Chapter 10 "What do you know about this business?" the King said to Alice. "Nothing," said Alice

Another week gone by.  Four weeks - almost five since the diagnosis.  No real change in Dave that I see.  It's more that the deficits seem more obvious.  He has now lost his last two hours of work each week doing home health work with one gentleman.  I don't think it is reflective of Dave's behavior - I think this was more just a matter of the need for help coming to an end.  But now he has four days a week that all he does is watch TV pretty much all day, or play Spider Solitaire on the computer and go to exercise each day.  I spent time on the phone last week trying to track down a report on the driving assessment - that was a month ago!  The doc's office is going to see about tracking it down for us.  One day a week he does his hour of volunteer work.  He seems content.  I'm kind of jealous!

I bought myself a birthday gift - "Planning for Long-Term Care for Dummies" - some good leisure time reading!  Should help me fall asleep at night!  We met with an attorney last week.  It set the wheels in motion.  So many things to consider.  Power of attorney.  Health care power of attorney.  Living will - or no living will.  Health care proxy or something like that.  The tricky part is how to set things up in the case of my death - and how to make sure what I have in the way of life insurance and my pension savings ends up being used to take care of Dave.  I don't think I want to make Dave the direct beneficiary because he wouldn't know what to do with it to make it last.  I believe there is a "trust" it could be left in that would preserve it for his care - to continue to pay the mortgage and bills.  Or I could just designate one of my children as the beneficiary with their understanding of what it's for.  But will that create tax implications for them?  And how do I make sure that any money left over at the time of Dave's death goes to all three of my children?  I guess that is what we would set up for Dave - first to me, if I'm not around, then to the kids - I don't know what happens with his small retirement that is set up as a monthly benefit that then goes to me at the time of his death - but what if I'm not around?  Does that just end?  SO MANY THINGS TO FIGURE OUT!  Like what about the house?  I know we need to make sure it is set up with joint survivorship so it doesn't get caught up in probate, but then what happens?  I feel SO ignorant of all this - and it is so complicated.  It is certainly an education.  I want to make the best use of any time with an attorney - so I figure the more I know, the clearer questions I can ask so as to save time - and money - and feel comfortable with what I'm putting in place.  Plus I need to make sure Dave understands what he is setting in place for himself by giving me power of attorney, etc.  And I think I'll probably be spending a lot of time on the phone!  I have planned to take Fridays off from work for now when I can.  I need that week day time to make sure I can make phone calls, be on hold and stay on hold - sounds like fun!  Plus it will give me time to plan time with my dad - he seems to have a lot he wants to tell me about my role as executor.  So this will let me breathe and get it done.  And looking forward to a trip to visit my son and his wife in Florida - I want him to get to spend some time with his dad - I just don't know how this will progress, and we need to make the most of things right now.  Dave still doesn't really get that anything is wrong - it continues to amaze me - I've had many conversations with him - but the other night while skyping with my son, I told Dave to tell Mike about his illness, and he basically said nothing was happening.  Oh well.  That's ok.  It's just the way it is.

I'm fortunate to have a good friend I've worked with for thirty years who is the director of our Older Adults program.  She is so knowledgeable about the services and resources that are available in central Ohio.  She also knows a lot about the ins and outs of Medicare and Medicaid.  At my work, we also have a Caregiver program and I can get some good information there.  Never dreamed I'd be a consumer of our services!

I also recently have been connected with another central Ohio woman with a husband who has FTD.  That has been a gift.  She is a friend of my sister's, and now we are friends on Facebook and e-mailing back and forth.  Her husband's disease has progressed further then my husband's and he is in a nursing home, so she has been through so much more than I at this point.  She has been offering wonderful support, and I can't wait to meet her and talk with her face to face.  She is very willing to share her story and experiences, and I am so grateful.  It gives me a little perspective on this disease.

FTD Awareness week is October 5 - 12 - the theme is "Food for Thought" - I'm going to make homemade tamales - $18 a dozen - chicken or pork - and sell to family and friends - my sisters and kids are helping - should be fun!  Hope to have people pick up on Friday, October 10 and Saturday, October 11.  This is my husband's mom's recipe - I've helped her make them many times in the past - she makes them best - but mine are pretty good!  I made a practice batch this last weekend and they were GOOD!  I've asked for some brochures or some kind of literature to enclose with the food to help educate people about this disease.  Feels good to do something.