What is the average time between stages?

wamnanealz, it is entirely possible that he had the urge to poop and could not remember where the bathroom is or how to get there. Diaper time.

I think the stages are accurate to be honest - there is no defined wall of staging though and most doctors will tell you how little they do in fact know about dementia. They use stages to clarify what they are talking about just as we use numbers to determine how watery poop is or qualification to determine what entry level to the services we should be at.

Its not a definite oh she/he cannot do that - then that is stage 3 its more of a guide to show people the deterioration that can and probably will occur along the way. That said it totally depends on which lobe of the brain is being attacked or if you prefer where brain cells are damaged that determines which losses occur when and in what order and it's that bit they haven't gotten to understand yet - hence the seeming lack of clarity

I always think I have a tough life caring for my 95 year old mother until I read some of your comments here. That is when I realize it could be so much worse. (Wamnanealz for one). For those of you who are caring for your aging parents or spouses, God bless you. Your life is not easy. Only those who have done it understand the heartache and hardships you go through on a daily basis. Stay strong and know that the Lord really does have mansions for each and every one of you in Heaven. Seek help in any way you can. You are NOT weak, uncaring, unthankful or any other negative feelings you have. You are human, doing a herculean job others don't or won't do. Give yourselves a big pat on the back and know that there are others who really understand the frustrations you are going through. A big hug to all of you wonderful caregivers out there. You all deserve a gold medal for your efforts!

I agree, Dave, that "stages" are B.S.! Absolutely! Doctors like to think they know more than they know; sometimes they know nothing. That's why they're "practicing." :)

can't not can to

For what it is worth Grammy I don't think they have a scooby as to what dementia is. They can only tell if it even is dementia following an autopsy for heavens sake - bit late then. The main problem is that at that age we all start to slow down - our brains included - so sometimes we don't even know there is an issue until there really is an issue.

When the final hour on this earth comes for us ALL I find it quite amusing that for all the medical science that exists we still don't have cures for the common cold, we don't know why some people get sick while others don't, why some smokers die of cancer and others don't, why some drinkers get sclerosis and others don't (dear lord my ex should have died years ago) why some people are prone to strokes and others aren't.

Let's face it people we are not immortal we are all going to die eventually so why do we waste such vast amounts of money eking out a few extra months when we should have done all we needed to when we were fit - it's not like dying is a new thing!

I had done more by the time I was 40 than my parents did in their lifetime and I don't regret it one bit. Regrets - cue for a song I have a few...that I never knew my birth mother, that my Dad died before I was ready for him to, that I am a compulsive eater and can to get it under control at all ...but wonder if that will stop when Mum dies since she is the root cause I know - Ive lost 7 pounds while she has been in hospital! Not marrying the American who asked me to - bad bad bad mistake! Things I will never regret - meeting the lovely people I have met along the way, teaching my children to care about people (still doing that with my son and he's 40!) Meeting and marrying my husband although we divorced, learning to stand up for what is right and not backing down to save face, supporting people less able to manage than I am and despite every moan and groan I make on here I know I won't regret taking care of Mum....eventually!

Jude was spot on. Got the news from dad's doctor that he can no longer remain at home. I've been through 3 agencies and I'm on aide # 5. I'm an only child with 3 sons who due to circumstances beyond my control don't speak to me. The youngest son had dad sign "divorce" papers for him 3 years ago. They were papers to use dad's house as collateral on a $100,000 line of credit. Since it can't be proven that dad had dementia when he signed the papers, dad's elder care attorney can do nothing about the mortgage. Dad has lived in his home over 50 years and done no preventative maintenance at all. With people living in the home everything is starting to need major repair. The money to care for dad will be gone in order to keep the house up. I have gone through every emotion. Hate for my sons, hate for my dad for putting me in this position, guilt for feeling like I did, compassion, caring to wishing he was gone. I'm tired. Everything is on my shoulders. But, in order to maintain my sanity, I just decided that I am one person and I'm doing my best. I have to look for placement for dad in a facility due to his doctor's orders and that will be my priority from now on. Everything else will fall into place eventually, but I will make sure that I am taking care of me too.

