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Assessing the usefulness of stages

marionq

Registered User
Apr 24, 2013
6,115
Scotland
Some people think the seven stages as described by the Alz Soc are not useful and look at other ways of charting progress/ deterioration of dementia. My own feeling is that I can see a chart for my own behaviour/reaction just as clearly as I can see one for dementia and wonder if it is the same for all. I do consult these stages to see where we are.

Pre diagnosis: my husband's decision making and judgement baffled me and did a lot of harm to our relationship even though he seemed untouched by any concern. I lost some respect for him and have struggled to recover that .

Diagnosis: when I told him that there were drugs which could slow down the rate of memory loss he was keen to go to the GP. This was more like the trust and cooperation which was our normal relationship. Memory clinic, blood tests, brain scans etc and a diagnosis of AD. I threw myself into finding out everything I could and a year of frenzied activity followed with walking, swimming, theatres, Alz groups, holidays. I thought I had cracked it and could keep this illness at bay. I was wrong.

Post diagnosis: after 18 months the deterioration began to overwhelm me with constant repetition of obsessions and delusions. Other commitments built up and I had no reserves of energy and time to deal with them. The following twelve months have at times brought me to a new low.

Mid stage: John is a definite stage 5 now on the Alz scale with elements of six thrown in especially extreme wandering. He is otherwise healthy and happy but very restless. Medication is geared to calming this down and getting sleep and works well most of the time. Our relationship is very much carer and cared for but I have a much better understanding of why things went so wrong at an earlier stage and that it was largely out of his control.

I don't know what the next years will bring but I feel better prepared with knowledge and at the same time less prepared as time and age eat away at ability to tackle the demands and unpredictability of this illness.
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Some people think the seven stages as described by the Alz Soc are not useful and look at other ways of charting progress/ deterioration of dementia. My own feeling is that I can see a chart for my own behaviour/reaction just as clearly as I can see one for dementia and wonder if it is the same for all. I do consult these stages to see where we are.

Diagnosis: when I told him that there were drugs which could slow down the rate of memory loss he was keen to go to the GP. This was more like the trust and cooperation which was our normal relationship. Memory clinic, blood tests, brain scans etc and a diagnosis of AD. I threw myself into finding out everything I could and a year of frenzied activity followed with walking, swimming, theatres, Alz groups, holidays. I thought I had cracked it and could keep this illness at bay. I was wrong.

Post diagnosis: after 18 months the deterioration began to overwhelm me with constant repetition of obsessions and delusions. Other commitments built up and I had no reserves of energy and time to deal with them. The following twelve months have at times brought me to a new low.

I don't know what the next years will bring but I feel better prepared with knowledge and at the same time less prepared as time and age eat away at ability to tackle the demands and unpredictability of this illness.
Marion I can understand all you are saying; about 2 years before Pete was officially diagnosed I thought we were heading for the divorce court. Pete had lost all empathy with me and our relationship had up til then been very intense-we told each other everything. Eventually, by looking on the web, I KNEW he was suffering from Dementia-even though the Doctors said he wasn't:eek: When he was officially diagnosed (after yet another crisis which saw him sectioned again) my heart was so full of pity for him, and I felt so full of remorse because for a couple of years at the beginning I hadn't been as considerate as I should have been. The diagnosis showed he was at moderate/low severe stage-which is quite a late stage. I was horrified when I saw what COULD be in front of him.

Yes, I too was so tired that I hit a low, depressive period but looking back I think I can say that I did my best for Pete. I wish I could say the same from some of the 'professionals' we had to deal with:eek:

Throughout it all I never thought that Pete would end up in care (do any of us think that can ever happen?). So that was my low point. At the beginning I too thought that I could crack the disease and cherish Pete so much that once again we would be the close couple that we had been previously. It was never going to be. I then reached acceptance up to a point. I had tried everything that I could think of -coconut oil-stimulating activities-holidays- to no avail. I had to accept the inevitable-so sad, so heartbreaking-above all so unfair.

