Concerned about results of brain scan

Discussion in 'Younger people with dementia and their carers' started by bleep, Jun 20, 2007.

  1. bleep

    bleep Registered User

    Jun 20, 2007
    Been reading some of the threads on TP for a few weeks now since the consultant told us that he is pretty sure that my Dad has early onset AD (he is 59) and I've just had a phone call from my step mother with the results of his brain scan. She says that the brain has shrunk that much that the consultant was actually shocked when he looked at the scan and says that my Dad's brain is what he would of expected of an 84 year old? The consultant is also very concerned at my dad's rapid decline over the last 6 months.
    We first noticed that there was something wrong when we visited at Christmas, Dad wasn't taking part in conversations like he used to and quite honestly we thought he was going deaf and slowing down a bit (he took early retirement last year). On the phone, when my step mother passes the phone over, his only reply to everything is 'Okay, right' and even that is after a ten second pause. When I visited a month ago, he was struggling to give one word answers and even then you weren't entirely sure if he really meant No (or Yes). He will watch a TV programme then flick the channels over and then end up watching the exact same programme again on its +1 channel and not even realise. My step mother keeps telling me that he is still there and loves me dearly (and not to worry) but I can't see anything there? There is a shell of someone who looks very much like my Dad but that person is a total stranger, I can't see any sign that he is still in there? I feel terribly guilty about that and I don't know what to do? I'm seem to be making excuses up to avoid visiting them because I can't stand seeing him like this but I feel so guilty for not going at the same time.
    I don't know what I am really asking here. I think I just need to chat to someone as it is all going round and round in my head endlessly at the moment.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello bleep

    It is very difficult to come to terms with the way that someone who has dementia changes .

    When people say "they are not there anymore", meaning they can't recognise their loved one, I tend to think to myself..."where would they have gone then?"

    The problem is that, as the brain is more and more affected, all sorts of things that are driven by the brain no longer function as they once did. Just about everything is driven by the brain, or informs the brain so it can do things, so what we may observe is likely to be quite different than we are used to.

    But that doesn't mean they are not still in there.
    Your step mother lives with your Dad all the time and she will see flashes of his previous self, and she will know he is still in there.

    People who are not there all the time may miss those flashes, especially since the person with dementia may well behave differently when a 'stranger' is there - and anyone who is not there constantly may now be a stranger.

    It also happens that the person who is there constantly is considered a stranger.

    It is of course very difficult for us to see them as we knew them when they have changed so much, but I always think - we can spend some time with them feeling uncomfortable but perhaps making them feel wanted.... but they have no choice, they can't go back to notmality afterwards.

    Don't feel guilty.

    The choice is yours whether or not you visit, but also think that in visiting you are also supporting your step mother, who may benefit from your being there as much as your Dad.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear bleep,

    I understand how difficult it is for you to see your dad as a shadow of his former self, and wonder where he is.

    I can only say one thing to you. You say:

    There is a shell of someone who looks very much like my Dad but that person is a total stranger;

    well perhaps that is how you see him, but I wonder how he sees you. You may never know, but he still might be seeing you as he always has, and so you must try to be with him as you always have been.

    I hope I haven`t been too blunt, but this is what sprang to mind, as I read your post.

    Take heart from your stepmother. As Bruce said, she lives with him fiull time and will know where he is.

    Take care xx
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Ht there, and welcome to Talking Point

    You're obviously going to find it distressing to see the changes in your father, and I think It's a perfectly normal reaction. However, I also think visiting is important no matter how much it distresses you. Now some people can come to terms with the changes and get something out of the visit, and I really admire them for it, but I am someone who never has. Part of being an adult is that sometimes we have to do what we don't want to do, either because it's good for us, or good for someone else. So I visit. Not as often as I would like (I live 3500 miles away from my mother) but I visit. I do try to keep each visit relatively short, although when I'm there I'll visit several times a day. If I find it too much to handle, I'll go for a walk and then come back.

    You mention guilt - guilt seems to go with the territory no matter what you do: guilt that you can't make them better, guilt that you can't make them FEEL better, guilt that you don't do enough. I think the most corrosive guilt from the perspective of your long-term emotional well-being though is the guilt of lost opportunities, because when those opportunities are gone, they are GONE. It's one thing to feel guilty that you are healthy and they are not: rationally you know there is nothing you can do about that. It's another thing entirely to know you could have reasonable done more and chose not to: that's the guilt that keeps on giving.