Jude, your input is not controversial, but right on. Most caregivers feel the exact way you described. Thank you for your honesty. My spouse was diagnosed with Alzheimer's in 2006 and yes, there are days I don't think I will make it. After 40 years of a spouse who would not listen to his doctors and continued to smoke and drink, gained weight with is BP soaring, Alzheimer's was his diagnosis. His life changed and he became more bitter, nasty, and spiteful person. I've never smoked, never drank, but it is me that has been handed a life sentence. So, yes, there is bitterness, days I wish he would just die, and days I am so tired I don't want to get out of bed. Tired of the lying, the deceit, the screaming, the isolation, accusations, loss of self-worth and dignity. Caregivers do not have much to look forward to and the loneliness of being excluded from the outside world is over-bearing. To maintain my sanity, I dream living in a fantasy world---pretend I'm young again, walking with a date holding my hand and telling me how nice I look and how much they care. I have fantasy names, places, role models---scenes from my own private movie, but a movie that never ends. It helps me cope, helps me fall asleep---the only way I know how to survive. However, every dementia person is different. Some free-fall while others progress very slowly. A neighbor who is the same age as my husband, worked in the same career field, has the same number of children, the same basic environment and yet he has deteriorated much faster than my spouse. No one can give an answer why...perhaps there are too many variables. All we can do is hope and pray. But, it is the hardest job I have ever had---a job I acquired without a resume.

There are no two case alike!!My sister is 71 yrs old & has Alzhiemers for 3. 1/2 yrs that we know of.& she has nothing else wrong with her.My sister has the aggressive type of Alzhiemers..Last Christmas I could see a big change in her -- by the time March came she really declined .I had to place her in the hospital because she was not eating ,or changing her clothes she thought she had ,she would smoke instead .She would tell the case workers that she baked, cleaned her house could cook her own meals.She went from weighing 140 lbs to now 90 lbs. From April until now she is in another stage -- she hits the RPN's or she sticks her tongue out at her care givers & pouts.She basically acts like a child at times.Her short term memory is gone.Days weeks & months run together.She knows she has a home,but does not realize she can never go home.I am her family ( her sister & POA ) I never thought I would be looking after my sister.Her hubby passed away 4 yrs ago & my sis went down hill right after that.Alzhiemers / Dementia is a terrible diseasez & you can be young or old .Stress can play a big part in it .They can be happy one day , cry the next day or can be verballyd insulting or violant.I am waiting to have her placed in a home where she will be safe & can not wander.She does that also.!!My Mother had dementia due to mini strokes & heart problems-- my sister has none of that.She lives in her mind is what she does.Very sad.Do I feel guilty placing her in the hospital NO I DO NOT .I can sleep at night knowing she has not fallen or that she is not outside wandering Basically the brain cells are dying & the brain is shrinking..I always tell her I love her & give her a big hug & a kiss .I am 5 yrs younger then my sister.Ironically my sister was a health aid who took pride in taking care of dementia patients in a nursing home.She thinks she is helping the RPN's & is working.:)
Every case is different .If you met my sister you would think she was fine-- until you are with her for a while & she halusanates & you say to yourself - where is she coming from?My sister has gone through about 4 different stages of this terrible disease Hope this was helpful.

Jude, that was enlightening, scary. And Sweet all at the same time, my FIL does not yet have dementia, but I do see some some Age related Senility, I pray that it doesn't progress further for sure now! Yikes!

My Mom hasnt spoken, or walked, and has been incontinent almost 5 years now and needs 100% done for her. I even puree her foods and use thick it in her drinks. She has mixed dementias the dr said. I see no change in her at all, yet she can still smile and laughs a lot, especially in her sleep. Shes been here over seven years in our home.
My M

I want to add something that I know can be controversial but I am going to add it anyway.

