1. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi All,Its that long since i posted a thread i thought i had forgotten how to do it! Mum has not been good lately between bad knees and gout in her hand we have had a pretty bad time.Last week her CPN came and did a MMSE with her the last test she did which was 5mths ago she scored 14 on this one she scored 5 and she was having a good day! it seems that when she is in pain her whole body shuts down she cant walk wont eat or drink and is totally confused but she can get up the next day and be fine i really dont know what to make of this its wearing me out one day i think she is dying then the next day she bounces back.Is 5 a really bad score?and are we in the last stages and hoe long will it last? Iknow these are impossible questions but i am really struggling here.STORM
     
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Just to let you know, I know the feeling of thinking that one day they are not going to see out the week and the next day thinking this could be another 5 years! It is one of the many difficult things about the dementia experience.

    Hard to mentally cope with too because when i think my dad is going to die very soon there is a sense of desparately not wanting him to and then when i think he's going to last forever and have all this pain (not just physical) for ages yet, I'm not cheered by that thought either! (and I am selfish here too as well, I don't find this long winding road downwards easy either) Then I feel terrible for not wishing him to live long, all the while knowing that there is a part of me that never wants to let go of him. Who's confused yet? I am.... :confused: !

    I often wish someone could give me firm stats on the length of time this journey is for, either they can't because everyone has different journeys or because of medicine stats change. Dad is now stage 7 I believe, which means he's running out of time, but then sometimes he looks so strong and then you never know what medicine can do. And I sound horrible trying to calculate the time. Its just so hard running and not knowing when you are going to be told to stop. Can I run this hard if its going to last a lot longer yet? If I don't run hard enough now am I going to regret this later if it all ends too soon?

    I say again, I know how you feel on this issue at least.
     
  3. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Nat,Reading your reply was like having my thoughts put on paper, i to wonder sometimes who is going to give in first me or mum its so hard when you never know what you are goining to face from day to day or even hour to hour.I have come this far and i really do want to keep her at home till the end but it worrys me when she totally goes off her legs its a mammath effort to get her to stand and then she as no idea what you are trying to tell her to do.Will this nightmare ever end?Sorry to be so negative just tired.STORM
     
  4. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    I have these feelings too, I find it confusing and unsettling, when one day my husband is sleeping all day, not eating and has lost interest in everything, then suddenly the next day he's almost 'normal'. I begin to doubt myself, have I got this right? Maybe he's o.k. and I'm misjudging him. Then wham, back down we go!
    It's like you can never be on an even keel, you're never certain how to be....the hardest thing I've ever had to deal with. I'm literally living one day at a time and taking it as it comes, how else can you live with it? :confused:
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Hi Stormy

    So sorry to hear things are tough. You are doing a fantastic job. Be proud of yourself, it's tough.

    Sending you a big hug for courage.
     
  6. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Storm,
    I can only tell you what the neurologist shared with me when I pressed him for some details of what is ahead. He told me that once they loose comprehension, just do not understand anything, it goes downhill very fast. He also said my Mom will get there in between one and two years. She scored a 15 on her MMSE last month. Since then she seems to have declined even faster though. I think it is very individual as to how fast and how hard they fall.
    I feel the exact same way you do, I will be relieved and at peace when Mom goes......only with death will there be health for her. But I can't fathom not having my Mom in my life, it will crush me.
    Let us just try very hard for AD not to take more from us than it has to. There will be life after this and lets lead a good and happy one because you know that is what they would tell us to do if they were their old selves.
    Take care,
    Debbie
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    My experience with Jan has been that, once the dementia started to kick in, things did go downhill fast.

    But that is in terms of comprehension, or our ability to communicate through speech. Now she is a challenge to 'talk' to - most of the time I use physical means to comunicate - touch, cuddles, squeezes. Because she is losing even the ability to crawl now, we often spend my visit on our backs on the floor mattress, with occasional leaps by me as she tries to lever herself up by putting her bony elbow in some rather painful places.

    Jan is still strong as an ox, and she still eats more than me each day.

    My point is that there is a difference between comprehension and the physical.

    For Jan, already 15 years into this, she - and I - could be facing 2, 5, 10, 15 more years of physical decline before a virus hits her. Or it could hit her tomorrow.

    She has declined physically, but that is in terms of her ability to stand, walk, look after herself in any way, to see, to speak, and slowly, her ability even to crawl on the floor.

    That is the challenge. Nobody knows how long we have. There can be no planning. There can be no future that is comfortable for either of us. I'm on edge all the time and I dread phone calls that come in the evenings, unexpectedly.

    Other people with dementia, about the same age as Jan, have moved into her home, and had become rapidly worse within the space of 6 months, and died.

    Jan is strong, and in a bizarre way, I'm very proud of her for fighting so hard; I tell her so.

    But I wish she would stop doing so, and be at rest.

    I have no idea how I will handle that, whenever it happens.
     
  8. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Thank you everyone for your replies it really does help to know you are all out there because only someone that is living through this can understand. Bruce i feel the same about mum sometimes i wish she wasnt so strong she is 92 and iwish she could slip away now at home and with dignity please dont misjudge me i love her and will carry on doing all that i can for her but she is losing any ability to enjoy life the bad days now far outnumber the good days.STORM
     
  9. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    ME AGAIN i forgot to ask does anyone know how bad the score of 5 is on the test i know i asked before but i am facing a wall of silance with the professionals.STORM
     
  10. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Storm,

    Apparently the last time my Dad took the test he scored 12, that was about 3 years ago, he hasn't taken it since because it made him too upset.

