Father diagnosed today. I'm totally lost.

Discussion in 'Recently diagnosed and early stages of dementia' started by LittleMe, Jul 5, 2019.

  1. LittleMe

    LittleMe New member

    Jul 5, 2019
    2
    I don't even really know how to start this. Bear with me.

    My father was diagnosed this morning. We're told it's a relatively early diagnosis. He's had serious short term memory problems for some months, signs of severe depression and anger/irritability that come and go. He still has days where he's fully 'him', funny and silly and active and energetic.

    Looking at the overall pattern, in some ways it's not a surprise. But I still feel in total shock. Stunned. My dad???

    He's devastated. Understatement Very very very tearful and upset. My mother is terribly upset obviously, but I do think she knew it was coming.

    I'm an only child - in my 40s - and I'm beside myself. I can't describe it. Terrified, crying with sadness for him and how is feeling, for us all at what this means, and for me 'losing' my lovely dad. It feels like a nuclear bomb has gone off in our family. Like the start of the end. Not MY dad, surely??

    Where do I go? What do I do? Where do we go from here?

    How did you deal with the diagnosis? How do you move forward from this absolute bombshell of grief? How do you just get on with life ever again?Can anyone please give me any advice or reading suggestions?
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    Hello @LittleMe and welcome to DTP.

    Getting a diagnosis is always devastating, even when you are expecting it.
    There are lots of factsheets here at the Alzheimers Society which you might find helpful

    https://www.alzheimers.org.uk/get-support/publications-factsheets

    You can always ask questions here as there are many knowledgable members. I think most of us just continue day by day.

    One thing I will suggest that I think is very important is for your dad to get legal stuff like his will and POA sorted out while he is still able to do it. I got my OH to do his by both of us going together and getting our wills and POA done at the same time, so he didnt feel "got at"
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,006
    Yorkshire
    hello @LittleMe
    a warm welcome to DTP
    this will sound trite, but ... breathe
    I remember the early days after diagnosis, after the shock, which kind of wasn't the shock of knowing something was wrong, that was clear, it was the knowing I had been right, as I was hoping I wasn't
    slowly I realised dad was not quite himself but mostly and would be, so I decided to make the most of having him and pretty much take each day as it came ... that is after putting a few legalities etc in place
    it is a form of grief for the man he was, and sadness at what was to be
    you've made the best step you could by joining us here ... you'll receive support, understanding and helpful suggestions, so read arounf the forums and post with anything that's on your mind
    for leaflets and such, there's the main AS site which also has links to the dirsctory of local services
    https://www.alzheimers.org.uk

    take your time, nothing needs to be done in a rush .. let your parents know you are there for them and let them help you too
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,901
    Male
    Bristol
    Welcome to Dementia Talking Point @LittleMe. There's not a lot to add to what canary and Shedrech have already written, it is a hard thing to sort out when you realise what is happening, but you will find support and advice here as you read other threads.
    Your local carers support centre and memory cafes are also a great source of support on a more personal basis if you need or want it.
     
  5. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    I went through what you were going through only a month or so ago. The first few days were just a mess, trying to figure everything else. And the best thing I did was nothing those first days whilst everything set in. After weeks of thinking well it could be this or that, trying to convince myself it wasn’t dementia but knowing deep down that it was. It was just a mess of thoughts. So I’d say take your time, let things settle, and all the advice for forms and things you have to do are on here, in a weeks time make a list. Also enjoy the good days. We are still having plenty of times where you honestly wouldn’t know that my dad has Alzheimer’s.
    Keep coming on here and you will start to feel better and seeing things more clearly
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,993
    Nottinghamshire
    Welcome from me too @LittleMe

    When my dad was first diagnosed we carried on as normal. For the first year or so most people wouldn't have known anything was wrong with dad so take it day by day.

    The best thing I did was to find this forum. There's always someone who understands and I felt much less alone with help from the people here...so keep posting!
     
  7. ANITRAM

    ANITRAM Registered User

    Feb 2, 2019
    28
    I agree with what others have said but would like to add that although you don’t think so at the moment it is good that you have received a diagnosis. Many people ( myself included ) know that there is something wrong with their loved one but cannot access a diagnosis because the PWD( person with dementia ) does not recognise there is anything wrong . Take your time to accept the diagnosis and take each stage as it comes . Remember to enjoy the good times .
     
  8. Philbo

    Philbo Registered User

    Feb 28, 2017
    680
    Male
    Kent
    Hi @LittleMe

    So sorry that you are in this position but as others have said, this forum will help and support you as much as we can.

