Decline in dementia.

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Im trying to plait fog a little but I want to describe just some of the things that are indicators of decline in my mother who has alzheimers and vascular dementia (mixed dementia)Alzheimers by its nature is progressive and Vascular is too but they progress differently so what am I actually seeing and can I tell which is which. Well the answer to the last bit is no but I thought it might help to know what I have been through in the last six years.


Hi Phoenix, my mom has never had a definitive diagnosis but I am certain vascular dementia plays at least a part. Mom has presented with a lot of physical symptoms that would put her much farther along the Alzheimer's scale early on than she actually was, so sorting it all out is a challenge!
It all started with a fall or two and we got Mum walking sticks. She was a little forgetful but aren't we all at that age (mum was 88 then). She has always been narcissistic and demanding and I could never please her so when she had a major fall and couldn't live alone any more I gave up work to look after her. In hindsight that was probably one of the worst decisions I ever made but hey everyone can have 20/20 vision in hindsight!

Things weren't easy and Mum became increasingly demanding and difficult if I didn't 'jump to it' straight away. In a fit of temper (because I wouldn't do something immediately) she threw the laundry down the stairs then attempted to clamber over it and fell, breaking her hip. And so the nightmare began.

Eventually when Mum had driven me mad over what day what time what month what year it was and I mean asking me 6 or 7 times an hour I recognised it as dementia and called the doctor for a diagnosis because I was now sure it wasn't just 'her getting older' as the docs had said before.

Tests indicated (not proved tests like that cant be done until after death - much use that is to the carer!!!) that Mum probably had mixed dementia alzheimers and vascular from the fall and the fact she probably fell due to a Transient Ischaemic Attack (often called a mini or micro stroke or a TIA for short)

She was prescribed donezepil (many people cant take this for it can have interactions with medications or simply that hey have an adverse reaction to it) and after about a month I noticed a real difference. No preoccupation with time and almost back to normal apart from her mobility but a wheeled walker sorted that out for her.

The consultant spoke to me about expectations for the future and they weren't good. Gradual progression of Alzheimers plus the step down of vascular dementia. I wondered what to expect and he told me this. No-one can tell you what it will look like it is different for every single person. There are recognised phases but not every person goes through each one or indeed in the same order.

Now I am a logical person and this simply didn't compute to me at all. Im not going to go into the phases because they are widely found on the internet but just to tell you the progression of one woman and I am going to list it so you know what to expect possibly at some time maybe but then again maybe not!! For such is the nature of dementia

Over the first 3 years and remember this can be much shorter for a lot of people or longer for some

First off forgetful
Needy - increasingly so
Minor urinary incontinence
Increased anxiety, anger and non acceptance of the disease when some young idiot of a doctor decided she ought to know even though I had TOLD him not to tell her
Demanding - increasingly so
Totally self centred and unable to mask it unless of course a doctor was present!
Lots of near misses when it comes to falls almost always centred around toiletting whether it be needing the toilet or having just been
Needing to be showered by me
Difficulty preparing a cup of tea and not able to make meals

Then over the next 2 years

Then came a set of urine infections and a massive step down -
Completely bladder incontinent and bloody angry about it
If it is possible even more self centred and totally disregarding of other peoples needs at all
Demand for me to stay with her 24/7 - (don't do it you would go mad) and not leave the house ever (that didn't happen either)
Inability to use phone
Couldn't follow an instruction verbal or written or in picture format
Slept much more of the day (and compensated by staying awake half the night and that is hard for carers)
Demanded I take an interest in her likes (nope never gonna happen)
Tried to exert control more than ever in an effort I imagine to try to keep the tight rein which would prove to her she didn't have dementia
Became quite low from time to time and 'woe is me' even though I was bringing her friends to visit twice a week
During this time several more urine infections because she wouldn't drink enough
Several impacted bowel issues because she would rather stuff her face with junk than real food - they are hard to deal with
More TIAs some while she was awake and some very evident in the morning after she had slept but TIAs can come whether awake or asleep
Decline in mobility from wheeled walker to frame
Unwilling to wash and dress hwerself

And now

Tired very very quickly
Refuses to walk
UNABLE to wash and dress herself
UNABLE to know whether she has had a bowel motion when sat on the commode
Very very unsteady when stood
Increasingly hard to get her to turn
Cannot get her into a car because she cannot follow instructions
May or may not know who I am although mostly does know
Has to be told firmly to drink or she wont
Has to be TOLD firmly to eat a meal or she wont
Uses any excuse to avoid eating all of which require me to test the water

Hiya cwillie its that impossibility of determining what is old age and what isn't that is causing many of the problems I think. If they ever find a means to scan for the issue life will hopefully be a lot simpler but in all honesty I am not sure that prolonging deterioration is a step forward. Find a prevention please but not something that will just prolong the inevitable for this is not an easy route for sure ...... getting old is not for sissies

Is she wheelchair bound now, or can she still walk when you help her?
I'm sorrry Phoenixdaughter, it looks like your mom's Alz and dementia has picked up the pace as far as progressing.

I think Phoenixdaughter mentioned she can stand but is very very unsteady, so she is more than likely wheelchair bound.
So 5 years down the road, there are no hallucinations? That makes me think this is not Alzheimer's at all. If she is 93, every day is a gift from God
Pam not all people with Alzheimers have hallucinations...some do some dont. It is far more common in people with Lewy body dementia and/or Parkinsons (the two seem to be closely linked) Mum only has hallucinations when she gets a urinary tract infection and I can assure you she most definitely has Alzheimers. It has been confirmed by 3 consultants ... all specialists in that field.
Cwillie she is wheelchair bound but can manage to stand and turn with a lot of help. The main problem being she thinks she has turned but her feet are just padding on the spot as it were. Toiletting is increasingly difficult obviously and getting her into bed quite an effort but I manage - some days not so well as others. I keep repeating the mantra it is not her , its the disease....some days thats not as effective as others though
My mom, too was diagnosed with Alzheimer's and she most definitely experience hallucinations and delusions. The Alzheimer's Association also has this article related to hallucinating in Alzheimer's.

Unfortunately, there is not a rule book on how dementia is to progress in anyone. Each experience is different, no two are the same.

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