06. Gifts to Arthur

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June 2022

About seven years ago, I noticed mental impairment in my wife, Ann.  Eventually a brain scan diagnosed it as vascular dementia, which has a very different trajectory than Alzheimer’s.  The slippage was accelerated by her fall and the broken humerus a couple of years ago, then slowed.  She has been vaguely diagnosed with spinal cerebellar ataxia and a handful of secondary deteriorations of her body systems.

It is important to me to put this in context.  First of all, individually, it is challenging to watch a spouse of 48 years become less of a person, as she consolidates her energy to focus on survival, losing her ability to do community on even the individual level.

On the macro however, this is fairly generic.  Today, about a billion people are dealing with elder care, whether it is their own life, their spouse, or parents.  Nothing new, dramatic, or unusual.

Bluntly, I am deeply grateful Ann is not suffering from cancer or anything like COPD.  I don’t think I would do well as a caregiver to chronic pain and panic.  We all die, and our end of life affects those around us, but if I had to choose, this slow deterioration is less noxious than some other choices.

So far, I have been able to be Ann’s caregiver, at home, which is her preference.  Megan has been with me for so long she is able to run the office, while I do my research and writing from home.  She checks in as needed, and we have set up a video studio here at the house.  She comes periodically to record, as needed.

Medical care has been unexceptional but adequate.  We are right on the border between two major medical systems that are obsessively focused on expanding their hegemony.  I recently changed primary care physicians, moving from one system to the other and I SHAMELESSLY manipulated her, playing the competition card. 

I explained to the new lady that we were unhappy with the other system because I was “not being heard” and she fluffed herself up like a tom turkey being challenged and proceeded to show me how much better they are than the other guys. 

Rose like a trout.

I have been pleasantly surprised at how well insurance has paid.  Ann has Medicare and supplemental private insurance.  In the last ten years, I have paid about $2K out of pocket.  Pretty impressive considering all the testing they have done.

Now, however, we are moving into that part of the journey that is between easy home care and institutionalized elder care.  I am using more and more alternative health resources and palliative care products that are not covered by insurance.

And looming on the horizon is having someone come in and care for Ann intermittently, so I can be gone for a few hours here and there.  That will be a big bump up in out-of-pocket expenses.

At present, our expenses are manageable, since I have had years to plan as I have seen the trajectory.

Going forward, expenses will rise.

I am sharing this not to be a burden to the Tribe, since I am very well aware I am not the only one doing elder care.  But many of you have asked what our situation is, so I am sharing the bigger picture, not in terms of a specific need today, but in light of the predictable trends.

Any donations you make to this fund are NOT tax deductible for you, and will be taxed as regular income before they get to me, so that we can maintain the highest level of integrity with the government.

I am grateful to the Tribe for your investment so far. We are surely in the top one tenth of one percent of all the people in the world dealing with elder care. I am keenly aware of that every day, and amazed at the level of provision God has sent my way through sales and donations.