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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.
"I am caring for my mother Alice, who is 81 years old, living in my home with age-related decline, alzheimer's / dementia, anxiety, arthritis, diabetes, incontinence, mobility problems, parkinson's disease, sleep disorder, and urinary tract infection.
My mother was diagnosed with both Parkinson’s disease and Lewy Bodies Dementia a year ago. Life is tiring and hopeless feeling."
You are probably burning out and that's why you're trying to figure how much longer you need to hang in. You don't. There are other options that may not be perfect but solutions nonetheless.
Please contact social services for your county to see if your Mom qualifies for any services. Then you can have a conversation about Medicaid.
You can also contact your local Area Agency on Aging for resources on respite for yourself.
I agree that I’m either burnt out or on the way to being so. I’m looking into hiring a night sitter so that I can sleep (I already have one for the day while I work) I mentioned this to someone else but I’ve been taking care of my mom for years but this was only for physical problems. I felt fine all these years but once the hallucinations and delusions started.. everything changed. It’s now draining and I have this overwhelming feeling of guilt that I can’t seem to handle this part of her diagnosis.
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 feel for you. I understand your exhaustion and burnout. Your situation sounds very familiar. I’m also caring for my mom who has dementia along with other debilitating illnesses. I also promised not to put her in a nursing home. Unlike you who’s been caring for your mom for years, this is my first year being her sole caregiver. Im sleep deprived and exhausted. I can’t imagine how you’ve been able to do this for years. No wonder you feel burnt out. I think it’s past the time to consider homecare help. Have you looked into that? I recently checked it out here in Massachusetts. Medicare and my mom’s medical insurance offer so many hours of help free. I believe the maximum for mom is 35 hours a week but no less than 8 or 9 hours a day. It would definitely take the edge off a bit. You need to take care of yourself. If you haven’t begun to research that, please consider it. You sound like a loving caring daughter. You owe this to yourself. Your mom will also benefit in the long run. You’re only human and can only do so much. I wish you well.
Hi! When it was just physical I didn’t think it was hard.. if that makes sense. I never had any sick days or personal days left at the end of a yearly cycle but that was okay. It was when the brain illness began that everything got hard. That has only been eleven months and it’s been so hard. I think when we talk like this with other that it really helps us. I have recently started applying for any and all help available. I also recently hired a caregiver for day time after finding out that the VA would help pay for one. I’m looking into home health now thanks to you.
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.
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
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.
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.
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.
Now that I know it is Lewy Body. Check out this webinar coming out in 2 weeks. If you registrer and miss it they will send out the program within a couple of weeks https://alzfdn.org/event/care-connection-webinar-lewy-what-what-is-lewy-body-dementia-and-how-do-you-healthcare-professionals-and-caregivers-deal-with-it/
I think staging is very hard to do as far as dementia is concerned. Maybe in the future this could happen when/if all the research is gathered, shared, analyzed to understand the general progression of dementia. Otherwise, as noted here, loved ones who have dementia have so many variables as far as behavior, length of illness and decline, it's currently not practicable to have staging to understand how ill they are. It would, of course, be nice to say person ____ is at 5.6 staging and then ______ will happen. People's brains are so complex, and individualistic, it's gonna take awhile before science can properly help us undestand and chart the pathway of mental decline. My husband has Frontal Temporal demetia. The general length of this disease is about 10-15 years, rarely 20. He was formally diagnosed three years ago. Had symptoms at least a year prior. His current behaviors suggest he is possibly mid-point now, when compared to similiar patient descriptions with FTD, their time of onset and duration of their dementia. As MACinCT here wrote, they keep track of changes by noting differences in behaviors at holidays. I do the same. I also note changes in a calender too. Which is helpful at doctor's appointments. I am in two Zoom FTD support groups. The feedback, information from fellow caregivers has been invaluable. If it's something you would be able or interested in doing, I strongly recommend it as a very important tool to help you understand what is going on with Lewy Body. Check the Alzheimer's web page, they should have groups like that listed. Lots of great information on this forum.
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”.
HAA2024, you made that promise without knowing the full brunt of it. Ask yourself what your mom would want for you if she knew what this process was doing to you. You can't keep a promise like that, it's not good for either of you.
We also have to remember what our mom's saw in the way of "nursing homes". Things were much different even just 20 years ago. Many of today's memory care facilities are very nice places with great people, good food, and attractive facilities. They are expensive but if you have help from the VA and others, it can be done.
