by Dana Michelle Cannon on Aug. 20, 2020

Civil & Human Rights Elder Law Estate 

Summary: Although I have counseled estate planning, conservatorship and estate administration clients for years and thought I knew the hardships that caregivers faced, the adage about "walking a mile in someone else's shoes" has proven that I had no idea how difficult it is to care for a loved one.

As some of my friends, family and clients know, my husband was diagnosed with a brain tumor in June.  Specifically, a meningioma.  For those of you who aren’t neurosurgeons, a meningioma is a tumor that grows from the meninges — the protective membranes that cover the brain and spinal cord. Most meningiomas are benign (not cancer) and slow growing; however, some can be malignant.  Thankfully, my husband’s tumor was benign and with the help of a particularly skilled surgeon they were able to remove the entire tumor.  He is now a month post op and his recovery is still a work in progress, but he is expected to make a nearly full, if not full, recovery in the next few months. 

I mention this, because although I have been an attorney for 15 years and worked exclusively in the area of Trust, Estates, Probate and Elder Law for nearly three decades, I am still learning.    In my personal and professional life, I have cared for an ailing grandmother; been embroiled in my own family feuds over an estate; dealt with the death of two of my employers; and guided hundreds of clients through their own family feuds; caring for their loved ones; and the aftermath when those loved ones pass.  Nothing prepared me for the frustration of dealing with the medical system on behalf of my husband or the emotional toll of having your life partner face his own mortality.  This is especially true when it comes to COVID-19.

While we are truly blessed to have excellent medical coverage and care, I do not know how someone without a fierce advocate and a good deal of time would be able to navigate the medical system.  Honestly, this experience has given me a new appreciation for the caregiver-spouse/significant other.  I am humbled by my clients who care for their loved ones and the sacrifice it takes.  I thought I understood.  I thought my experience in caring for my grandmother gave me insight and empathy for my clients who are caregivers for their loved ones.  I had no idea.  It is a completely different experience caring for the person who is “your person.”  Who do you complain to?  Who do you cry to?  Who do you seek support from?  I am sure that I still don’t fully appreciate it, because I am also blessed to have a husband who, even in post brain tumor recovery, is remarkably self-sufficient and independent. 

Despite his independence, he still relies on me to help with things he ordinarily would handle himself.  My daily plans are challenged…and usually disrupted entirely…by trips to the pharmacy, doctor’s appointments, and communications with his medical team.  It is particularly difficult in light of the changes due to COVID-19.  For example, I cannot always accompany him to appointments, and I was not allowed to visit him at the hospital.  We recently had an impromptu trip to the Emergency Department and I literally dropped him off at the stop sign in front of the hospital while he was suffering chest pains due to a pulmonary embolism.  I had no idea if he even made it inside, much less if he was being treated and if so, for what.

Although all of my estate plans include an Advanced Health Care Directive (“ACHD”) and all of my recent ones contain COVID-19 specific provisions, I understand that many people don’t need a new estate plan or even a new AHCD.  If you find yourself in that category, please reach out to me at Dana@CannonLegalFirm.com or (562) 543-4529 (text or voice) and I will send you a free addendum to your ACHD that offers choices specific to COVID-19. 

In short, I want to applaud anyone caring for a dependent loved one.  Even with the most gracious and independent of patients, it can be a thankless, time consuming and emotionally draining task.  My husband thanks me daily, but he is also frustrated with his own limitations and takes it out on me.  I also want to thank all of the medical professionals who go above and beyond to care for their patients and show compassion for their loved ones.  As a loved one of a patient with a good prognosis, I know how frustrating the process can be and I know that there is a likely end date for this particular journey.  If you are dealing with someone who’s prognosis is not as certain or optimistic, I can only imagine your struggle and I want to acknowledge your sacrifices.   If there is anything that I can do personally or professionally to ease your burden, please reach out to me. 

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