10-26-2021 Guess who is a Type 1 diabetic?

(Tricia)

Marilyn said that it was quite the morning today. Linda’s bloodwork came back, and Dr. Ramanathan had called it: Type 1. It was all hands on deck. As Marilyn was walking out this morning, she came across the doctor talking to several NHC staff, saying “That woman cannot continue to live like this!”  Marilyn guessed that they might be talking about Linda, and she was right. The doctor called her over and brought her into the conversation.

According to NHC’s doctor, the way they were giving her insulin will stop immediately—apparently, that was doing her no good (understatement). NHC’s doctor will now work with Dr. Ramanathan to come up with a new more regimented treatment plan. Unlike Type 2 diabetes, Type 1 diabetes is not affected by a person’s diet, weight, or lifestyle. It is an autoimmune condition that requires a different type of monitoring and insulin administration. But as I said in a previous post, doctors are often highly unlikely to suspect Type 1 in a senior adult.

To top it all off, Linda’s C.diff infection has also recurred (or never left), so the doctor is trying to figure out a way to treat it without another course of antibiotics. There is evidence, she says, that a microbiome transplant can be a very effective treatment—it might sound unappealing, but apparently, has worked wonders for many people in Linda’s condition. The doctor plans to work with a gastroenterologist that she knows to try to make that happen.

...so....NOW she’s going to pay attention to Linda’s diabetes. NOW she’s going to consult with a gastroenterologist. NOW she’s going to involve us in her care. Not a few weeks ago, when Linda’s suffering had become particularly acute. Now. I’m not sure I can find the words adequate to express how angry I am by that. 

I am so fed up with the healthcare system. There is so little attention paid to preventing medical crises—most doctors only react when a patient's medical condition reaches a crisis point. Why IS that?

That said, the one positive aspect of this whole scenario is that at least the medical staff at NHC are paying attention! This afternoon, I spoke with the dietician at NHC about how we can provide Linda with food that she will actually eat (she often refuses to eat when the food is unappetizing, and so she is losing weight); I also called the case worker, who set up a phone conference with the doctor for this Thursday, so that we can be clear on what the next steps might be.

But the negative aspects are many:

— Linda’s C.diff infection means that the appointment that I made for her with another gastroenterologist, set for this Thursday at 1:00, will likely have to be canceled. For the second time.

— The infection and Type 1 diagnosis means that our plan to move Linda to a new facility is likely on indefinite hold. Tomorrow we are taking a tour of Sunrise on Clayton so that Marilyn can see the facility, and we had planned to start the process of moving Linda there. But we now do not know whether it’s wise to move Linda just as her true diagnosis is known.

— Linda’s Type 1 diagnosis means the medical system has failed her again and again for the last several years. Had she known she was Type 1 and had she been provided with the proper treatment plan, she could have avoided going into a diabetic coma in the first place. 

— Her new diagnosis also means that most or all of her frustration over being unable to manage her condition was misdirected. During moments of lucidity, she has said several times in the past few weeks that she thinks that this was “all her fault.” But we now know she could not have managed her condition on her own with the tools that she was provided.

Meanwhile, I had an appointment with Linda’s attorney this afternoon—yes, Linda’s attorney! With no power of attorney in place, I have been working with the help of another attorney to seek guardianship so that we can manage and pay for Linda's care going forward. The actual guardianship hearing is next week, but in these situations the court also assigns representation to the person for whom guardianship is being sought. This has been a long and costly process, so I urge anyone who does not yet have a POA in place, please do it now! That piece of paper can make it so much easier for your loved ones if you find yourself in a similar position. 

So, today was obviously an important day in many respects—we will continue to keep everyone posted as things move forward. As frustrated as I am with the senior medical staff at NHC, I agree 100 percent with its doctor on one critical point: Linda cannot continue to live like this. We will continue to hope that all of this brings Linda one step closer to regaining some independence, good health, and quality of life once again.