This week in guardianship

A bumpy and winding path

So … this week there were some significant shifts in our journey toward figuring out appropriate care for Mom. But before we get to that, I’ll just say that I’m still waiting for a call back from legal aid - I’ve already signed releases so they can check into the case … but we’ve still not been told whether they can officially represent Mom. (the next status conference is July 22 so I’m feeling the pressure) Also, Mom’s case manager was on vacation this past week. Add in the July 4th holiday Friday, and you guessed it … not much could be done.

The good news is that after a long difficult struggle with pressure sores, a new treatment plan was started about 2 weeks ago which has resulted in much healing for Mom … so much so that she no longer needs to have home health come twice a week … or at all even. The care staff where she lives will continue to apply special skin lotion for her and the sores have healed over. Without seeing pictures, it’s hard to imagine this (because of the last pictures I did see which really disturbed me). But, being signed out of home health and seen by a total of 3 nurses … it seems likely that this is true and a real reason to celebrate. Mom says she feels much better too.

In other good news: Mom was reevaluated by the Medicaid RN Thursday with my brother (Mom’s other co-guardian) present and she was found to have NOT ONE single qualifying factor for needing nursing home care. This is really good news … while at the same time ALL of us are really puzzled … it’s a heads reeling sort of moment believe me. All signs have pointed toward nursing level care being the most logical next step due to the sores that would not heal, her exhaustion and needing so much help with so many activities of daily living. It is harder for me to gauge over the phone what has led to what appears to be a miraculous change … but it is confirmed by my brother and by the RN from the state. When I tried to call Mom Friday she didn’t pick up so I am hoping to talk with her today.

I think this is a good example of how much like a roller coaster this experience has been for me anyway and I believe for others involved as well. How could Mom go from needing nursing level care (this is what we were told repeatedly by staff at the residential care home) to not having a single qualifying factor just a few weeks later? Could mental health issues have driven the exhaustion? Could that also be why she’s uncharacteristically energetic and “up” now? I just can’t know for sure. I have advocated for appropriate (more) medication in the recent past but it didn’t happen because of issues having to do with fall risk and side effects due to Mom’s age and overall health. But, I know that episodes can come and they can go … quite dramatically. Beyond just a general understanding combined with history … I really don’t know for sure.

Meanwhile, there is the status conference (in preparation for the appeal hearings) coming July 22nd, burning questions in my mind about whether or not she can just stay at her level III residential home now that her sores are better and she has NO qualifying factors for nursing level care. Maybe they will say the daily lotion exceeds their license I honestly don’t know. And, it’s very upsetting to me that we are “in appeal process” or litigation you might say over challenging the denial for Choices for Care Medicaid … AND challenging the involuntary discharge …. and now there has been this sudden appearance of improvement. Things could have already changed as I type this. This is the type of confusion I’ve faced often over the past 10 years. If I could have what I’d like - this could be resolved without legal hearings.

Setting aside the looming federal Medicaid cuts completely and even if I assume that Mom and other seniors in her blue state will still be able to receive the care they need …. I still feel like I’m in a pickle. I must proceed in resolving the involuntary discharge. My heart says that this should be resolved at the lowest level on the “chain of command” possible. But, for more than a year now we’ve been warned about Mom’s changing level of care and the signs have been clear that she would eventually be forced out of the residential care home … and we’d have to find other arrangements. Discussion recently started about a 3rd option: a higher level III care home if one even exists … and in exploring those and talking with administrators at those homes … I ran into something called ERC Enhanced Residential Care …. which I was told she’d still need the Choices for Care clinical certification for (and spoiler alert = she’s not getting that now anyway). Moving her to another facility much further away from family (she’s already in a totally different county and an hour to an hour and a half away from home) seems so wrong. The upset it would cause her and us … even if we are lucky enough to find a place that has an opening AND will accept her diagnosis and care needs … well it’s something that is hard for me to process. (I no longer can carry furniture so I feel I’d need to pay for help for my brother … just to mention one worry). It is likely we’ll have to continue with the appeal of the involuntary discharge with or without legal aid.

My other personal concerns center around when to make a trip … and dealing with two health red flags of my own. I’ll get to see a cardiologist July 17th. The other concern is not one that I’m likely to ever handle the way my doctor has “ordered” me to so I’m refraining from discussing it and I’m taking actions to be as healthy as possible and alert to any changes needing my attention. Sorry to be cryptic but I have a way I want to live in this world and I don’t feel I owe my doctor or even my family a turning over of my body to the types of things I don’t believe in. Manuel is supportive and on board with how I wish to deal with things.

I miss home + my family terribly and I hope to go to Vermont by October. At the same time, I’ll admit I’m not going to fly willingly right now with the current aviation safely concerns and with the ICE and homeland security f-ing madness happening. Even with my passport card. I waver back and forth between extreme sadness and high level anger and rage. I wonder how on earth I could even get Mom here (should it become the only option) to take care of her given all kinds of practical considerations … even if I could hold up to that level of 24 - hour supervision/care she would need (in addition to my current challenges). My mind bounces around to small details like how I tried to get her to get her ID renewed and it just didn’t fly so she has expired ID and documents probably split between her residence and my brothers. She can’t fly without a Real ID. She doesn’t want to come to Texas anyway but my brother works full time. She has not felt up to going to a local one hour hearing evaluation much less riding the hour drive up to get her ID card done. Just two weeks ago, Mom told me she was having trouble holding her head up and she wasn’t even sitting in her chair.

This is not a poor me post though - at least I hope it’s not. I just feel like the pressure inside my mind has to be let out… vented somehow. Because tomorrow, there are medical bills to sort thru for Mom, things she needs me to order, the case manager will be back, I am still awaiting a conversation with legal aid and I must figure out how to open a brand new conversation with the residential care home administrators about what is now possible given Mom’s change of wellness for the better. Plus I’m still preparing for that status conference July 22. I have learned that taking time to let things settle is valuable … because things can change before the ink dries I realize that.

All I want is appropriate care for Mom and peace of mind for all of us. It’s perhaps a tall order in 2025. I’m not living in fear … AND yet I’m unable to leave reality out of the picture when taking action lately. That said, I do have faith that we will all get thru this somehow as we have all the other days of our lives thus far. -30-