There will be times of lucidity - even in later stages there are days when you think wow this hasn't been so bad.

There will be days when there are 3 of you living in the house and your mum will be two of them

There will be days of utter frustration because in front of others the memory appears normal.

There will be days of hell when nothing you do is right and to all intents and purposes you are the devil incarnate.

There will be days when you think I wish she would die and yes I know that is a horrible thing to say but many many people feel that way for two reasons - one - they aren't coping - time to seek alternatives. and two - you know the person so well that you know beyond all doubt that they would rather die than exist.

There will be days of fear and lots of tears as you desperately try to help someone come to terms with something so strange that even doctors know little about it.

There will be days of sadness as you realise how much of your previous life has gone.

There will be days when you see utter fear in her eyes - they are the worst for me

There will be days of anger when you can't get help from your family

There will be days of disgust with yourself for not being able to cope with the various excretions you will be expected to handle (not literally)

There will be days of angst at how on earth are you going to cream areas you never thought you would ever come into contact with

Then there will be the joyous days - when she smiles or touches out to hold your hand, the days when she looks happy, the days when you take her out in the wheelchair and you can see she is enjoying it - these are the days you hold on to when the days darken once more.

I know I will have made care-giving look bleak - it is if you aren't prepared for what is to come...so read widely my dear friends for knowledge is key

Finally know when the time has come to say I can't do this any more - it is OK to say it - you are not immortal xxxx

Jude, Jeanne and Christine,very very informative posts! I never knew there were so many types of disorders. This site has been a Godsend for me! Love you people!

Thank you so very much Jeanne, Jude & Christine!!!!! I really appreciate all the great knowledge you girls have! I am very scared & nervous because I live with my mom & I see the memory declining right before my eyes. She really doesn't think her memory is that bad and she thinks I'm exaggerating when I tell Drs that, etc. This is very very difficult. I feel all alone. I have only 1 sister and no other family at all. I guess I need to prepare for the worst, but hope for the best.

My dad went from "we were able to handle and he could go on outings with us" to "what the heck just happened" in 2 days! I am not kidding! After q week of the last behavior we knew we needed respite care to get our bearings.. and he passed peacefully 2 weeks later. In a MC after a hospital stay from a fall. We were stunned how fast it happened, he was shopping with us one day and eating out, then BOOM... angry and not sleeping at ALL... violent behavior.. not my dad at all. We never even got to the stage where he needed help with the potty, etc. ( or at least not major help) I agree it all is "up to a higher power"

cammetro, no one can tell you if, or at what rate, your mom will get worse. God forbid, she could die peacefully of something else before there's any change in her cognitive ability. I would make sure her doctors have checked all other possible causes, including vitamin D deficiency. You may even go as far as having a PET scan. MCI does not turn into Alzheimer's. Ppl who have Alzheimer's are sometimes diagnosed with MCI first, though. As another poster said, there are many types of dementia. Someone is considered to have dementia when they are "activities of daily living disabled." The activities of daily living are eating, dressing, bathing, toileting, and something else.

Your mom needs a neurologist, a good one, who can make a determination of if and when to put her on Aricept and/or Namenda. My mom did great on Namenda for many years starting in 2006. In 2010, they added Aricept which she is still on. Aricept definitely keeps people with Alzheimer's functioning better, longer. It was recently approved by the FDA for ppl in all stages of Alzheimer's, even end stage. I used to work in the pharmaceutical industry and I know how hard it is to get an additional indication for a drug. You have to show that it works. You'll hear a lot of ppl say Aricept "doesn't help." The truth is, it helps ppl with Alzheimer's A LOT. It doesn't really help ppl with other dementias as well. So maybe that's where that's coming from. Someone who didn't have Alzheimer's used it and didn't see a great result.

The greatest gift you can give yourself and your mom is hope. Don't just take someone's word for something (even if that person is a doctor). Get a second opinion, see a specialist, do your own research. Some doctors are biased and ignorant. Some ppl, I believe "want" to believe nothing can help in order to absolve themselves of the guilt of not being brave enough to try. Don't do that to yourself.

