For the second and final time, I am watching my natural parent succumbing to an extended illness. In this case, my mother does not appear to have much time left at all.
You might skip this section if you are sensitive to reading about one’s gradual loss of the use of her body.
Mom has what we are pretty sure is corticobasal degeneration (CBD). The lack of a definitive diagnosis is based on the rarity of the condition, and that very few doctors are even aware of it, let alone have any expertise in it. What is understood is that it is a degenerative disease with similarities to Alzheimer’s, Parkinson’s, or Lou Gehrig’s Diseases.
CBD is a cruel, cruel monster. The victim is helpless as he or she watches her body deteriorate gradually but surely over a period of about 5-7 years, but with the mind fully aware of the diagnosis and prognosis. There is no known cause and no known cure. The only therapies available are to merely slow down or relieve the symptoms.
Five years ago, Mom was climbing a mountain in Greece. Soon after she first felt a pain in her left leg, the CBD went through her body systematically as if it was using a checklist rather than attacking everything at once. OK, left leg – is it weakened? Check. Is she unable to use it? Check. Now let’s go to her left foot – is it weakened? Check. Can we work on the brain yet? No – remember your orders – one body part at a time and leave the brain until the end!
Ah, but guess what! We seem to have ended up with a sympathetic strain, as this CBD was good enough to impose dementia before Mom’s complete loss of use of her final limb and her swallowing reflex. Without going into any more of the brutal details, events of the last several weeks leads to a pretty safe conclusion that the handwriting is now on the wall, in permanent marker.
Estate Planning is for the Living, Not the Dying
You know what? As brutal as this story sounds, everyone has or will have a story like it, whether the death took years or was instant. My family is not any more special because of it than anyone else’s. In fact, we have had four different neighbors lose a parent within the last few months, two other good friends recently lost a parent, and another close friend is close to losing her grandmother. It’s just our turn.
The point of sharing all of this today is not to fish for sympathy. It’s not to point out whether or not Mom is adequately protected by a sound estate and financial plan prepared well in advance of all this. It’s not even to encourage you to call an estate attorney or a financial planner or to buy software or do whatever it takes to get your plan done today, right now!
Instead, the point I’d like to share is either a lesson or a reminder that when the death of a parent is imminent, the notions of who gets what, where everything is, and whether it’s all set up right begin to feel quite trivial and even petty.
I hope it is not a betrayal of any kind to say that today I don’t really give two hoots about whether Mom has the latest, greatest trust or a well-diversified portfolio. I instead want to know if she’s comfortable, if she still has awareness, and if Mom’s partner, my sister and I are doing enough for her during her final days.
Today, after seeing the shell of my fascinating and wonderfully unorthodox mother lying (hopefully blissfully unaware) in her hospital bed, I’m not really in the mood to think about her estate plan, because it’s really not about her, is it?