My mom will be going into memory care in a few days, she has been in a skilled nursing facility for about 6 months now. On Friday of last week, she had a lucid hour and I talked with her about it. She smiled brightly and was excited to be moving to where her friend is. I've told her she will be in a different building (her close friend is in AL at the same facility) but that they will see each other on occasion and can visit more often than over the past few years. She was happy with that and it gave me such peace to know that even though she won't remember, her overall impression is good and she was not unhappy to be going there.
Do yourself a favor and visit these places!! I did not make a promise like that to my mom but I never considered it until dementia touched us and I realized that I am not the best caregiver for her. I visit 2-3 times a week currently but will visit less once she goes to the MC facility because it is further away and she will have more interaction with staff and other residents.
My mental health has improved greatly since moving her from my home where she was for about 11 months, having moved in after Alzheimer's had gotten to about stage 4. (She is about stage 5 now).
Alzheimer's is prominent in my family so I've made my family promise me that they WILL put me in a facility when the time comes. I've started making arrangements to make sure there will be funds for this purpose as well.
To me, there is no need to really bring the person to the doctor for diagnosis as the time and effort I spent on caring for the person was overwhelming already. I was just googling the internet and gave my best estimate of the stage of disease based on their guidelines. Unless you need the doctor's statement on paper as an official document for some insurance claims, the family doctor can write the letter and send it directly to the insurance. You do need to bring the person in for the annual checkup with the family doctor, however. This way the family doctor knows the person's disease status.
This is the website I googled today for the stages of dementia. The 7 Stages of Dementia: Symptoms and What to Expect (verywellmind.com)
But, like I said, there is no need to take the person to a neurologist, which would take more of your time than just the family doctor, who will make a referral for that specialist visit.
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.
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.
Get a referral from her PCP to a neurologist and go with her. Describe what you are seeing and let the neurologist do an assessment which involves asking her questions along with a physical exam. See if you can convince the neurologist to do at least a CT scan or MRI as both a diagnostic aid and to get a baseline of where she is. Get a copy of the report - you - or whomever has POA may need it to establish that she is unable to manage her affairs if that is the doctor’s opinion. Having that report is extremely important .I disagree with advice that you don’t need to involve a neurologist. The formal diagnosis of dementia related diseases requires a competent physician who has expertise in testing for those diseases. Once you have a diagnosis, make a plan to treat with whatever is recommended and safe and be the best advocate you can for the patient.
When my mom's decline seemed to accelerate, I had the same question. This is the most helpful resource I found: https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
I lived 1600 miles from my brother when he needed to go the neurologist because of memory problems and his inability to take care of his affairs. In advance of his appointment I sent a letter spelling out his deficits and examples of his behaviors. The doctor already had information so when my 23 year old niece took him to the doctor the appointment was very short and they left with orders for an MRI. Some people experience their loved ones suddenly doing “show time”, having a normal conversation and the doctor sees no problems. I wanted to avoid anything resembling that. Take your mom to a neurologist and they can help you get a better idea of what stage your mom is.
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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 am caring for my mother Alice, who is 81 years old, living in my home with age-related decline, alzheimer's / dementia, anxiety, arthritis, diabetes, incontinence, mobility problems, parkinson's disease, sleep disorder, and urinary tract infection.
My mother was diagnosed with both Parkinson’s disease and Lewy Bodies Dementia a year ago. Life is tiring and hopeless feeling."
You are probably burning out and that's why you're trying to figure how much longer you need to hang in. You don't. There are other options that may not be perfect but solutions nonetheless.
Please contact social services for your county to see if your Mom qualifies for any services. Then you can have a conversation about Medicaid.
You can also contact your local Area Agency on Aging for resources on respite for yourself.
I’m looking into hiring a night sitter so that I can sleep (I already have one for the day while I work)
I mentioned this to someone else but I’ve been taking care of my mom for years but this was only for physical problems. I felt fine all these years but once the hallucinations and delusions started.. everything changed. It’s now draining and I have this overwhelming feeling of guilt that I can’t seem to handle this part of her diagnosis.
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.