Thanks, Jude! Very helpful.

Cammetro, If your loved one was diagnosed with Mild Cognitive Impairment that means her symptoms are similar to early dementia but not severe enough to interfere with her daily life. It may turn out this is very early stage dementia and yes, she will get worse. But it may be some other cause and won't necessarily progress. Wait and see -- with a doctor keeping a close eye on it.

If she has been diagnosed with Mild Dementia or Early Stage Dementia that means her symptoms are consistent with a diagnosis of dementia, type unknown at this point. Dementia always progresses -- it gets worse -- but at widely varying rates.

If Mom has dementia, then it is what it is now -- ALZ, LBD, -- any one of abut 50 kinds of dementia, many of which Jude describes. It won't "become" one of these, it just may become more apparent which kind of damage is in her brain.

In other words, if there is dementia-type damage in the brain it doesn't change into something else. It just progresses.

Both my husband and mother had dementia. My advice to you is to take one day at a time. You will know what the progression will be like when it happens, and not much before. Now is the time to enjoy your mother as much as possible, and to make her life interesting and pleasant. Take a trip with her. Take her to concerts and plays and museums or whatever activities she likes. Store up memories while you can. Not only is this happy for all concerned, but such stimulation may help extend the "mild" period.

Best wishes to you, cammetro, and I hope to see you posting on this site as you deal with this new reality in your life. We are here to help each other!

Cammetro the simple honest answer is yes it will get worse - but you need to get a few things straight.....While Alzheimer's Disease causes dementia not all causes of dementia are Alzheimer's. Dementia describes a situation that occurs when the brain is affected by disease etc - It comes from the latin de..... meaning from or out of , and mens...... meaning mind....... so dementia is really something that makes someones mind malfunction but it s used today to describe some conditions that cause one to be out of one's mind

There are many dementias and they vary greatly according to type and the individual who has them:

Alzheimer's disease is the most common cause of dementia. With Alzheimer's the chemical balance and structure of the brain alters which in turn leads to death of brain cells.
 
Vascular dementia is also common and very much linked to strokes and mini strokes
when the oxygen supply to the brain fails causing brain cells to die potentially. Can occur suddenly after a major stroke or over time after a succession of mini strokes
 
Dementia with Lewy bodies - Linked strongly but not exclusively to Parkinsons.... some little structures form in nerve calls and if they are found in the brain they begin to to affect the brain tissue

Fronto-temporal dementia is a more antisocial dementia in that it affects personality and behaviour more radically initially and the brain damage as you would expect is at the from of the brain and down the sides towards the temples. memory loss will come later

Creutzfeldt-Jakob disease you may have known it as mad cow disease and it stopped the sale of British beef for quite some time - especially buying soup bones etc - basically the disease attacks the central nervous system and then the brain, causing dementia.

Alcohol induced dementia - sometimes called -Korsakoff's syndrome is a brain disorder that stems from long term excesses of alcohol. Not exactly a dementia but there will be short term memory loss.

Cognitive impairment
This is a late stage condition associated with HIV and AIDS sufferers
 
Mild cognitive impairment
Catch all term for people who have memory issues but not a recognisable dementia - they may develop dementia later though and it is a flag for doctors to keep an eye on.
 
There are others about which I know little but I know others on here have had dealings with some of them:

PSI progressive supranuclear palsy - all I know is that it is rare and like all other dementias worsens over time

Binswanger's disease. - I know nothing about this one just of its existence

But other diseases appear also to lead to dementia

Multiple sclerosis
Motor neurone disease
Parkinson's disease - my grandad had this - results in increasing problems with movement and coordination, usually accompanied by tremors which can become severe usually in the hands

Huntington's disease - I think this one is inherited but if it isn't someone will soon shout up - it results in motor difficulties

