This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Friday, August 1, 2008


I've got two appointments to look at the house scheduled for the week after next, one with a builder who is an aging in place specialist and one with the good-old-boy designer. That should give me a lot more information. The work can't start before May 2009, but I want enough information this summer to know whether we are going to go forward or not.

I've got a phone conference scheduled next week with my stockbroker, and pulling together information for him made me feel that the financial stuff is in pretty good shape. All the disability applications are in, and one of the three is approved. John's monthly checks are beginning to come--disability retirement has started, social security retirement starts later this month, and the annuity (and disability insurance if approved) start in September. The home equity line of credit is in place. Here is (most of) the summary I wrote for the stockbroker:

  • John gets employee health insurance as a retiree until Medicare kicks in, and then the retiree Medicare supplement policy is supposedly pretty good. But he does not have long term care insurance (one of the first things I did after he was diagnosed was get long term care insurance for me).
  • Life expectancy with a diagnosis of Lewy Body dementia is 2 to 20 years. I’m guessing 3-5 years of pretty much being able to take care of himself, then needing increasing help. I really don’t have a guess of how long he will be able to stay at home with part time care—it depends a lot on whether the psychosis that is common with the disease hits him badly. It could be six months or four or more years of needing around the clock care. The company from which we got an impaired risk annuity with his retirement savings bet he wouldn’t live more than 11 years (they are paying 9%).
  • We don’t have strong views on home care vs. a facility where I could easily visit him, but I suspect we will probably go with home care as long as possible because the nearby facilities don’t have separate dementia units.
  • The lawyer who did our prenuptial agreement (and wills and power of attorneys) says the prenuptial agreement may well be enough to shield my assets if we have to reduce ourselves to poverty so Medicaid will pay for a nursing home.
  • Now that John’s monthly checks are beginning to come in I think we will be ok, though I haven’t figured out the tax situation very well and we do want to do some travel while we can. The problem will come when the cost of John’s care goes up.
  • My retirement looks quite comfortable and I feel the kids are well taken care of. I do not want to retire early (though I am eligible for full retirement at 58).
  • John is able to go out to dinner with friends and nobody notices anything but the Parkinson’s slowness. He does get confused and has trouble with complicated decisions so he is leaving the financial matters entirely to me. Sometimes just the number of things I now have to manage is overwhelming.
  • I’m scared, but I’ve said I want to spend this summer trying to get things in order for the future, and then hopefully be able to live more day by day.
Tomorrow we get to go away for vacation in Hendersonville NC. Except I'm teaching an online course that ends on Wednesday and I'm way behind on grading. And our son's wisdom teeth surgery got moved up to next Friday. But I'm still looking forward to the vacation--a cabin at a retreat center, meals in a central dining room--I don't have to cook or plan.

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