Your situation sounds very familiar. I’m also caring for my mom who has dementia along with other debilitating illnesses. I also promised not to put her in a nursing home. Unlike you who’s been caring for your mom for years, this is my first year being her sole caregiver. Im sleep deprived and exhausted. I can’t imagine how you’ve been able to do this for years. No wonder you feel burnt out. I think it’s past the time to consider homecare help. Have you looked into that? I recently checked it out here in Massachusetts. Medicare and my mom’s medical insurance offer so many hours of help free. I believe the maximum for mom is 35 hours a week but no less than 8 or 9 hours a day. It would definitely take the edge off a bit. You need to take care of yourself. If you haven’t begun to research that, please consider it. You sound like a loving caring daughter. You owe this to yourself. Your mom will also benefit in the long run. You’re only human and can only do so much. I wish you well.
When it was just physical I didn’t think it was hard.. if that makes sense. I never had any sick days or personal days left at the end of a yearly cycle but that was okay. It was when the brain illness began that everything got hard. That has only been eleven months and it’s been so hard. I think when we talk like this with other that it really helps us.
I have recently started applying for any and all help available. I also recently hired a caregiver for day time after finding out that the VA would help pay for one. I’m looking into home health now thanks to you.
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.
Tam Cummings assessment tools/AD checklist
https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
Thank you for this link.
I wish I could tell you that you can pinpoint a stage. For me, it was impossible.
Otherwise, as noted here, loved ones who have dementia have so many variables as far as behavior, length of illness and decline, it's currently not practicable to have staging to understand how ill they are. It would, of course, be nice to say person ____ is at 5.6 staging and then ______ will happen. People's brains are so complex, and individualistic, it's gonna take awhile before science can properly help us undestand and chart the pathway of mental decline.
My husband has Frontal Temporal demetia. The general length of this disease is about 10-15 years, rarely 20. He was formally diagnosed three years ago. Had symptoms at least a year prior. His current behaviors suggest he is possibly mid-point now, when compared to similiar patient descriptions with FTD, their time of onset and duration of their dementia. As MACinCT here wrote, they keep track of changes by noting differences in behaviors at holidays. I do the same. I also note changes in a calender too. Which is helpful at doctor's appointments.
I am in two Zoom FTD support groups. The feedback, information from fellow caregivers has been invaluable. If it's something you would be able or interested in doing, I strongly recommend it as a very important tool to help you understand what is going on with Lewy Body. Check the Alzheimer's web page, they should have groups like that listed.
Lots of great information on this forum.
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”.
We also have to remember what our mom's saw in the way of "nursing homes". Things were much different even just 20 years ago. Many of today's memory care facilities are very nice places with great people, good food, and attractive facilities. They are expensive but if you have help from the VA and others, it can be done.
My mom will be going into memory care in a few days, she has been in a skilled nursing facility for about 6 months now. On Friday of last week, she had a lucid hour and I talked with her about it. She smiled brightly and was excited to be moving to where her friend is. I've told her she will be in a different building (her close friend is in AL at the same facility) but that they will see each other on occasion and can visit more often than over the past few years. She was happy with that and it gave me such peace to know that even though she won't remember, her overall impression is good and she was not unhappy to be going there.
Do yourself a favor and visit these places!! I did not make a promise like that to my mom but I never considered it until dementia touched us and I realized that I am not the best caregiver for her. I visit 2-3 times a week currently but will visit less once she goes to the MC facility because it is further away and she will have more interaction with staff and other residents.
My mental health has improved greatly since moving her from my home where she was for about 11 months, having moved in after Alzheimer's had gotten to about stage 4. (She is about stage 5 now).
Alzheimer's is prominent in my family so I've made my family promise me that they WILL put me in a facility when the time comes. I've started making arrangements to make sure there will be funds for this purpose as well.
To me, there is no need to really bring the person to the doctor for diagnosis as the time and effort I spent on caring for the person was overwhelming already. I was just googling the internet and gave my best estimate of the stage of disease based on their guidelines. Unless you need the doctor's statement on paper as an official document for some insurance claims, the family doctor can write the letter and send it directly to the insurance. You do need to bring the person in for the annual checkup with the family doctor, however. This way the family doctor knows the person's disease status.
This is the website I googled today for the stages of dementia. The 7 Stages of Dementia: Symptoms and What to Expect (verywellmind.com)
But, like I said, there is no need to take the person to a neurologist, which would take more of your time than just the family doctor, who will make a referral for that specialist visit.
Good luck.
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.