How they progress depends on which areas of the brain are damaged

If you consider the frontal temporal occipital and parietal lobes each of them has a function - damage to any one of them will cause disruption

frontal lobe - the largest and controls to an extent speech thought and some behaviours, memory, intelligence, concentration, personality and temperament

temporal lobes aid visual and auditory memory remembering things we have seen before and also the things we have heard before and to interpret others emotions and reaction

occipital lobe help processes size shape and colours and all things visual

parietal lobe interprets signals from all areas of the brain vision hearing memory and sensory perception and movement

Here endeth the first epic posting sorry about the length of it

MBJtampa, everyone who says it varies greatly among individuals is right. And it also varies greatly from one kind of dementia to another. Alzheimer's does progress through recognizable stages, though not everyone exhibits all stages and certainly not all stages for a predictable length of time each.

Lewy Body Dementia (including Parkinson's with Dementia) gets worse over time but does not follow a pattern of stages. LBD is "early, mid, or late" -- the medical profession does not talk about "stage 3" or "stage 6" with this disease. LBD is characterized by large swings in cognitive ability. Many good days and bad days. Even good hours and bad hours. For caregivers who do not understand this it sometimes seems that the patient is faking symptoms. "He could do that this morning! I don't believe he can suddenly not do it this afternoon." But it is true -- symptoms in LBD fluctuate a lot. It is the nature of the disease.

Thinking about "stages" may help us understand the progression of Alzheimer's, but it does not provide a timeline. And ALZ stages don't necessarily apply to other types of dementia. And more than one type of dementia can be present in the same person.

If my mother has been diagnosed with Mild Dementia, does that mean she is going to get worse & worse??? Does it turn into Alzheimer's?

My mom in law is beginning another stage. She was diagnosed about 8 years ago. She is now 84 yrs old and in a nursing home. (Fell and broke hip; then fell and broke ankle, so had to be moved to 24 hr skilled care...for I am disabled and can not care for her)She can not do anything for herself....and now has started talking in gibrish....no words we can make out...then she says she does not remember doing it. She does not remember one thing to the next. EXCEPT she wants an apartment of her own and needs no help. She knows my husband and myself for we see her weekly (or more)...but when others visit, she has no clue who they are until they tell her. She could not drink from a straw this week either. Takes 2 aides to get her up from bed to wheel chair...and of course to go to the ladies room. It is so sad. I hate this disease.

I have to back both Jude and dave My sis in law's mom died 5 years after being diagnosed and In the NH I've had patients with many more tears. To wamnanealz God bless you. I now have my wife, 71, being evaluated because of her behavioral and mood problems. She would have a bm then take it and hide it or have bm then get off the toilet and yell that someone pooped in the toilet and did not flushed. There all different but also the same. You can try signs and cues but my wife would rip them up. You must think about your health too because your no good to anyone in your life if you get sick or can not function.

One more thing to ask about and be on top of. Some dementia units stop residents aricept and namenda upon admission. They do not ask your permission and they don't inform you. Ask for their policy on this, as well as their policy on "psych meds." Go in knowing your rights to change physicians, see outside doctors, take you dad out overnight and for day trips. Ask who all your contact people are for different issues. It's best to ask as much as you can before admission. If you ask a lot of questions after admission, they become defensive.

