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Not Sure What Stage My Aunt is At

Discussion in 'Middle - later stages of dementia' started by BB1, Jun 9, 2015.

  1. BB1

    BB1 Registered User

    Jun 9, 2015
    2
    Hi, it's my first time posting and I'm sorry if this is a bit of a ramble but I'm just looking for some advice or info from those of you with experience of this awful illness.
    My Aunt was diagnosed with Alzheimer's around 6 or 7 years ago.
    No very specific information was given - I couldn't even say which form of Alzheimer's she has. She was given medication, sent home and more or less left to get on with it.
    My parents - who fortunately live next door to her - care for her as best they can (they're in their 70's and were already looking after her as she has MS, also - which she also has been left to get on with after diagnosis) - I help out where I can, and stay at their place from time to time while they go away on the very rare, and very short breaks they take from time to time, but, as I'm sure many of you will know, her illness has had a huge, and quite restrictive, impact on their lives.
    Through our own research, which took ages, we've ended up arranging for a homecare service two or three times a week, to help her shower, as she wasn't even washing.
    She's incontinent (bladder, though she has the odd accident with her bowels), won't eat much "proper" food (she'd scoff sweet things all day if she could, though), her short term memory is very bad, and she rarely if ever knows the day of the week. Yesterday when she woke up she asked if it was morning or night time.
    She does recognise us though and there are many other symptoms listed for the illness that she doesn't seem to fit (although it's like that with her MS, too!)
    My question is, does anyone recognise this stage in it's progression? Because I think my parents are totally unprepared for what might come next - they're doing their very best but they have no understanding of it other than watching it unfold and haven't been given any advice - every so often my Mum rings the GP and gets him to book in a home visit to my Aunt, otherwise no check on her health would be done at all, but all he does is check her blood pressure.
    Sorry if this is overlong, but I'm trying to get a better idea of how I can help all three of them, really :(
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    19,039
    Male
    North Manchester
    "...does anyone recognise this stage in it's progression?"

    Personally I do not subscribe to the detailed staging of progression.

    Having said that I would say your Aunt is 'mid stage'.

    From your post it appears to have taken 6 or 7 years to progress to this stage so it may take another 6 or 7 years to get to 'end stage', or it may be much shorter.

    My method of assessing progression was to compare what can be done now with what could be done 3 months/ 6 months/ 1 year ago making allowance for acute problems at either end of the period.
     
  3. LorettaBoretz

    LorettaBoretz Registered User

    Apr 9, 2013
    1
    Hi, I care for a few people with Dementia (all sorts of types) and it is very hard to judge how fast it may progress and all kinds of environmental factors play a part.
    I'm very sorry to hear about your struggles,:( my family are starting to go through the same and I'm feeling similar to you even though I am a carer and have "dealt" with it as an outsider for years. Supporting the family is generally harder than caring for the loved one suffering from Dementia so; a) you are NOT alone and b) NEVER be sorry. You can only do your best, as you are only human. I am sure you are helping more than you realise anyway.
    Although I don't take too much from "labeled stages" due to my profession, I have often found Teepa Snow's Gems method a lot more enabling than a number. Teepa Snow has many videos on YouTube about dementia and supporting the family, maybe you might want to have a look at some.
    The most important thing you all can do is just love your aunt (as I'm sure you all do anyway) have you been in contact with Admiral Nurses? If not, they might be able to provide some care if the other carers are from private companies. There is also "respite care" where your aunt could stay at a home for a few days to see if she likes it and also give your family the crucial break they need from time to time. The Dementia helpline 0300 222 1122 run by Alzheimer's Society (open in office hours and 10am-4pm weekends) who could maybe give you some more ideas.
    There is also a group called Join Dementia Research where you can register yours or someone else's interest.
    If you thing "home devices" then check out livingmadeeasy.org.uk for some ideas.
    Whatever you do, I'm sure you're doing brilliantly. Keep strong and keep us posted. We're always here for support!! And sorry, my reply is a bit of a rant too :p
    Blessed be,
    Kat
     
  4. BB1

    BB1 Registered User

    Jun 9, 2015
    2
    Thank you so much for your replies - it's a relief just to get it out, in a way.
    Nitram, you make a great point about monitoring what can be done now compared with months ago, etc., when you see someone day to day, you can lose track of when changes occur, so I think maybe we need to start noting whenever they do.
    Kat - so much useful information! Thank you, thank you, thank you! I'll certainly check out those You Tube vids, and the websites you mention.
    Again, thank you both so much xx
     

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