The BLINDSIDES

@kjc48 please let us know how the MRI goes. My husband is on his 6th Kisunla infusion and will have the diagnostic MRI after the 8th.He is in the very early stages of AD and it is very frustrating to not really know what I'm seeing as far as any deterioration. Sometimes it seems as though the forgetfulness and confusion in conversations is just an extension of what has been going on for a number of years and I always attributed to ADD/ lack of attention/distraction. It is so hard to quantify! Wish there was a definitive cognitive test we could do every 6 months or something to measure any changes.

My husband is at the tail end of moderate dementia. We left MCI early last year. He can no longer have a conversation that involves an exchange of ideas. He can only make simple requests like "more milk" if he can remember the noun milk. Sometimes he just points to the cup. He is at the point where he cannot remember the names of things or places, basically all nouns. Visual clues are very helpful at this point. At this stage I only give him as much information as he needs to know and keep requests simple. He sleeps most of the day, except to get up for a late breakfast and then again for dinner. If say dinner's ready, let's go eat, he will respond that he's not hungry. But if I ask him to please sit at side of the bed and extend my hand,( visual clue), he does that. I give him a quick back rub and a kiss and then say come with me into the kitchen. Sometimes he asks me why so I say because I have something for you there that I think you will like. I don't tell him it's his breakfast because he will say he's not hungry. Once he is in the kitchen the table with the food on it gives him a visual clue to what is happening. He always sits down on his own and will eat what he sees in front of him. He cannot process more than one or two sentences at a time and I have to wait in between sentences to see if he has grasped what was just said. I think that cognition in dementia patients is diminished in the late afternoon and evening. Their brains have been working hard all day and are so tired that some experience what is called "sundowning" I have learned so much about dementia and how we can positively care for our loved ones (and ourselves) by recognizing what abilities they still have and working with those skills instead of trying to get them to do something that they are no longer capable of doing because of their brain failure. I highly recommend Teepa Snow's Positive Approach to Care. She has on line online courses that you can take that will teach you so much about the various types of dementia and more importantly for caregivers, what the various stages are. With that knowledge you can have a plan and know what to expect in the future. I compare what we caregivers are experiencing to getting on a plane thinking you are going to Hawaii and then you get there and you have just landed in the Greenland. It would be very helpful to have an itinerary and visitors guide when you landed to show you that even though you are not where you wanted to be, there are still things to do and enjoy in this different place.

@ocdogmom

Your response is amazing.
You have a gift many of us may not have.
I wish I could be as gifted as you!

Do you have anyone come in to give you a break?
Do you have any support systems in place besides your terrific perspective?
Do you have friends and family you can talk to or get help from?

My husband is at the tail end of moderate dementia. We left MCI early last year. He can no longer have a conversation that involves an exchange of ideas. He can only make simple requests like "more milk" if he can remember the noun milk. Sometimes he just points to the cup. He is at the point where he cannot remember the names of things or places, basically all nouns. Visual clues are very helpful at this point. At this stage I only give him as much information as he needs to know and keep requests simple. He sleeps most of the day, except to get up for a late breakfast and then again for dinner. If say dinner's ready, let's go eat, he will respond that he's not hungry. But if I ask him to please sit at side of the bed and extend my hand,( visual clue), he does that. I give him a quick back rub and a kiss and then say come with me into the kitchen. Sometimes he asks me why so I say because I have something for you there that I think you will like. I don't tell him it's his breakfast because he will say he's not hungry. Once he is in the kitchen the table with the food on it gives him a visual clue to what is happening. He always sits down on his own and will eat what he sees in front of him. He cannot process more than one or two sentences at a time and I have to wait in between sentences to see if he has grasped what was just said. I think that cognition in dementia patients is diminished in the late afternoon and evening. Their brains have been working hard all day and are so tired that some experience what is called "sundowning" I have learned so much about dementia and how we can positively care for our loved ones (and ourselves) by recognizing what abilities they still have and working with those skills instead of trying to get them to do something that they are no longer capable of doing because of their brain failure. I highly recommend Teepa Snow's Positive Approach to Care. She has on line online courses that you can take that will teach you so much about the various types of dementia and more importantly for caregivers, what the various stages are. With that knowledge you can have a plan and know what to expect in the future. I compare what we caregivers are experiencing to getting on a plane thinking you are going to Hawaii and then you get there and you have just landed in the Greenland. It would be very helpful to have an itinerary and visitors guide when you landed to show you that even though you are not where you wanted to be, there are still things to do and enjoy in this different place.