1. LindseyN

    LindseyN Registered User

    Aug 18, 2005
    10
    After being diagnosed with vascular dementia a few months ago after a stroke my Grandad has deteriorated rapidly. Even after the stroke his appearance was better than he is today.

    After reading many posts on the site I have been enlightened by the fact that most of his behaviour and illness symptoms are part of the dementia.

    My Nan has been told, as have my parents by the doctor that things will become increasingly difficult. So far his memory has been affected, he can't tell the time, he doesn't know the day of the week, he doesn't eat (except sweets), he can be abusive, rude, he spits out pills, refuses to go to day-care (even with the man waiting outside), tells my Nan she is mental, tries to hitch-hike to town, wants to call the police because he is being held captive....and the list goes on. If things are going to get worse, I am wondering how? It would be better for all of us to know what we are dealing with for the future.

    Does anyone have any information on what to expect towards the end? Sounds awful but we really have no information, other than - expect it to get worse.
     
  2. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Lindsey, Its a hard question to answer because no two sufferers are the same.I care for my mum in law who now lives with us i have found personally that the longer down the road of dementia she goes the easier the caring as become, i think this is because she as withdrawn into her own little world and as long as the routine she nows continues she seems quite content i suppose the dementia as taken over that much she is no longer fighting it.I do think routine is a major factor in helping people feel safe it must be very frighting when you do not understand even the simplest things that are going on around you.I MYSELF DO NOT KNOW WHAT ELSE we have to face in the future getting through today is my aim. STORM
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Lindsey

    From your message: Does anyone have any information on what to expect towards the end? I read that you may think the end may be near-ish.

    As Storm has said, each case is different, but from your description, I reckon the 'end' could be ages off yet. My wife went through the stages you describe several years ago, and while she has deteriorated [loss of sight, speech, comprehension ... I think ... , movement], I reckon she could have anything from a month, a year - to fifteen years left. There's no knowing, though five years is not unrealistic, I think, for her.
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Lindsay, yes, there is no real set in stone pattern to this darn illness. As our Norm says, just take it a day at a time. The fact sheets are very good and will I hope help to clarify some of your questions a bit. Please do keep posting, we are all at different stages on this path, so anything you say is bound to ring a bell with some one. Above all, never feel alone or afraid to speak of your feelings, we are all aware of the ups and downs of this caring lark! Love She. XX
     
  5. LindseyN

    LindseyN Registered User

    Aug 18, 2005
    10
    #5 LindseyN, Aug 18, 2005
    Last edited: Aug 18, 2005
    Thank you all so much for taking the time to reply to me. I have relayed a lot of what you have said to my family, and some of the other experiences I have read on this site.

    You wouldn't believe how important this site is - I found more answers here than anywhere else. I think one day at a time is good advice. I think in the onset you just want to know what will happen and will he suffer. He's a huge chunk of my life - I live just half a mile away. I moved back home 1 year ago from abroad and have 2 children - 5 years and 10 months. The eldest understands a little, but she chats away to him and makes him pictures, and he always loves it. That's great medicine sometimes.

    Thanks again everyone - I will keep reading and posting.
     
  6. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Vd

    Dad had a stroke in Oct 1998 and after a short time of hallucinating in hosiptal he was back to 'normal' quite quickly. The VD took a couple of years to set in though, his deterioration was more rapid during the last 2 years of his illness in a nursing hom.

    I can relate to how your G/Dad is reacting. Dad was great at docs appt as he would guess the day of the week (with 95% accuracy)...you could even tell her was picking it out of the air. Dad still right up to the end would keep his tablets rooted in his mouth until you turned away and it would come flying across at you, or he would hide them back in sandwiches that he refused to eat!! Day care was a nightmare and when we did get there he would try to escape all the time!

    When I think about those times before Dad got 'worse' it seemed harder as we were all trying to get used to Dad in a new sense. As the disease took hold more and more in some ways we got used to new Dad, but every stage is so very hard for different reasons.

    You're right. When Dad was alive this was a wonderful font of information and in some ways when I read posts like yours it reminds me of times when he would put my face cream in his tea and still try to drink it. It really upset us at the time as it reminded us we were loosing Dad more, but I remember him smiling, but frustrated about it and it makes me smile now. Dad fought for nearly 7 years for VD and as Bruce said, each case is so different. If Dad had been able to fight off his pneumonia he'd would have gone on for years. It was the one thing we didn't think about would get him....he had half of his lung capacity removed when he was young through TB.... it was the one thing he couldn't fight.... I'm sure you're Grandad will have the strength to fight all he can.

    karenx
     
  7. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Thanks for the memories Karen, I agree that now we can look back and smile at the hiding of the pills (having sucked on them for an hour) and the pouring of lemonade on his sunday dinner instead of gravy but at the time it used to hurt like hell cos as you said we were watching the blasted AD take over. My Dad too was so clever with so many things almost as though it was his way of winning little battles along the way. Now I look back and think "well done Dad, you showed us all".

    Lyndsey I hope you can see past the apparent battle he is having with those of you who are closest and realise it's his way of fighting the invisible destroyer.

    Kriss
     
  8. LindseyN

    LindseyN Registered User

    Aug 18, 2005
    10
    Thank you so much for writing back. At the moment we are just at the tip of the iceberg trying to educate ourselves about the illness.
    Trust me, every circumstance that is relayed here is helping our understanding. Everyone has been so generous..

    Old routines and ways of thinking have to change pretty rapidly to help all involved. My husband is a great help. He had to be rehabilitated after a coma and gives so much insight into a withdrawn state. He told me he knew exactly what he wanted to say, but it came out wrong, and that to him his thoughts were totally correct. The frustration at seeing familiar faces, and not being able to remember "who" they were was scary and upsetting. (he's now totally recovered, his accident was before we met). He said perhaps this is how Grandad feels. Like he's making sense and everyone else is wrong and confused.

    We'll keep caring, helping Nan and making sure he's ok.

    He's got a blockage in his neck, which they can't treat. The doctors have told us to let him do and have what he wants. I think that's good advice. He should enjoy himself whenever he can.
     

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