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
Well I asked the consultant this only 2 days ago and also a consultant in Dementia about3 months ago and their responses were as follows.
SO little is known about dementia that it is almost impossible to tell. It depends on several (for several read limitless) factors.
They include: Age at start of onset (rarely known - most only have a diagnoses after several years it is thought) Heredity (although heredity is not necessarily a factor (WTF?) What type of dementia is in the family if any (so genetic ..yes? erm NO) Whether they have had falls Whether they have had strokes Whether any other type of dementia is present or will develop - oh can you track this - erm NO it is mainly known after death - well thats helpful - NOT How healthy they are What stimulation is present - movement, interests, people How well they eat/drink What medication they are on could be put on that will assist (albeit not suited for all and to date quite limited)
The consultant in dementia said my mum had about 8 years - from mild to moderate stages - when he saw her - Hell I could have diagnosed that she is 92
The consultant I saw 2 days ago had more clarity. He said it was impossible to determine how long each stage would last as dementia for each and every person is individual to them or as far as they can tell it is. He said it generally speaking follows two pathways - either a general gradual slope of decline or a stepped decline. My mum seems to have the stepped variety as she plateaus for quite some time - that is usually followed by a fall or a UTI and we go down a step.
He added decline is not always mental as I expected - the decline can be in the physicality as well. Right now mums brain as far as function is plateauing but her mobility is in decline.
The usual (read average) duration of Alzheimers is about 8-10 years but it has been much less (probably due to a late diagnosis) and sometimes much more - as long as 25 years
If they have a mixed dementia - i.e. Alzheimers and vascular dementia then the time span may reduce to 5 years
There is no CONCRETE time span for each stage so he told me and it does vary widely between individuals. Sorry that is not more helpful - just telling you what I was told by two eminent specialist in their field
Are you asking about the average length of each stage of Alzheimer's? From MCI to late stage Alzheimer's. Once a person is diagnosed with this disease, then they will move through the stages at varying rates, Also the stages are not hard and fast, persons, IMO, drift into the next stage. Thus keeping a diary of their behaviors is very important, so you can see real changes in their behaviors. When you are a caregiver, then it is harder to see changes because you are there every day. I suspect you are looking for more concrete answers. As the phrase goes, when you have seen one person with Alzheimer's, you have seen one person with Alzheimer's.
Once a person is diagnosed with this disease, they will move back and forth through the stages. I think stages are BS. I prefer Early, Mid, Late, dead,
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.
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 husband has had obvious symptoms for 10 years. We are now entering the 11th year of decline. He is now entering the final stage. He needs 100% done for him. At least he lets me help him in the bathroom. After 2 years of diarrhea, he is finally letting me put him on the toilet as Bob DeMarco suggests. Works if they let you do it. He refused to allow me into the bathroom until recently. He was going in to the bathroom and pooping all over the floor, on the walls, everywhere. Yesterday I caught him going out in the garage to poop. I have read on here that they go in closets, anywhere they think might be a private place. I found poop out in the garage the other day and thought my dog did it until I found a turd up on a box! I knew the dog couldn't do that! It is extremely stressful and exhausting to clean up after him. Eventhough he needs help in every activity of daily living, he CAN STILL walk and go wherever he wants to go. He has never walked out of the house to go elsewhere. He does go out to spin a big artificial flower I have out in the garden. Then he comes in. My dogs alert me when he goes out. I also have a GPS system on his wrist, and a warning system on the doors to let me know when he goes out. I wish he would progress quickly to the in bed stage. Then I could put him in a nursing home. He still wants to be wherever I am and he seems happy 95% of the time every day. That is what is important! But I am really getting so tired of being isolated in the home with him. I do have a VA Caregiver who comes for 10 hours a week. But he still won't let her do anything for him. That is frustrating. Hopefully as he is declining further into this final stage, he will allow her to help him in the bathroom, dressing, washing, teeth brushing, shaving, etc. I am hoping this won't last more than 4 more years! I would like to have a life again.
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!
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
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
SO little is known about dementia that it is almost impossible to tell. It depends on several (for several read limitless) factors.
They include:
Age at start of onset (rarely known - most only have a diagnoses after several years it is thought)
Heredity (although heredity is not necessarily a factor (WTF?)
What type of dementia is in the family if any (so genetic ..yes? erm NO)
Whether they have had falls
Whether they have had strokes
Whether any other type of dementia is present or will develop - oh can you track this - erm NO it is mainly known after death - well thats helpful - NOT
How healthy they are
What stimulation is present - movement, interests, people
How well they eat/drink
What medication they are on could be put on that will assist (albeit not suited for all and to date quite limited)
The consultant in dementia said my mum had about 8 years - from mild to moderate stages - when he saw her - Hell I could have diagnosed that she is 92
The consultant I saw 2 days ago had more clarity. He said it was impossible to determine how long each stage would last as dementia for each and every person is individual to them or as far as they can tell it is. He said it generally speaking follows two pathways - either a general gradual slope of decline or a stepped decline. My mum seems to have the stepped variety as she plateaus for quite some time - that is usually followed by a fall or a UTI and we go down a step.
He added decline is not always mental as I expected - the decline can be in the physicality as well. Right now mums brain as far as function is plateauing but her mobility is in decline.
The usual (read average) duration of Alzheimers is about 8-10 years but it has been much less (probably due to a late diagnosis) and sometimes much more - as long as 25 years
If they have a mixed dementia - i.e. Alzheimers and vascular dementia then the time span may reduce to 5 years
There is no CONCRETE time span for each stage so he told me and it does vary widely between individuals. Sorry that is not more helpful - just telling you what I was told by two eminent specialist in their field
I suspect you are looking for more concrete answers. As the phrase goes, when you have seen one person with Alzheimer's, you have seen one person with Alzheimer's.
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!
My M
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