    Dad is in last stages of the disease now. Apparently 5 is quite low but I don't know if Australian tests are different? Or scores for early onset are in anyway different to those of older sufferers
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Storm

    iwish she could slip away now at home and with dignity please dont misjudge me i love her and will carry on doing all that i can for her but she is losing any ability to enjoy life the bad days now far outnumber the good days

    I understand entirely.

    does anyone know how bad the score of 5 is on the test

    I've heard people say that a score of 10 is low, so 5 is very low though I have no concrete knowledge about it.

    When on a panel at a conference this year I picked up a pad of the MMSE tests.

    The tests give 1 point each for repeating a phrase, reading a command and acting on it, writing a simple sentence, copying a simple drawing of two polygons.

    there are 3 points each for testing learning skills - repeating a number of words, recalling those words a few minutes later, following a 3 stage command.

    there are 5 points each for knowing the [year, season, date, day, month..1 for each], knowing where you are [country, county, town, building, floor..1 for each], spelling a word backwards.

    In total 30 points.
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I understood that 12 was the bottom line?
    Any body know any more?
    Norman
     
  13. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I found this on the nice.org.uk site:

    MMSE (Mini Mental State Examination) scored out of 30 (where 30 is best),

    • Mild Alzheimer's is usually linked to an MMSE score of 21 to 26
    • Moderate Alzheimer's is usually linked to an MMSE score of 10 to 20
    • Severe Alzheimer's is usually linked to an MMSE score of less than 10

    Not sure that it's any help.

    Thinking of you Storm.
     
  14. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi All,

    Norman, I think you might be thinking of the NICE guidelines which stated that drug treatments were recommended for those with AD and MMSE scores of 12 or more:

    http://www.nice.org.uk/page.aspx?o=14406

    I also found this rather interesting article by a GP, writing for other GP's, called "MMSE: Where Does It Fit ?":

    http://www.theberries.ns.ca/Archives/SPRING2002/MMSE.html

    One thing that I took from that article was the limitations of the MMSE - particularly at the higher and lower ends of the scale.

    Take care,

    Sandy
     
  15. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Sandy,
    I found the article to be very helpful and the first time the MMSE test has been explained fully. Thanks for posting it!
    Debbie
     
  16. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Hi All, thanks once again to you all,the pages you posted helped alot Sandy. I am just going to get on with things and cope the best we can, today as been ok and you guys and gals have helped a lot. Never under estimate how much comfort you give through this forum. STORM
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Sandy

    Excellent article.

    You seem to have an endless list of similarly good references!

    Really helpful - thanks. :)
     
  18. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi All,

    Thanks for the positive feedback on the article Debbie, Storm and Bruce. I really do find it satisfying to try and mine nuggets of useful info from the internet. I still believe in that old addage that "Knowledge is power" - even if the knowledge can seem difficult at times and the sense of power fleeting.

    Storm,

    I really do empathise with your current situation. My father-in-law (84) has both mixed dementia (AD and vascular) and myeloma (a form of bone cancer). He is being cared for by my mother-in-law (80), with some assistance by outside carers. Right now he is still mobile within the home. They live approx 90 minutes away from us and we are the closest family.

    My concern is similar to yours (I think) - what will happen when he is no longer mobile? Of course if he has a health crisis and is no longer mobile, he will probably go into hospital. But what if it is a slow decline, not really requiring a hospital stay?

    My husband and I have discussed this with my mother-in-law. We know that the Occupational Therapist can arrange a variety of lifting devices and a team of 'round the clock carers can be arranged. However, these things can take time to put in place and, more importantly, require constant management to keep them running smoothly.

    This is something my mother-in-law is not sure that she could manage, even with support from us. So, we have looked into care homes with nursing licensed to take patients with dementia. There are not that many in their town, so we have had to look at towns 10-15 miles away. We have found several good homes, where people with dementia are treated with care and dignity and supported until the end of their lives (I find that phrase very hard to write - but really that is what we are facing).

    We now have my father-in-law's name down for three homes. It may be that such a place will never be needed, but we feel that this is a responsible insurance policy for the future.

    I saw some earlier posts that you made about respite. Has anything happened on that front? Have you had a chance to just investigate care homes in your area so you could have a better idea of the options available?

    Many people talk about wanting to be able to care for their loved one at home "until the end" and that is a very selfless and caring ideal. I am beginning to see AD as more like a relay race, where it's important to be able to know that you can pass the baton on to another team member, even if it's just for one lap.

    Take care,

    Sandy
     
  19. daughter

    daughter Registered User

    Mar 16, 2005
    824
    #19 daughter, Sep 21, 2005
    Last edited: Sep 21, 2005
    "It may be that such a place will never be needed, but we feel that this is a responsible insurance policy for the future."

    Keeping ALL the options open seems most sensible to me. My sister and I also arranged a visit to a Care Home (we were lucky enough to find a good one straight away) and Dad's name went on the list. I didn't allow myself to believe that it would really happen, it was just in case. His 'space' became available fairly soon after that although, in our case that was probably the best thing. There can never be a 'right' time for these things, but Mum was at the end of her tether.

    "I am beginning to see AD as more like a relay race, where it's important to be able to know that you can pass the baton on to another team member, even if it's just for one lap."

    I love the analogy Sandy! Mum felt awful guilt when Dad first went into the Home, even though from the outside we could see that not even Wonderwoman could have survived the constant struggle with Dad's behaviours - let alone the aggression and wandering. Mum lived on her nerves for quite some time.

    My hat's off to all those who carry on with caring at home, even with lots of help but, reluctant as she was, Mum eventually had to let Dad go before she became physically ill.

    Now that she visits every afternoon, she takes the baton with great gusto and runs like the wind, knowing that she can pass it on for a while to catch her breath again. :)

    Actually, that's not strictly true - sometimes she drops the baton, but there's plenty of others around to pick it up for her.
     
  20. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    thanks

    Sandy, thanks from me too for the mmse article.
     

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