I have no alone time

I never found notes helpful. When processing information is impaired….my loved ones couldn’t process it. Or, the information is forgotten shortly after being read.

People with dementia often dislike new places because they fear forgetting information. New faces are hard to remember, they forget their own info….it’s scary, so they avoid it. What if you went with him to the senior center at first until he got comfortable. Then, leave for a few hours?

Having your own privacy and time to recharge your batteries is important. I think getting it accomplished can be challenging. In my experience, the person who has dementia is rarely going to say okay, I’ll cooperate and do what is helpful. So, at some point, they aren’t able to make the decisions. Decisions are made for the family’s best interest, including theirs, and they are required to comply. It’s for health and safety.

At times, my mom tried to reason with my dad about things he and the family needed. Sometimes, he would seem to understand and agree, but then he wouldn’t and would protest. Like when he protested home health care coming into the home to help with care and household chores. He was adamantly opposed, but he and the family needed it. His doctor strongly encouraged it. So, our family met and told him the decision. He was very unhappy, but it was started. Initially, I had to stay with him the entire time to calm his protests, but it was still done. Eventually, he grew fond of the help aids.

There were also challenges when we took car keys, medication management, etc. but it was imperative. Safety was more important and patience was required to protect him and others. The regular, sometimes constant need for attention and resistance to care are some of the reasons placement in a facility is considered, imo,

I hope you can find some suggestions that help. Online support is very helpful, imo.

Since he was a busy worker, assign him a simple, rotating "job" or task for an hour a day (like folding laundry or wiping counters) to give you guaranteed alone time.
Instead of just notes, put the answers to his repetitive questions on a large, clearly visible whiteboard that he can check himself. When he follows you, try redirecting his energy by offering to look at the photo album or old paperwork together, which can satisfy the need for connection

I recently enrolled my husband in a Respite program at a local church. It is available Monday-Thursday from 10-2. It is not a day care. They have daily programs; music enjoyment, chair exercises, arts and crafts, outside guest, and they enjoy eating lunch together. My husband only goes once a week for now. I was afraid he wouldn’t like it, but have found the opposite to be true. He told me he feels very comfortable around others that are facing similar daily challenges. He enjoys it. I am so glad because even just 4 hours a week on my own has been so helpful to me. I usually run errands, buy groceries or just come back to the house and do some cleaning out of things he has hoarded away. You might want to look into that and see if your area has something similar.

I have found a large dry erase board on the fridge with his daily schedule hour by hour of activities for my husband is very helpful. I change the day and schedule each day so that is the only focis on the fridge is that schedule and he returns to it all day to check what to do next. My notes I used to place everywhere were never read but this works well. The day of the week schedule is moved up to top of fridge as day moves through the week.
He also has activity books to “work” on at his desk, including crosswood puzzles and these can keep him quietly busy for hours. I started with crosswords from education websites that were free to print with “word banks” and then found others at a lower age level on Amazon

My husband also has speech aphasia and he will work on books like attached which he does well

Book

I saw the same thing happen with my neighbor, who's husband was in major denial over his wife's MCI. HOwever, her MCI had advanced to where she really needed companionship, as important for her as for him, in just having time for himself. I know we want to keep the peace with our spouses, but sometimes, we have to as caregivers, know when enough is enough for us. As the quality of our care will become compromised. So I've decided that when the time is right, I am going to bring in the services my husband needs. My mother didn't have MCI, but had cancer, and I remember how much she fought me when I had to bring someone in from Elder Care to help her since I lived out of state. During the middle of it all, she kept telling me that she found the person, that she brought them in, and that they were her friend, not mine. I guess I accomplished what I needed to do, where she was so comfortable with it, at the end, that she was happy with it. I suspect that companionship for my husband along with whatever stepped up health care support he may need down the road, will be good for him and for me.

This is such a tough situation for you. You absolutely need time away from caregiving to restore your soul. Following you around is typical behavior for someone with dementia. You represent safety and home. Your husband can't understand the big picture aka -your needs because of his dementia. Sometimes you just have to do what you have to do to protect your sanity. Maybe having someone come for a couple of hours with the explanation that this person is there to help YOU with your household chores eg laundry, clean up the kitchen, organize the pantry, whatever. So that it is not about him but something to help you. For instance: So and so is coming today to help me________, while they are here I am going out to__________. I'll be back at________. Maybe this might work. I think that we must prioritize our health and sanity to be able to do this job long term. I highly recommend learning as much as you can about dementia to help you realize how "brain failure" can affect behavior. The Alzheimers website has many helpful resources as well Teepa Snow's website: "Positive Approach to Care". I have learned so much. I didn't know that people with dementia often lose their peripheral vision so they can only see what is directly in front of of them.