@memoriestomoments It sounds as if you are doing everything possible to alleviate Gary's discomfort. He is blessed to have you at his side loving him and doing what needs to be done. It is a really difficult situation for you as well as him because there is no care plan that fits every dementia patient and their specific issues. It is a trial and error mission. I think it is not unreasonable to hope to find a medication that will relieve his pain but it may come at the cost of sedating him which may help with the sleep situation. It might be helpful, if you are not already doing this, to keep a log with the help of the watch, of how much sleep he gets each night so you can share that with the gerontologist and neurologist. Also his level of discomfort as best you can determine with his help. I think it must be a simple scale, not the 1-10 we use in the medical field. Maybe a "little discomfort/pain", "more than a little," and then "a lot." He may not be able to grasp what you are saying if his cognitive function has
declined. With my husband I have to use visual clues to get my question/message across
because his ability to grasp the meaning of what I am saying has declined. He also has chronic back pain for which his pain management physician has prescribed hydrocodone 5mg/acetaminophen 325 mg. It seems to be an effective dose. I would also include the location and approximately how long it lasts. Anxiety is a common symptom of dementia since I think the person feels on some level that things are not right. He may not be able to express it and that causes his distress and anxiety. I think consulting with the gerontologist is a good idea. She/He may have more insight as she/he deals exclusively with older people among whom dementia is increasingly common. With dementia, more accurately called brain failure, the entire brain is failing. Which areas will be affected first may vary from person to person but they will all at some point be diminished. For example, my husband has lost his peripheral vision and now has what is called binocular vision, he only sees what is directly in front of him. I know that at some point he will stop eating and drinking though he may have swallowing difficulties before that. Right now he chokes sometimes when he eats. He sleeps all day, only gets up to go to the bathroom. He will begin to sleep more, eat less and have a harder time communicating. My plan is to make everyday that I still have him count. I give him pain medication whenever he says he has back pain. Sometimes I have to ask him "how is your back today?" because he will not tell me if I don't ask. I tell him every morning that I love him and he is the best thing that ever happened to me. I also reassure him that I will always be at his side and together we will face what ever the future holds. To me the quality of his life is my top priority, not the length. I have a pretty good idea of what will happen because of previous end of life caregiving for my parents and have been an RN for over 50 years. I know that I can handle the physical caregiving but the grief and loss of the love of my life will break my heart for sure.