Note to Gary's Hospice nurse, trying to document decline and keep him on Hospice care in spite of Medicare's new guidelines for diagnoses that ultimately kicked him off:
I just wanted to document some of my text messages to you, and add to them in an e-mail to contribute to the record of Gary's decline. I'm hoping you and the doctors have made the opportunity to become more familiar with Lewy Body Dementia? I've attached a helpful brochure that shows more detail on the nature of his disease. This brochure should help you immensely. It even covers his constant constipation. He has sincerely experienced all of these symptoms over time, including sensitivity to medications, as in his adverse reactions to Risperdal and Seroquel. Thankfully, the Zyprexa continues to agree with him.
I have several examples below, and will continue to document with you to assist in his care:
On Friday the 12th of July in the evening, Gary told me he hadn't spoken to our daughter Sami in a couple days and she had called and spoken to him at about 1 that afternoon. Our daughter Samantha is the absolute apple of his eye. He's never forgotten her visit or phone call before. I was deeply saddened at this development because of what it means for the progression of his disease process. He had forgotten who I was about a month ago, though I'd been sitting with him for over an hour when that occurred, but this was the first time involving our daughter.
On Saturday the 13th, Gary had spaghetti for dinner and was not clearing his mouth before each bite. He could not cut it enough to get it on his fork. His belief in his abilities is greater than his ability. For cutting his spaghetti I'm meaning he couldn't even cut it with his fork.
Gary's fluctuating cognition and abilities are caused by his disease. His decreasing ability to follow instructions on transfers is caused by it also. I know you said you have watched his transfers. As you've witnessed, it is very difficult to move him, because most of the time he has extreme difficulty coordinating his movements to assist, and most especially in the evenings due to his sundowning that's only being combatted by his medications. Even helping to shift his weight in bed, on a recliner, or in the seat of a vehicle (as Sami and I experienced on Saturday the 6th of July when we brought him home for a visit) is impossible for him. You have to make it happen for him. Also on that visit, we had to remind him several times to stay seated in his recliner when attempting to watch TV for an extended period of time. He would tell me he was going to get up and walk around, which we both know he hasn't been able to do since he's been on Hospice, but he can never remember that, and has no common sense or wisdom.
He has no improvement in any area except he is putting some weight back on. Everything else is getting worse. Have you also considered that he could be losing his ability to understand his appetite just as he can't correctly judge the size of a bite or the wisdom of continuing to stuff his mouth when he hasn't swallowed yet? I can't begin to tell you how many times I've had to remind him to swallow before taking another bite, or watched him hold fluids in his mouth for an extended period of time as he figures out how to swallow it.
He was delusional on Sunday night, the 14th, confusing his folded newspaper with his glasses case when unable to get his glasses into his shirt pocket. He also could not control his facial muscles enough to keep his mouth closed all evening. I also gave him a manicure that night, and he couldn't follow my instructions to wash his hands including under his nails. He would just sit with his hands near the faucet and I had to scrub and push his hands under the water to rinse.
We both know his decreased incidence of falls is us and the facility making changes--keeping him from being alone in his room, and constantly staying on top of him to remain seated or laying down. The fall prevention has nothing at all to do with improvements in Gary's cognition, common sense, or abilities.
In order to remove him from Hospice when his diagnosis is Lewy Body, you'd have to show his dementia is not getting worse, correct? When we talk this week, let's discuss what will be considered decline for Lewy Body Dementia. I firmly believe that over the next few weeks, you'll get the best indications of Gary's fluctuating condition if you are able to visit at different times of day. He is nearly always most confused and delusional toward the end of the day, and you'd also catch more of his swelling issues toward the end of the day. Both his ankles, and especially his left ankle and foot, are swollen every day. You and Dr. Singh aren't seeing it because you are there early in the day.
When the doctor re-evaluates him to continue on Hospice, they will have to take the fluctuations into account, and not just evaluate based on a single, one-shot visit. There is no way Gary's dementia is improving and I will continue to help you document decline as we progress through each benefit period.
Based on everything I share with you here and over the coming weeks, I will not ever accept that Gary is improving and should therefore be removed from Hospice. He is terminal. Nothing will change that. Changes in his care routine and methods should not play against him in his Hospice renewal.