    There are only a couple of things I can add to the advice about dealing with anticipatory grief and sorting out LPA's, will etc.

    Start by hoovering up anything and everything you can find (and TP is a great source of info) about caring for someone with dementia (including as suggested, what help/support is available in your location).

    Then take time to think about how to help yourself prepare for the journey ahead. My wife (PWD) is only 68 (our journey has so fare lasted 5+ years), so our son's are still only 43 and 46. We all tend to develop our own respective coping strategies, which in time, is what you and your mum (and of course to some extent, your dad) will do too. I have surprised myself on many occasions where I have managed to climb out of fits of despair, as each "stage" materialises.

    I wish you all the best and you've already done so well in these early frightening days. Keep posting so we can help wherever possible.

    Phil
     
  9. LittleMe

    LittleMe New member

    Jul 5, 2019
    2
    Thank you so much everyone. I wasn't sure what to expect by way of replies, if any, so this support is enough to reduce me to tears - which really isn't hard today, I guess.
    My dad is 82, so I feel like we should feel lucky he's this age wuth this news. To be relatively young and dealing with this diagnosis must be unbearably hard.
    I was a complete mess all day yesterday so didn't go to visit them. Dad was utterly destroyed. Didn't see it coming at all and just the word Altzheimers - because of experience with the parents of family friends over the years - is too overwhelming for him. For us too. And I thought seeing me uncontrollably cry wouldn't help him.
    Mum said he woke up this morning very low and tearful but doesn't seem to be totally clear about why, other than knowing that he doesn't want to see that Dr again. He clearly has a sense of terrible upset and unkindness about the appointment - although she was actually very kind. Today is a bad day - this lack of clear memory - which I'm glad for. I'm happy he doesn't remember it, he was distraught yesterday. And him being hurt and upset is something that just kills me.
    For now, mum and I have decided not to use the A word with him or between ourselves. For some reason, the word dementia doesn't seem to frighten him nearly as much, so this is our only word for it and as far as we'll go with him for now. We also aren't telling anyone yet. We all need time to process it and it's enough to just continue to say his memory is terrible - which is something people have come to understand over the last few months.
    Mum had already started LPA, knowing his memory was so bad. So she's on that case, and they have wills.
    I feel odd saying this, but almost wish I had something to pray to. To cling on to and look to for support. But I don't have a faith. I keep looking forward and thinking about what this means for him and us, and ultimately for me, alone. How do you stop yourself looking forward to the worst?
    I'm just so sad for him. For my mum. For our family of three. And for me too. So many different kinds of sadness and fear.
    I love him so much.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    Your dads reaction is actually very common. He cant remember what happened, but remembers being very upset and knows that it is something to do with the doctor, so he has misremembered (called confabulation) that she was horrible to him.

    Not using the A word is a good idea. I never used this word, or the D word to mum - I just used to talk about her "memory problem". Mum forgot very quickly that she had been diagnosed with Alzheimers and was sure that her poor memory was just due to old age. I never corrected her.

    You and your mum will need support as the Alzheimers progresses, so I would start telling a few close friends and relatives that he has Alzheimers - they will probably guess pretty soon anyway and then it becomes the elephant in the room.

    Dont try looking too far ahead, its impossible to predict exactly how or when it will develop. Just deal with the way it is now and you will find that you will be able to cope as things change. And you can always ask us questions and for advice :cool:
     
  11. lis66

    lis66 Registered User

    Aug 7, 2015
    259
    Sending hugs to you Littleme ,I have been on this long heartbreaking journey for six years with my mum,and like you am an only child,I won't lie it's the most cruelest disease,it really is a living grief TP has been a lifeline for me ,I have also had councilling ,please keep posting on here you will receive lots of support xx
     
  12. Witzend726

    Witzend726 New member

    Jul 7, 2019
    2
    Hi lis66 I am in a similar position with my mum, she has only recently been diagnosed but I felt that something was wrong with her memory for a while. I really understand how hard this is for you, but we just have to keep going and try to think of the good times. I'm new to this community but TP is a great source of comfort. Woke up this morning with a worrying list of things to do for mum and wondered what you meant by councilling and if it helps to control the feelings of being overwhelmed. Hugs xx
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    I know how gut wrenching your situation is
    My dad diagnosed 2016 & Vascular Dementia & Alzheimer’s
    You have to allow yourself to grieve & focus on your dear dad.
    It’s easy to lose yourself in this disease as a child - wanting the best for outlived ones & seeking that .
    You have a diagnosis
    Your Mum I hope is well & will accept help as it’s required.
    Take all the help offered & some
    What your loved one liked / likes will change & it’s hard at times ....
    But.......
    enjoy every glimmer of the Dad you love & I can promise you even on bad days you will see a little glimpse of him - those glimpses you will treasure.

