Hello. I have been caring for my wife with early onset Alzhiemers fulltime for about seven years now. Had to quit work and cashed out my retirment fund. Worked at Disnet 35 years. Just FYI I have read that some can survive as long as 20 years though not typical. I had asked my doctor how to determine stages and he said there really isn't stages per say where you graduate from one to the next but that it is more of a descriptive term for current state which is also used, I guess, for trials or doctors notes and will not indicate remaining years. I really don't know since that was several years ago and I don't remember exactly. But she had started showing signs 10-11 years ago.
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.
Lewy Body fluctuates daily. She has extreme variations. Determining mom’s stage is impossible. She is healthy so she has the ability to walk around and chat. Most people and staff chat with the advanced elderly on a surface level. “How are you? Did you play bingo? “. Mom can still present fairly normal with most people. Yet she attempts to leave her AL to get outside to “the bus where her bed is kept“ . She tells me “they keep moving her bed from room to room so thats why she gets lost”. She asked me the other day “how do I know what side of me is my front side?”. She was wearing her bottoms backwards. Most people tell me “ you would never know your mom has dementia”…wow…I do. We just work at keeping her safe and content.
I never bothered with looking at stages for 2 family members. I just measured the changes each year on a particular holiday. Consider it a journey. By reading about those stages, some behaviors crossed over and some were not an issue. My decision on what to do like stopping going on trips, and determining when it was time to put in a care facility is a very personal matter. So once you know about the stage, what do you plan to do? In my case with another family member who was in a nursing home, non verbal, incontinent and bed ridden, would you consider this as late stage? She lived like this for another 3 years. That is until she got to failure to thrive with eating. So if you are burned out now, can you imagine another 3 years?
I understand that to some my question might seem insensitive. When my mother began to hallucinate after just two weeks of being on the Parkinson’s medication, levadopa carbadopa, I had no clue what was going on. Her neurologist didn’t tell me anything except that she wanted to put her on a medication called nuplazid. I spent the next five months very confused as she was having constant delusions, hallucinations, paranoia, and she would go days with no sleep until she would crash for a day and then the cycle would repeat itself. It wasn’t until August that her family doctor diagnosed her with Lewy Bodies dementia with Parkinson’s and gave me a brochure after telling me to find her a nursing home as soon as possible. I’m still here and so is she but no doctor has told me much of anything except to research about it.
It can often be difficult to figure out what stage of dementia a person is in as literally everyone who has dementia is different. 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 tried very hard to determine my mom’s stage but her behavior did not fit any of the typical descriptions. Even when she died, her behavior was “A typical”. It is funny but when you are with them every minute it can be difficult to recognize the decline. She was in my home and someone on the forum said they can mask their decline because of the familiarity of the environment. When we moved her to the ALF her true state was clearly visible. Not sure if that was her true decline or the impact of the move.
I wish I could tell you that you can pinpoint a stage. For me, it was impossible.
Yes you are burned out. Who wouldn’t be?? Please don’t dwell on promises made in the past. Neither if you had any idea of the toll this disease can take. People who make that promise are well meaning, but naive.
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”.
People who ask about stages are often really asking how long their loved one has left to live. If they don't die from other age related problems those in the final stages are profoundly physically disabled, when my mom finally died she was as helpless as a newborn - totally incontinent, non ambulatory, mostly non verbal, unable to feed herself, sleeping 20+ hours each day.
I really do think I’m burnt out already. I’ve cared for her physically for years and felt fine but it wAs when her mental state changed (and changed rapidly and quickly) that I started to feel overwhelmed. 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.
My mom has been living with me for 8 years. When she first moved in I saw some forgetfulness but nothing to bad. I had promised her I would never send her to a nursing home either. This past year has been totally different. In August my mom had delirium and everything has changed. She was in the hospital and they asked me about sending her somewhere. I just couldn’t do it, but by October, I was losing my mind. I was her sole caregiver. She was falling constantly because she. Would get up as soon as I left the room. I could be sitting with her for hours and asked her if she needed anything before I left the room and she would still get up. She could be mean sometimes and my mom was never like that. I ended up looking into assisted living but then just decided to keep her at my house. 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.
Here you go--some use 3 stage scales (usually a physician), but I like the 7 stage model at the back of this document, though I note it's more for Alzheimer's than the other dementias. You do want to 'stage' her to the behavior that's furthest along, even if it's not consistent. You loved one won't check every box in each stage, but they will tick some off as the stages progress. And some people hang on to certain capabilities almost to the end.
Tam Cummings assessment tools/AD checklist https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
having a parent with Alzheimer's dementia is a very complicated issue, my mother is 86 going 87, she was living in PR. once she started to age and became widow I told her that she needs to live with me, but, she refused to come live with me to US. until my only brother call me and said that my mother was fainting and taken to the hospital. my mother was extremely disoriented, very skinny, she was not even able to walk, incontinency( all the way). while I was in her hospital room, I found some papers from another hospital saying that has history of Alzheimer's dementia, which I had no clue, then it made sense to me why she didn't paid her phone bill or why she was not cooking home as my brother told me. when I used to call her on the phone which was daily I dint noticed. while in the hospital she was angry saying that the hospital was not providing her with food, which I reply, mom, I just fed you, she would get very angry and agitated, she also was saying that there were lots of flies in the room. I knew it was time to bring her to live with me to US. which I did. after about 2 weeks my mom started to walk, eat, talk acting completely normal, then my real problems started with her and some outside family members, she would call them and said that she can be by herself in PR. and when she speaks to them she sounds fine, but home, she is constantly leaving the stove on, and some days she is completely in another world, only been with her every day, is when people can see the reality of dementia. by the way, she almost kill herself while driving in PR she had an accident, apparently she let go of the steering wheel, while having an episode of dementia, and this event was the one that started everything. my family is accusing me of lying that she has Alzheimer's dementia even thou, she has the diagnosis from doctors in PR. AND US. just because when she speaks to family she sounds normal.
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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