The Way It Is

CAREGIVING: This afternoon Jennifer from Greater Springfield Senior Services (GSSSI) visited to talk about how things were going and  to line up more help for Kathy. I had just hung up the phone with Louis & Clark, the medical supply firm that had provided the transport chair. They were having trouble getting reimbursed from Health New England (Kathy’s Medicare Advantage insurance) because I had signed the physical therapy evaluation forms instead of Kathy. I have power of attorney for someone who has dementia and usually doesn’t sign. But they don’t see that on the forms that they have. So I have to straighten that out. Meanwhile, Kathy was waiting for me to hang-up because she was sitting on the toilet. She wanted to make sure she peed before my meeting arrived. I was just cleaning up Kathy when the doorbell rang, Marty started howling. I rushed Kathy into her chair. Rolled her to the couch. Ran downstairs holding Marty back. And let Jennifer in. When we got up to the kitchen she said I looked burnt out. Once i explained the last three minutes she understood but it probably helps to look a little frazzled.

She said hi to Kathy and we started talking in the kitchen. A lot was new since the last visit. From the stairlift to her overall condition, Kathy needs help doing everything: from showering, incontinence issues, to feeding and moving her. Jen was going to try to increase the help we are getting from GSSSI by a lot. She threw out the idea of having someone come four mornings a week to do showers and light cleaning. She would increase the companion care from 90 minutes to three hours. The downside of that plan was that Dilcia wouldn’t be helping out anymore. I thought that might overwhelm Kathy if that much was thrown at her at once.

So she is going to check on getting the shower help for just two mornings a week; companion care for three hours on Wednesday (so I can run errands or get out of the house to get groceries); and try to switch Dilcia’s two hours to Saturday (so I can do errands like go to the dump for recycling). Could work out well. Dilcia might decide to move on, anyway. Jennifer told me that to get the schedule working better, the aides may have to change. It’s the way it is.

I tried to ask if all of this was paid by her insurance, but it turns out GSSSI is all state money. But the VNA was Medicare/insurance and she was surprised that we had services from them. Normally visiting nurses come after a hospital stay, or a fall or some event like surgery. It got a little confusing because I didn’t request it through her primary care doctor. The Huntington’s Program at UConn referred them. She told me that VNA services are generally short-term. It wasn’t the insurance being nasty. So now I know. It’s the way it is.

Jennifer was saying if we get Kathy’s units of service (hours) up to a certain level then she will be in a different program where there is a bigger pool of money to go around. That’s good. But a different case manager would start coming. I start to get nervous because I get used to a certain person but again, it’s the way it is. Different program. Different expert.

She asked if there was anything else?

So, I started to ask her a question. I said, “This is a question about etiquette, I guess. Is it ever OK….”  She cut me off…“NO. Never. Don’t do it.” She knew what I was going to ask! Is it ever OK to give an aide extra or a tip or a gift. I was thinking because Dilcia is getting married was it ok to give something. Apparently it is strictly forbidden because it sets up expectations. Also they aren’t supposed to give us anything either. She told me one of her clients wanted to give her aide her car. No way. Keep it professional.

It’s the way it is.

MUSIC: This is Wait by the band bent cousin, from the UK. They are considered post-punk or cute-core or something like that. Pat and Amelia Innit sent me a demo of this song and asked me if I would like to try it and they were kind enough to allow me to add it to my fundraising arsenal. I played and sang everything on it.  All proceeds go to our UConn clinic.

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