    This forum is amazing
    Advice Help Knowledge
    No one travels this path alone
    Much love to you all
    Xxx
     
  14. lis66

    lis66 Registered User

    Aug 7, 2015
    259
    Hi Witzend726 I received free councilling through my work,and then just lately through my GP, it definitely helps me to talk to someone,but to be honest it doesn't take the pain and heartbreak of living with this illness away. So sorry about your mum get all the help and support that is available to you,you will find lots of information available here on TP it has been a life line for me,as another member said to me dementia takes all you have got and more,and it's so true ,sending hugs straight back to you , please try and enjoy the time you have with your mum,my mum has had ad and vascular dementia for six years,the first three years after her diagnosis was good just short term memory loss ,but the last three not so good as it has progressed please take care and keep in touch xxx
     
  15. smuffy98

    smuffy98 New member

    Aug 30, 2019
    1
    Hi all

    @LittleMe I hope you don't mind me posting on your post but it really resonated with me.

    I have just joined today and seeing that there are other people in the same boat as me is helpful.
    My Dad was diagnosed about a month ago, however we have known for about five years something wasn't right, he just wasn't himself and was forgetful but we just thought it was his age. We were dealing with looking after my Nan at the time so, as it wasn't impacting anything too much, concentrated our effort into her. She passed away last November, at which point my Dad's forgetfulness was getting worse so we went to get him tested and it came back with mild cognitive impairment, which at the time was a relief on one hand, but not so much on the other as we felt there was more to it. From that point our whole lives then seemed caught up in 'what's wrong with Dad' conversations, observations,fears etc... until we got him back to the clinic. The memory test was awful to watch, him thinking it was 1972 was a huge blow as we hadn't realised quite how bad he was and how much he had been desperately trying to not show it, hence the quietness on his part up to that point, which isn't like him at all, or wasn't. He got his diagnosis and it was a relief to have a name for what was happening! I think I blocked the actual meaning of it out..... Until now. I saw my parents last night and it just hit me that things are not going to get better. My Mum has rheumatoid arthritis and we always assumed Dad would be her carer but now they will both need care. I have a sister and luckily she my best friend so we travel this path together, but it's a path we never saw coming and wish we didn't have to travel. Mum isn't coping at all with the diagnosis and part of the reason it took so long to get Dad to the Doctors originally was denial on both of their parts but my Mum in particular. She used to be a teacher and has been treating my Dad like a child for a long time now, much to his frustration, but it's got worse since we now know what is wrong. It's like she's written him off already and that's really hard to deal with.

    Sorry for the rant! What a way to introduce yourself, I hope you understand I'm just a jumble of thoughts, feelings and sadness at the moment. I feel like joining this group is my first step to acceptance of the hand we have been dealt.
     
  16. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,485
    Female
    England
    Hi @smuffy98 and welcome to Dementia Talking Point.

    It’s not an easy diagnosis to accept, it’s frightening and the future suddenly an unknown. It’s so good you have your sister for support as you try to deal with both your Mum and Dad.

    I can understand your Dad not appreciating being spoken to like a child but sometimes it is easier to make questions easier to understand. I found with my husband giving him choices confused him sometimes so I would never ask him if he wanted tea or coffee, I would only offer him tea, swapping them around during the day. The same with meals, it would be ‘ we are having pork chops for dinner today’. Not quite talking to him like a child but making life easier for him and me. Perhaps you could have a word with your Mum about making things simple but not childish.

    Please don’t think you are ranting, we all know there are times when we have to get it out so we are all happy to listen and hopefully you will feel better.

    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

    You might find the above useful, not easy to do but following it, even a little, will help both you and your Dad.

    Please keep posting and getting advice and support.
     
  17. Max68

    Max68 Registered User

    Aug 21, 2018
    74
    Male
    Sussex
    Little Me. If it's any consolation you have come to the right place for help, advice and support. With my mum (83) and her rollercoaster vascular dementia situation (I hate the word journey!) the likes of Canary and Co have been a great source of help, kind words and the occasional say it as it is post. What I will say though is as time moves on the one thing you "must" do is make time for yourself. In my case it's a round of golf but whether it's cinema, a night with friends, television, music, whatever takes you away from it from time to time is a must to recharge the batteries and just get away from it for a bit otherwise it can all get on top of you. So look after your dad and mum, that goes without saying but don't neglect yourself.
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,062
    @LittleMe how are you & have you managed to access help at all?
     

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