    I'm not talking about making heroic efforts and putting your life on hold, or spending vast sums of money, or anything extraordinary. Simply a bit of time here and there. Obviously sitting there in floods of tears is not going to be particularly helpful, but tears after the visit: well we've all been there. Let's face it, it's early days yet, and you may be expecting too much of yourself to "come to terms with it". Some of us never reach that point and that's OK too: this is a very unfair thing to happen to a person.

    I recognise that the family dynamics when a step-parent is involved can be a little fraught, but perhaps you could think of things to do with your father that would give your step-mother a break. Also, having something to actually do can make it a bit easier emotionally. When my mother was still relatively mobile a drive in the country was a good pastime, or a walk in the park (I walk, she gets pushed). There may not be much in the way of communication, but at least she knows I'm there. It's not perfect (I'm not perfect) but it's the best I can do.

    Best wishes

  5. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Bleep,

    So many wise and sensible things said to you in response to your post!

    Part of being an adult is that sometimes we have to do what we don't want to do, either because it's good for us, or good for someone else. So I visit.
    Absolutely! This is something you need to do for the sake of all involved - yourself, your step mother and your Dad. Whether you like doing it, enjoy doing it or hate doing it and feel immeasurably distressed by the visit, is immaterial! Sorry to be harsh! I know you are very upset and it is a very painful time for you, but the reality is that you are only visiting. You are not doing the caring - that is down to your step mother.

    Too many people "give up" on people with dementia because they find it "too hard". I know you are not one of those people, because you have posted here.

    Just "grit your teeth" and visit as regularly as you can. I think you will be pleasantly surprised (after a while!) to find it is easier than you thought. Staying away and feeling guilty is really much harder!!

    but perhaps you could think of things to do with your father that would give your step-mother a break. Also, having something to actually do can make it a bit easier emotionally.
    Again, absolutely!! If you can give your step mother an hour or two on her own now and again, it will be a blessed relief to her. Whilstever she feels she can cope with caring for your Dad, you are not required to take over full time care or responsibility. If she gets completely worn out and can no longer cope, you may find yourself with a much greater responsibility than just visiting.

    I probably seem very hard hearted and unsympathetic!! Truly, I DO feel for you!! It is VERY hard to see a loved parent in this awful position. I WISH I could make it easier for you - but sadly, no-one can.

    What I DO know is, that if you behave in a caring, loving and supportive way towards your Dad and StepMum now, your guilt will lessen. You will feel better able to cope with the whole thing (altho' it won't always make you feel better - this is a devastating illness). You will develop strengths you didn't know you had.
    Above all, you will make your Dad's final time on this earth better - even if he doesn't realise it consciously.

    Sending you my best wishes for strength and courage.
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Bleep

    Lots of good advice for you there. I know it's hard for you, watching your fathe deteriorate. But believe me, he is still there, he still loves you, and he does still want to see you.

    There are two points I's like to make:

    Firstly, for yourself. If you visit regularly, the deterioration won't be so noticable. If you leave it for a week or two, it will be more marked, and there is a danger that your father will cease to recognise you. People with AD do neeed constant reminders, and a regular routine.

    Secondly, for your step-mum. If you are finding it difficult coping with the lack of conversation, imagine how it is for her, living with it 24/7. Also there is a possibility that she will grow to resent your lack of help, making the whole family relationship difficult.

    You've been very brave to post here. We'll all give you all the support we can. I'd like you to consider the positives, about how you can make life easier for your dad and step-mum. You've already taken the first step.

