Family Update

I posted this info on CaringBridge today. That website is so helpful for staying informed on the health concerns of family and friends. So here’s the latest on my friend and family (and spouse) John Christopher Jones.

Chris has been struggling lately. He has lost a lot of his get up and go. This is the result of Parkinson’s (diagnosed in 2003) and shorter periods of the medicine kicking in and doing its thing.

We are taking some proactive steps. And looking in to some alternative living situations where he can get more care — one way we’ve done this is through hiring our beloved caregiver Loreeta to come and spend the night four or five nights a week for the last couple of weeks. She helps Chris up several times in the night so that we all can get a good night’s sleep. Hayden and I and any other child or friend who is around are all on duty at all other times to give him a lift or a push or adjustment or whatever’s required. While Chris still loves to shop and cook, his mobility needs are becoming very challenging.

We realized how challenging things were for Chris when he went for two weeks of respite care to the Will Rogers Home in Saranac Lake. Chris totally enjoyed the activities — hours of bridge and outings. He saw a moose! But Chris needed more help than an independent living location allowed — for example, he was calling to the front desk in the night for a hand up to get to the bathroom and this was a bit beyond the pay scale of the night clerk. So for the last few nights there, Chris hired a live-in helper.

Saranac Village, Will Rogers Home. Chris enjoyed happy hours on the porch and pool in the basement.

In any case, we’ve begun doing some due diligence back in NYC — researching places for more support. Chris would like to stay near New York as this is where his family, friends, church, career, life have been. We visited Woodland Pond in New Paltz where our friends live. But it seemed like a pricey investment and may not even have been viable due to Chris’s preexisting condition of advancing Parkinson’s — and again, he needs more help than independent living places offer.

Next week we’re looking at a residence on the Upper East Side. And Chris will be going for respite with his sister, generous and caring, in Florida in the coming weeks. We are blessed with loving families.

All this news and on a personal note, my wonderful father Edgar’s health is declining — his heart appears to be problematic and he has lost a lot of mobility as well.

So keep us all in your thoughts and prayers. The girls are entering their sophomore years. Catherine has returned to Kenyon College last week. She has a job in the film department and thinks that film might be her major. And Char heads off to Northwestern University as a transfer student — perhaps majoring in theater and computer science. Hayden had a great summer making beats and teaching at Horizons at St. David’s summer camp. He was an Italian and music major at Wesleyan and has begun looking for a job. We love watching our kids grow into young adults. They are and have always been our front and center — the heartbeat that we dance to.

One more side note: On this year’s Labor Day, I want to thank the unions that my husband is a part of — the SAG-AFTRA Union and Actors’ Equity. Our family gets our health insurance through SAG-AFTRA and it has always been a great comfort to have such a strong union supporting our family and, especially, Chris.

Extraordinary Meal Planning

I stave off uncertainty by systematizing.

We have always been very loose about dinner times and meal planning. But we always aim to sit down to dinner together.

Since this school year’s launch, we have set a goal to eat dinner at 6:30 every night. And now we have a dinner plan:

  • Meatless Monday
  • Taco Tuesday
  • Prince Spaghetti Wednesday
  • Comfort Food Thursday
  • Fish Friday*
  • **Clean the Refrigerator Saturday
  • **Sunday Supper

*Friday might be pizza. (The kids don’t like fish).
**Saturday and Sunday might be FFY, Fend For Yourselves. 

So far, so good.

Chris loves to eat but he takes forever to cook. And he is a messy cook. So having this schedule get keeps him moving and motivated. (I think the Parkinson’s meds have affected his executive function/planning.)

Besides, the kids are starving when they walk in the door from various afterschool activities at 6:30 pm. (They leave the house at 7:35 am — long day!)

Last night, it was FFY, because the girls and I went to see Pippin on Broadway for their birthday. How fun was that! The understudy was on and I can’t imagine the real lead, Kyle Dean Massey, could be any better than the understudy, Mike Schwitter. (Chris’s friend John Dossett played the king! Other highlights: Rachel Bay Jones as Catherine and Lucie Arnaz as Grandma Bertha.)

I think the message of the musical is find the extraordinary in your ordinary.

It’s a highlight of the day to eat dinner together. It’s the ordinary.

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