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.
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.
3 thoughts on “Family Update”
Oh MB, Sorry you and your family have to endure such trying times but the love and care you all exhibit toward each other is amazing. (So we’re NOT worried about you!) Please know we’re keeping you all in our prayers. Hope you find a wonderful place for Chris. Somewhere where he can be as independent and creative as he chooses while being comfortable and safe. Good luck to Hayden on his career search and to sophomores, Cate and Char. When is Charlotte coming to NU? Are you coming then too? If you do, know you’re welcome to stay with us. Love, Terry
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Hi MaryBeth. I’m so sorry to hear about your husband and Dad. My thoughts and prayers are with you! Barb
I have Parkinson’s also, so I understand the challenges you face. Chris is in my prayers.