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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Friday, December 28, 2012


Napa CA
Wednesday evening all of us—Marja and I, our children Kai, Karin, and Laurel and our sons-in-law, James and Gabriel—sat down to talk about money in the light of my illness.  The issues were a) the very practical one of transferring money to them in order to sequester it from Medicaid and b) the bigger issue of the financial future for all of us.  The conversation felt good.  I felt in them a quiet recognition of what was coming and why the conversation was necessary.  I was surprised to find that Kai and others were specifically interested in my end-of-life desires.  As I articulated them then they are pretty simple: I don’t want to be kept alive artificially after I can no longer recognize people; by “artificially” I would include treatment of even treatable infections (for instance, urinary tract infections) that left untreated would probably end my life.  And I want the family to feel okay about putting me in a nursing home when they can no longer easily care for me.  Especially if Marja were to die before I did, I don’t want the children putting their own lives on hold after I can’t at least mostly take care of myself.

Marja and I already both have wills and “Five Wishes” documents that go over this, but I will need to review them to make sure they take into account our new situation.

We mostly talked about the disposition of our money after both of us died.  We’ve already talked to them about the fact that most of Marja’s inheritance will be going to work for justice.[1]  We haven’t yet decided on the details but some portion will defray college tuition costs for the grandchildren; most, however, will be going to work against poverty.  While each of the children supports our decision at an intellectual level, it’s only natural that there is some unhappiness at an emotional level that the bulk of the inheritance will not go to them and their children.  I’m glad we had the conversation.

I’ve thought again how it will be when I can no longer actively participate in family conversations and decisions like this.  I think I’ll be aware of it and feel sadness (and most likely some resentment) at the distance.  Once again, these are thought about the future.  The present is filled with positives.

During this visit, Karin, Laurel and Kai have been intentionally making decisions to spend time together with me, and I’ve been very appreciative.  I’m happy that my children want to be with me before they feel like they have the responsibility to care for me.  An issue like this makes us all more appreciative, I expect, of how tenuous our lives are and how important it is to take advantage of the moment when it’s here.  I’ve been very grateful for this vacation and the desire of every member of the family to spend time together.  It’s clear that I will have a lot of support during this illness.

In reading to my grandson Otto last night, I noticed I had forgotten most of the previous chapter that I’d read the night before.  Otto has a phenomenal memory for the book, so it’s not reasonable to compare myself with him, but even reading last night’s chapter through a second time, the memory of the previous reading was not clear. 

[1] Just to be clear, we will not consider unsolicited proposals for gifts, so please don’t send any to us.


  1. wrote

    "The issues were a) the very practical one of transferring money to them in order to sequester it from Medicaid and b) the bigger issue of the financial future for all of us. The conversation felt good...."

    ...what did you mean by "b"... and where can I find out more information about the Medicaid lookback and "sequestering" my own investments from them? Please send a reply to thanks

  2. I've explored the issue of Medicaid in two posts, "Medicaid" last October and "Legal Stuff" in January. and what I meant by "the bigger issue of the financial future for all of us" was that it was getting to be time to talk candidly about how Marja's and my estate, such as it is, would be handled. I've been the one in charge monitoring finances and making the technical decisions, and I'm not going to be able to make those decisions for as long as we'd thought. Any aging couple needs to face those decisions, of course, but we often put them off. The Alzheimer's throws the issue back in my face and shows us the urgency.

  3. Have you thought about using some of your inheritance to create a non profit for those who's spouses have been diagnosed with Young Onset and need some extra help for care now that their spouse can no longer be left alone? I say this because with Young Onset people are not usually at a age to retire, or to recieve social security. I am speaking from personal experience, since my mom was diagnosed at age 53 and four years later has to have 24/7 care. My father will be retiring after this year to take care of her full-time at the age of 60.

    It's just a thought. Please take the time to tell your loved ones everything you want to say as if it was your last day. I wish my mom had done that, and now she is too far gone for that to ever happen. She still knows and loves me, but isn't the same person anymore.

    Hope you find peace, and happiness through this horrible disease.


    1. The circumstances for people who become demented at younger ages (some in their late thirties) is indeed much more difficult than for those of us who get it later. Younger people who become disabled can get Social Security for the disabled (SSD) if they've worked and supplemental Security Income (SSI) if they haven't, but those are grossly inadequate to the full costs. It's another gross injustice of an economic and political system that acts as if everyone were capable of supporting themselves no matter what happened.


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