Lucysmom, I've been where you are and I'd like to offer some tips. Take tours of facilities before admitting your dad. alz.org has a list of questions family members can ask when interviewing facilities, but even more important than that, two factors. 1. Go to the medicare/medicaid site and look for facilities with a high staff to patient ratio, and ask about this when you tour. For exam,ple, my mom's unit has 30 residents and there' only 1 aide on duty for the 11 pm - 7 am shift. When you ask the facility about how many aides and nurses are on duty, they will give you their high number. Ask for the number for all 3 shifts: 7a-3p, 3p-11p, 11p-7a.
2. Pay attention to the intangibles. How do you feel there? How does it appear the residents are being treated? Does the staff seem caring and concerned, or busy and distracted? How does it smell? Do the residents seem happy? Are the floors clean? How do you feel being there? What's the vibe like? Would you like to be a resident there? All these intangibles are so telling and so indicative of what the facility is really like. Before accepting any opening, ask to look at the specific room that is available. Even if you like a facility, don't just accept any room without looking at it first. In some facilities, there are differences among units. When you do your tour, they will show you their best. TAke 2 or 3 tours if you need to, at different times. See what meal times are like. Weekdays and weekends. Evenings are very telling, too, especially in a dementia unit. Pay attention to the way you're treated. They will treat you the best when they'r trying to get your business. If their best is lacking, watch out. Also, I would recommend showing up unannounced and just observing. I did this at a nursing home in my area and I found a demented man walking past me, out the front door! When you look at facilities, ask if the facility has either a locked or secure dementia unit. Post here again if you have questions in the process. A lot of us have been there. Run things past us. Good luck, and God bless.

Dad's mild dementia worsened after his stroke in May. The attending doctor in rehab asked him if he would rather go home or to a facility. Duh......what did she think he would say??? I wasn't present. So, the protective daughter in me kicked in and his home was made ready for him to return. Acorn chair lift installed, all throw rugs removed, handles on both upstairs and downstairs toilets and 24 hr live in help arranged. Thought it odd that I received a call saying the doc at the rehab suggested him for participation in a after stroke grant. They provide a nurse once a month and a social worker comes to the house to interview us. What it is, Medicare provided the grant. It's purpose is to keep patients from returning to the hospital. She had to inspect the house to make sure it was safe for dad. Sure, to make sure he didn't trip and fall and go back to the hospital. She was very concerned about his finances. She didn't get very far on that one! Anyway, I see that his dementia has progressed. He has the aide, but he won't do anything to stimulate his mind. Now he says something hurts and he must go upstairs to rest. Refuses Tylenol. Will lie on his bed for 12 hrs or more, refusing to come down to eat or drink. But, at 1 AM he's ready for breakfast. Makes it hard on the aides, we've been through 4. In retrospect, I'm so sorry that I didn't move him to a facility. He would have had stimulation with people around him, activities etc. Sure he may have resisted at first, but by now he would have settled in. Took him to his doctor this week. Time to find a facility for dad. Now after being home for 2 months I have to start looking for a place for dad. I now see that my good intentions actually hurt him more than helping him. There was no way to predict how the dementia would progress. Just a thought for someone else in my shoes.

Everyone progresses at a different rate, but my mother's neurologist was able to tell us that it appeared my mom's Alz would progress more slowly. And he was right. Don't know how he did that. She was first diagnosed in 2006. Today, she's mid-stage. She was just placed in a nursing home in November.

Dave and Jude have provided the plain, honest estimation. Nobody knows, so stop trying to figure it out. If you are obsessing abut it, you are too stressed to do as much as you are doing. It is time for some relief. We can't wait until they die to live!! We will always be responsible, but we don't have to do the hands on caring alone. I spent 10 years of my productive life. Now I have the chance to live but I am older and more limited in what I want to or can do!!!

bless you wam - do you think a large picture of a toilet on the toilet door might help him recognise it? I know they use them in care homes - please note it has to be a toilet he will recognise sometimes this has to be a picture of an old style toilet for it to have any meaning to him

My Mom is 81. She was formally diagnosed a couple of years ago but noticed something wrong probably 4 years ago or so. She lives alone and before her hip got bad walked everywhere and took care of herself, she was not very social with us kids so I never really noticed. I started going every two weeks to take her grocery shopping errands etc. She has now progressed to the point I go weekly. Her decline has been pretty steady. But if you take her out of routine (IE I took her with me out of town for a memorial service) it really messes her up, she does not know where she is then or who people are etc.) Left in her routine she just seems "forgetful" at this point.

Oh my gosh... Thank you for this information. Your mom who is 92 reminds me of my mom whom is 83. She has good days and bad days and falls and gets set Back for weeks. Now remains in wheel chair and sleeps in a lift chair. Soooo very sad. :(