  7. katherine

    katherine Registered User

    Sep 5, 2006
    AGain i think people's advice is right - you need to visit for your dad, for your step mum but also for yourself. If you visit more you will come to terms with it - and in time you will be able to have a good relationship with your father as he is now - a very different relationship from before but it can still be loving and good. It'll always be sad but you won't feel sad all the time. Sometimes things will happen which will make you happy and laugh. But for that i think you have to be involved. It is difficult but the alternative is a life feeling guilty that you should have done more. And of course your dad is still there. He is just different. We all change and grow old and can become ill but we never stop needing love. Even if it gets to the point where your dad doesn't know who you are, he'll know that you're familiar and he'll be able to feel love from you which must be a comfort.
    My mum has got worse very quickly over the past year. This time last year she could still ride a horse. Now she can hardly speak if i'm honest - but she is soooo lovely (she hasn't always been - at times she's been a nightmare) but it's so lovely to see her feeling peaceful. I know that if i wasn't involved as much as i am i wouldn't be at peace with myself. I think you have to ask yourself honestly how much you feel you need to be involved and then be involved that much. Don't give up on your own life at all, but support your step mum and show your love to your dad.
    Good luck to you
  8. bleep

    bleep Registered User

    Jun 20, 2007
    Thanks for all your replies. Of course I know you are all quite right but sometimes you just need someone else to tell you something you already know. I hope that makes sense. They are travelling over to London this weekend and will meet up with my aunt and uncle for Sunday lunch - my aunt had already asked me to go and so I shall take your advice and go too (I had said that I was working) - it's not quite so far to travel and it will only be a short visit. Can't say I'm looking forward to it but I am supposed to be a grown up after all - don't really feel like it when I'm talking about my Dad though.
    I know that my step mum could do with some support as well, she is being amazing considering everything that has happened in so short an amount of time(they only got married this time last year) including trying to hold together a family that she barely knows - we have a lot to thank her for. I can't even begin to imagine how she must be feeling. My sister is going over to visit the end of July so I'm going to stop putting off booking my flights and go across at the same time. Suppose I'd better stop typing this and sort out some travel arrangements, shouldn't I?
    Thanks again.
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Bleep

    I've obviously missed something here. Where do your dad and step-mum live? If it involves booking flights, it's obviously too far for the regular visits I was suggesting. Sorry if I was too hard on you!

    Hope the family lunch goes well, and good for you for deciding to go.

    I'm a step-mum too, and I appreciate so muh the support I get from John's sons.

  10. bleep

    bleep Registered User

    Jun 20, 2007
    Dad and Sue live on the Isle of Man - not a million miles away but still a bit of a hike. Just got back from the family lunch and I am glad I went. Dad has got worse since I saw him last month though - his movements are more restricted and his speech is almost incoherent (still one word answers too). My aunt (Jill) was quite shocked at how fast he has gone down hill as they haven't seen him in 3 months so we had a good chat about everything after they'd left for the airport.
    We are both concerned that we are still without a formal diagnosis of any kind although they have said it's almost certainly Alzheimers but with something more to it as it is progressing so rapidly (this is nearly 4 months down the line) and that although Dad is being refered to a Neurologist on the main land, he only travels over to the island once a month and even on the main land the waiting list is probably that long. At the rate my dad is going down hill, neither of us think that he can afford to be waiting that long for a diagnosis and Sue has been told by Social Services that she will get no help until there is a formal diagnosis (like having your brain shrink that much doesn't count?). Any ideas on how to speed things up? My aunt is going to offer Sue the money for an appointment in the private sector if that will help speed things up - things can't really move forward until we get some kind of diagnosis.
    Also the subject of Wills came up as I am concerned that with dad only getting married to Sue last year and then buying a house together, his Will may not be up to date and therefore invalid. My aunt and I both feel that if he does not sort things out soon he may not be deemed mentally competant to do so. We are also going to encourage Sue to get an EPOA as soon as possible - all this should me that she should be on a better footing financially at least.
    It's all quite a lot to take in to be honest as it has all happened so fast. Oh and don't worry about being hard on me - it's nothing I haven't been saying to myself a hundred times already!
    It was good to talk a few things through today if nothing else so I am glad you all convinced me to go.
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Hi Bleep

    I'm glad YOU'RE glad you went. It is a problem seeing people infrequently: the downturns can be quite dramatic.

    Hopefully someone can give you some pointers on just how to get a faster diagnosis. I just wanted to mention something that you may already be aware of: marriage does indeed invalidate any existing will. If he died tomorrow he would die intestate, so that's something that shouldn't be put off: hopefully it's not too late. You can, I believe, actually be quite far along and still be able to make a will (strangely enough).


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