3-12-2022 Linda won't participate--we're at our wit's end

 (Tricia)

I realize that Linda's situation isn't as bad as it could possibly be--but it certainly seems close to that. She has specialists coming to see her regularly--orthopedics, infectious disease, cardiology, and endocrinology. They are tracking her vitals, the healing of her incision, her heart rate, her blood sugar. But none of them can help her--or us--overcome the most detrimental condition of all: Her brain injury. Her brain injury continues to override her decision making, lower her pain tolerance, and cause her to distrust the doctors, nurses, and therapists trying to help her.  

I was at the hospital earlier today, when the orthopedic surgeon came to see Linda. When he moved Linda's leg only slightly, she screamed in pain and started sobbing. He came around to the end of the bed and said to me quietly, "Her hip is healing well, and the incision looks perfectly clean. There is no sign of trouble. And, in any case, I only moved her knee, not her hip, which shouldn't have caused much, if any, pain. I don't think it's the actual pain that's driving this--it's something else."

He also told me that if Linda does not get up and start doing therapy, the hip could freeze in place, so that she will not be able to use it all. Moreover, all the doctors are emphasizing to us the importance of her moving just to maintain her health in all respects. If she refuses to allow anyone to get her out of bed, it's likely that other systems will deteriorate as well. But he left us with few options. When we try to explain this to Linda, she tells us that if we loved her we wouldn't be doing this to her--or worse, she simply shuts down and looks away. 

The nurses also tell us that one of them might turn her or move her and she will be perfectly agreeable, but another will go in later to do the same and she'll begin screaming that they're hurting her. They have admitted that they really don't know what to do.  

Once the ortho surgeon left, the hospitalist came in soon after and told me the same thing. "If someone could develop a drug that gave people willpower and motivation, that person would be incredibly wealthy," he said. "But we don't have that drug, so this is going to be up to Linda. If she develops the will to do the therapy, she has a shot. But if she continues to go down this path, it's most certainly not going to end well."

Our main hope now is for the insurance to agree to cover Linda's therapy in a long-term acute care hospital. I spoke to the admission director of the LTACH that's located in Missouri Baptist, and she told me that their therapists work with patients who have brain injuries like Linda's all the time, and that they have ways of sweet-talking patients into therapy little by little. But if the insurance refuses to cover care in an LTACH, like they did the last time, I don't know how she'll get the help she needs.

A brain injury like this has got to be one of the cruelest injuries a person can sustain. If Linda would participate in therapy, she would likely be up and walking with a walker within a week or two. But at the moment she is convinced that she does not need to do it, and she wants no part of any of it.

All of this is incredibly depressing and has left me feeling more hopeless and helpless than I've felt since the very first weeks of Linda's coma. I feel as if we're running out of options.

When Linda was last in the hospital at BJC St. Peters, the hospitalist there had set up a follow-up appointment for Linda with a primary care doctor. The intention was to have someone who would be overseeing her care and helping us put all the pieces together. But once Linda's hip got infected, we had to postpone that appointment indefinitely. However, I'm going to call that doctor's office on Monday to see if she might have any suggestions regarding what we might do to work around Linda's mental state. Maybe she will have some helpful advice or a referral. Maybe insurance will come through on the LTACH. Maybe we'll find a therapist who has just the right approach, tone, and attitude that can get through to Linda.

Maybe. Right now, we can only wait and see.