Yes this illness is so unpredictable, we cannot plan ahead or look forwards. We end up living for the moment-valuing the good times and hoping the bad times will gallop on quickly. It was easier for me than so many other Carers on here; I am reasonably young and my physical health is good (apart from a broken heart) I have absolutely no idea how Carers cope when they have their own health problems to overcome-I salute those who do.

Take care Marion and don't look too far ahead.

Love,

Lyn T XX
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Thank you Marionq and LynT for your thread that is exactly how l feel, and have done for many years, l feel heartbroken we had such a very loving relationship for most of our lives, l was 15 when we met, now he doesn't know who l am most of the time, life is so hard for all of us here on talking point, and for so many people all over the world. I feel touched by your words.
 

Mibs

Registered User
May 26, 2014
73
Derbyshire
My 'sainted' mother once referred me to my wedding vows - for better or worse, she said - you've had the better, now get on with it.
All your comments resonate with me - word for word, exactly detailing the last 15 years of our marriage, but as he is the love of my life, and has been for 51 years, I find that at last my mother and I agree on something - and I hope I will have the strength to 'get on with it'.
The people on this forum are giving me that strength.
Mx
 

Mommidizzle

Registered User
Mar 15, 2012
44
Mari ..... i so can feel you pain |!!|

My Man was always my big strong strapping superman !! (6foot6 and 20 stone plus but gave the most amazing cuddles and kept me safe...... i never had to worry about anything, money, bills, compliments, gifts, were all his bag and he did it all so beautifully!!)

I MISS HIM SOOO MUCH !! :(

Now its just me and he is disappearing before my very eyes every day !! i hardly recognise him these days!! he has lost weight and i really dont think he knows who i am most of the time !! let alone anyone else ................. i wish it could all be over .......he would be mortified to know how it is now ?? xxxx
 

marionq

Registered User
Apr 24, 2013
6,115
Scotland
Thank you all so much for replying. I wish you had not had the same experience yet it is a comfort to know you are surviving it.

I was low when I wrote that as John had been missing for ten hours with a big police search. He is fine and has no memory of it. Endless calls from social services which will probably amount to a hill of beans!

We can't get past the simple truth that there are too many people needing access to too few facilities.
 

Mossyanne1

Registered User
Feb 10, 2015
45
I feel so sad that there are so many of us trying our best knowing these illnesses are progressive and we are losing the ones we love day by day. My OH has gone to day care today, he s having awful delusions during the night at the moment and they go on and on. Gave him a lorazepam in the end just to calm him down. It is all so hard to know how to cope sometimes, but I find this forum so helpful.


Sent from my iPad using Talking Point
 

CAD

Registered User
May 1, 2015
13
Husband 63 diagnosed with AD also Agenesis of the corpus Callosum and heart desease

My Husband of 63 has been diagnosed with AD Agenesis of the corpus callosum and heart desease, was ok until September 2014. I have been trying to find out if having 2 degenative brain conditions and heart problems will shorten his life quicker than just having 1 brain condition . can any one help me with this ?
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
I can only speak from personal experience but feel empowered to say this - what difference does it make to the sufferer which Stage he/she has reached in this dreadful, terminal illness. It only matters to the watcher/carer because as human beings we like to be prepared for the worst that can happen! What is the bottom line with dementia - I think we all know that so my attitude was, is and always will be - enjoy every day with your loved one, come what may, as though it is your last and don't waste too much energy on the what-ifs and maybe's. (I feel I have spouted this before somewhere on T.P. - forgive me). Some days will be good and many will be awful - but all will be precious. I am sharing your pain, all of you and sending you loving thoughts. WIFE
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
I can only speak from personal experience but feel empowered to say this - what difference does it make to the sufferer which Stage he/she has reached in this dreadful, terminal illness. It only matters to the watcher/carer because as human beings we like to be prepared for the worst that can happen! What is the bottom line with dementia - I think we all know that so my attitude was, is and always will be - enjoy every day with your loved one, come what may, as though it is your last and don't waste too much energy on the what-ifs and maybe's. (I feel I have spouted this before somewhere on T.P. - forgive me). Some days will be good and many will be awful - but all will be precious. I am sharing your pain, all of you and sending you loving thoughts. WIFE
totally agree wife, every day is precious xxx