The BLINDSIDES

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
Thank you for the itinerary for Greenland! I really appreciated your step-by-step approaches and the suggestion of seeking out Teepa Snow resources. You show such great compassion for your loved one—encouraging to hear!

@japlok this is so true and great advice. Also, I have to remember to keep information back until it is a known fact or upcoming event otherwise he can obsess and ask relentless and repeating questions about something that might not ever happen. I get enough pointless questions about anything and everything that pops into his mind. It’s exhausting! “I’m not sure “, “I would have to look that up” and “I don’t know” are frequent phrases that I use to try to end the constant questioning over senseless topics.

I have read and processed all of the responses and I am so grateful for the kind words, great advice and the sharing of your own experience.

I have worked hard for the past few weeks in controlling our environment 100% of the time; failing at times, but remaining persistent.

He is confident enough to know that when I did have my last meltdown he needed to be more patient as well.

Sometimes that works, but really what works is me being in control of myself and our environment. I only give him one topic at a time; I am making notes and hiding them on my desk; when things are calm and smoothe, I will bring up the subject of a note and make sure we have handled whatever it is, in its entirety, before bringing up another issue or task.

It’s working for now.

We nearly had an incident the other day when his daughter called me on my phone, because he was not answering his, to tell me the expected passing of her sister from cancer had occurred. My husband was making his breakfast, so i just continued listening to her through her sobs… I was so frightened.

I should have hung up and prepared him for the call, but instead when he was settled down to eat, I said, “your daughter is on the phone, she needs to speak with you.”

She needed him. She doesn’t understand, as most people don’t unless and until they live through what we are all going through.

I could hear him showtiming.. he told her he had just talked to her a couple of weeks ago (he texted her 3 months on Xmas day and said “Merry Christmas”) and she had said to him that she was fine, doing great. ( they haven’t texted about her health in a long time).

He knew to say he was sorry and I feared the aftermath. However, he seems to have put this in another part of his brain. Not one tear for a daughter?

I have never met her, as we lived on opposite coasts, I knew her through texting and phone calls. He hasn’t asked about their young children either.

I guess I am experiencing grief for all of them, including him.

Apathy?

It’s interesting how this has turned into “does he have dementia?” to “is he understanding what’s happening?” or”why did he say or do that?”

@dig2dye2 I am so glad that you have found some ideas that are helpful to you! The small “wins” are huge in this journey.
I was sorry to read about the loss of your step daughter, and having to carry that loss for him as well. It is odd, the reactions one would expect are rarely what you get in this disease! You are doing great and I was inspired by your note and the care you have given.

Blindsides; I think that's what I was going through yesterday confused by it all with my husband. This disease is so baffling. one minute they appear okay; then it comes, subtle changes in the face, blank stares in the eyes, memory tripped up, meltdowns that lead to "stress" now his annoyance to anything high pitched with hearing, while I'm driving, the anxiety he has with any traffic situation, more stress, and now what appears to be some quirky movement with his mouth. It's hard to know but as caregivers, we are on alert, constantly. He's on lequembe his 14th infusion, and worried it's not working, but what does that really mean? Up, Down, Up, Down. This disease brings on constant fear. He goes for his MRI today, hopeful that the infusions are working, fearful that they may not be. I read Psalm 37.23 this morning......It is seeking God's direction and company that we find abundant life. God will get us where we need to go. God please help us, as we need your guidance every day, to follow your light.

Blindsides; I think that's what I was going through yesterday confused by it all with my husband. This disease is so baffling. one minute they appear okay; then it comes, subtle changes in the face, blank stares in the eyes, memory tripped up, meltdowns that lead to "stress" now his annoyance to anything high pitched with hearing, while I'm driving, the anxiety he has with any traffic situation, more stress, and now what appears to be some quirky movement with his mouth. It's hard to know but as caregivers, we are on alert, constantly. He's on lequembe his 14th infusion, and worried it's not working, but what does that really mean? Up, Down, Up, Down. This disease brings on constant fear. He goes for his MRI today, hopeful that the infusions are working, fearful that they may not be. I read Psalm 37.23 this morning......It is seeking God's direction and company that we find abundant life. God will get us where we need to go. God please help us, as we need your guidance every day, to follow your light.