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My wife, in the begining would also constantly walk, turning lights on and off. This was the begining of using some stratigies on my part. Because no one came to our rescue. I decided to forgo trying to get her to sleep. Instead I would unscrew light bulbs in my bedroom. She would not enter into darken room, she would just reach in and flip the switch on and off all night. {But in looking back on this I realize that she didn't do this during the day when I was up with her.} Lights would be on in kitchen. Well that evolved into opening the front door and heading out. Thankfully we have a security gate that she could not unlock. So she started throwing stuff from house an toss over gate into yard. Purse, umbrellas or whatever. So I inturn drilled a hole into door that let me put a large nail in to stop door opening. I then discovered that after a week or two she would stop trying to open the door which tells me there is some reasoning taking place. The biggest help for this non-sleep is to discover what is motivating the behaviour. For us it was mirrors or things like picture with glass where she could see herself. That to her is someone else and she thinks its another room not a reflection. I think a part of her is afraid knowing "something" is happening to her. I also child proofed the kitchen and bathroom cabinets to keep her from stupidity. The door to our garage has two locks with one reversed so it requires a key to leave or enter. Another thing I noticed that as the inability to do stuff happens, they stop. She no longer will lay down but rather sleeps sitting up. I stay up with her until I know she will not need the bathroom for a while. Her on couch me in bed. A small amount of liquid tyenol (about 500 mg or 15 ml) seems to help her sleep. I average 4.5 to 6 hours. For sleep. I base it on what the Army does. Sleep is calculated in 90 minute cycles so that troops going into combat are as alert as possible. So 90 minutes is better than 2 hours as 2 hours would leave you groggy and dragging all day. Hence, 90, 180, 270 or hour and a half, 3 hours, 4.5 hours, 6 hours and so on. We also maintain schedules for meals and bath. DO NOT SKIP. Once stopped hard to restart. Moods. She imitates mine. Raised eyebrows and big smile she will copy. It will alter her mood if she is grouchy. Hope this helps kiddo.
We often say in my caregivers support group that if you've seen one person with dementia, you've seen one person with dementia.
However since your mom has Lewy Body dementia, I can tell you that the life expectancy is just 5-7 years as it is the 2nd most aggressive of all the dementias, with vascular being the most aggressive.
So if your mom has just had it for 1 year, you have a few more years to go unless the Good Lord takes her before then from something else.
It sounds like you're already burned out from her care, so I do hope that you're looking into placing her in a memory care facility, as you do not want to be in the 40% of caregivers of someone with dementia dying before the one they're caring for from stress related issues. And your mom wouldn't want that either.
Please take care of yourself and do what's best for both of you.
I wish I could tell you that you can pinpoint a stage. For me, it was impossible.
Find her proper care in a facility that can do the “heavy lifting”. Then you can go back to being her daughter and do all the visiting, loving, quality time you two have left together, If you do all the “heavy lifting” you will not be able to give your mom what she really needs from you…love and compassion. Those things are hard to give when you haven’t slept and spend all your awake time cleaning up urine, laundry, prepping meals etc.
The stages are fluid and each person is different (yes there are similarities) but each persons brain, thought process, memories, life experiences are so varied from one person to another it’s hard to put them in cut and dried “stages”.
https://www.dementiacarecentral.com/aboutdementia/facts/stages/#scales
I promised my mother that I would never place her in a nursing home but now regret that promise but she rarely lets me sleep. She wanders for 2-3 days through the house until she crashes for one day then the cycle begins again.
I’m exhausted.
I had my niece come in twice a week to get a break and that seemed to help some.
Since Oct my mom became completely incontinent. January my mom’s dementia was a lot worse and by the end of January, was bed ridden. I ended up putting her on hospice, which was a life saver.
She is at the end of her life and can no longer speak.
My advice is to take one day at a time. I was always looking ahead wondering how my longer I could do it. When I started thinking ahead it was depressing. Once I just said I will deal with each day as it comes and stop looking ahead. My mom’s life will probably end in the next week because she isn’t eating or drinking. I am happy I stuck it out and that she can die at home.
Tam Cummings assessment tools/AD checklist
https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
Thank you for this link.
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