diagnosed with a serious illness is simply extraordinary. I’m not complaining—the vast majority of it is completely completely necessary and much of it digital, but it is staggering.
Fortunately, I have a lot of help, and my training as an accountant gives me a head start. However, the tasks are relentless. Here’s a glimpse of what I and my wife and ‘team’ are managing:
- Filing claims for disability insurance and tax relief, including medical exams and documentation.
- Ensuring arrangements are in place for life insurance and pension funds.
- Managing the retirement process from my employer.
- Preparing end-of-life legal documentation, including an active and updated will.
- Organizing documentation for those who come after me.
- Trying to repatriate an overseas pension using medical dispensations.
- Handling tax and accounting for all of the above.
- Navigating medical processes, including diagnostic and genetic testing to rule in/out other issues.
- Managing ongoing medication and changes (I’m still on a pump).
- Working with social workers to modify the house (e.g., ramps) and plan for nursing support or hospice care.
- Purchasing equipment, such as a walker.
- Rebudgeting to reduce expenses and adapt to life changes.
- Completing medical forms required by the HMO for approvals.
- Researching clinical trials and new treatments to stay proactive in treatment management.
- Identifying entitlements, procedures, and key contacts for support.
- Scheduling, chasing, and rescheduling appointments and follow-ups.
This is on top of daily banking, cash management, compliance, and other tasks like insurance. Plus, I’m managing communication—updating loved ones, encouraging my support team, and helping maintain their motivation.
This is of course on top of dealing with the disease which is relentless and progressing which deprives you of sleep, makes it hard to walk anywhere and comes with a certain amount of pain, stress and worry.
A Complex Team Effort
This involves three lawyers, numerous medical professionals, and a new accountant. I’m likely missing other critical steps. Alongside this, I’m dealing with the increasing pace of my illness (Progressive Supranuclear Palsy, or PSP), its treatments (physiotherapy, rehab, therapy, acupuncture, exercise, yoga), and the mental challenges. I’m supposed to rest and avoid stress while wanting to spend quality time with my family. Sometimes, it would be simpler to just be the patient.
A Unique Burden
In my case, most of these tasks fall on me—the patient—which is unusual. My strange situation—forced to stop working, facing a terrible diagnosis, yet retaining the cognition to project-manage these tasks—is relatively unique. Often, these responsibilities fall to family when the patient cannot manage.
Project Managing My Life
This process is one of the strangest things I’ve ever done. As a self-confessed control freak, it’s almost the ultimate quest, yet it’s not one I chose. I wonder if there’s another way—should the system handle these tasks? My unique diagnosis makes me doubt it.
Lessons Learned
This experience has reinforced my belief that children should learn budgeting, financial management, and how to navigate national systems to prepare for life’s challenges. It’s also a reminder to secure life insurance early. I considered skipping it, gambling on a long life, but kept it in place. Once diagnosed with a serious illness, obtaining coverage is nearly impossible or prohibitively expensive.
This burden is massive and one many will face when supporting parents, family, or loved ones. Tasks like nursing, as PSP progresses, will fall to others, adding another layer of complexity.
A Manageable but Overwhelming Challenge
It’s all doable—we’ve all filed taxes, signed mortgages, or registered births. But this feels far more overwhelming. I pray my preparations align with “Plan for the worst, hope for the best.” The current trajectory isn’t promising, but I hold onto hope.
Back to work I go, project-managing my life. But I’d love to hear from others—how are you navigating these challenges, and what resources have helped you?
Got to laugh 🙂
It is something that has to be taken with a pinch of salt and humor. It comes with many amusing moments, interesting interactions and it is not all always top priority. As Nike famously say – Just do it
