Father diagnosed yesterday at 58.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Sophie06, Apr 26, 2006.

  1. Sophie06

    Sophie06 Registered User

    Apr 26, 2006
    9
    #1 Sophie06, Apr 26, 2006
    Last edited: Apr 26, 2006
    My father is 58 years and has just been diagnosed with Alzheimer's. He has been changing in personality over the last 3-4 years and it has got increasingly worse over that time. I am in my early twentys and still live at home with my mother. I wondered if there is any one else in similar circumstances as myself as it is rare to develop this so young.

    Any comment and advice would be greatly appreciated because although the recent results did not come as a shock I do not know to much about Alzheimer's yet. He is due to go back to the Neurological hospital in London again for more tests.
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Sophie, and welcome

    I'm sorry your Dad is afflicted with AD, and at 58 that would be defined as early-onset. There are several 'regulars' here who care for loved ones who are under 65. Most cases of AD are as individual as the patients themselves, the timescale of the disease can be slow or rapid, or develop in steps & stops. Having said thet, there are also a lot of common traits, habits and syptoms which do occur frequently. I'm sure if you read through some of the threads, they will help you understand a little more about AD, and perhaps pick up some ideas & tips for dealing with symptoms which may arise.

    It must be a double-edged sword still to be living at home with Mum & Dad. On the one hand, of course you want to 'be there' for them, literally & metaphorically, and I'm sure your Mum appreciates the moral support of your physical presence. On the other hand, it's painful to watch anyone you love when they are in distress.

    You haven't told us how Dad is affected (physically), but if he is still mobile and wants to do things, my advice would be to do things & go places you want to go NOW, whilst he is still capable of enjoying them. In time to come, he may feel less comfortable about going away from home.

    Do feel free to use Talking Point as a release valve if things get frustrating and painful. Sometimes it's easier to open up to people you don't know than to other family members.

    Best wishes
     
  3. Sophie06

    Sophie06 Registered User

    Apr 26, 2006
    9
    Hi Lynne,

    Thank you very much for your reply. My father has had a very stressful life after winning his fight against cancer in his early twentys and going on to having a very responsable and high earning job.

    The main thing im finding that is happening at the moment is that he goes for walks. He takes many walks to the paper shop often picking up more than one of the same newpaper on the same day. He doesnt really have any sense of time and get fustratrated when he goes to bed at 7.30 and my mum doesnt follow. He finds it hard to get his words out and gets mixed up. I try not to complete his sentances for him but it often turns out that way as he looks at me for help. He has mentioned to me only about ending his life before but im not sure whether he has spoken about this to my mum or sister.

    I do worry alot as he is very unoredicatble at the moment. As he is so young my mother can not afford to give up work to care for him. I dont feel he needs care at the moment but he has deteriated quite rapidly and we need to think ahead.

    People are advising me to get on with my life as I can not live my life looking after him and make choices around that but I cant see any other option.
     
  4. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Take a deep breath

    Sophie, welcome to TP and I hope you'll find it helpful and supportive - I'm never have made it through the last year without it: there are some truly wonderful people here.

    First of all, you must be at least partly in shock at the formal diagnosis, which will make everything feel harder for a while. The shock will start to wear off. That's not to say life will be funfairs and roses, but getting through the shock does help. Now that you have a diagnosis, has anything been said about assessment of your Dad's needs - CPN contact to monitor his progress, Social Services? Despite their image, these people can be very helpful as things progress, and it may help to get them involved sooner rather than later (they work in worlds where things can take a long time, so giving them plenty of 'notice' by involving them early may not be such a bad idea, even if your Dad's needs aren't that great at present).

    From my experience, and from reading TP, depression and mood swings often accompany this disease. My own Mum has spoken quite often about 'ending it all', but it really appears to be just venting on her part - neither the hospital or the care home staff have noticed any actual intention to self-harm. It's almost certainly largely an expression of frustration, although it's difficult to listen to and not be shocked, upset and alarmed.

    The other symptoms you mention are common - my Mum started to lose all sense of time at first (going for the morning paper at 7pm, walking the dog at midnight and wondering why no-one else was around - it obviously didn't dawn on her to wonder why it it was so dark). If you read through the factsheets on the main part of the website, you'll get more idea of other common symptoms - knowing that they are common can help you to accept them and deal with them.

    What advice and help are you and your Mum getting from the professionals involved - if you can talk to them separately from your Dad, they may be able to offer a lot more advice and guidance. It's also worth asking if they are considering any medication or treatment to deal with his symptoms, and discussing this with them.

    Good luck, and please keep posting. The better we understand your individual situation, the more we can try to help.
     
  5. Sophie06

    Sophie06 Registered User

    Apr 26, 2006
    9
    I feel that it is very hard already. I am very independant and do not spend that much time socialising with my family at home. I have read some of the other threads and it does scare me of what I have to come. At the moment I feel that I just want to go sit in the middle of a field or somewhere else secluded and cry. I see this as weak as I have to keep myself strong. My mother and sister never also discuss emotion and put on a brave front. I often believe they are not hurting as badly as me due to this. I still to this day have no idea if they cry or feel sad.

    I am not one to let the tears out and always hold them back where possible. I found yesterday when I was given the news that i did not cry but so badly wanted to. I found myself having an outburst in my car on the way home by accident. It was almost like a sneeze!

    I have read reports where it says that I am mourning. Is this correct?
     
  6. lou lou

    lou lou Registered User

    Nov 9, 2005
    46
    London
    Dear Sophie,

    If YOU think you are mourning then you are. I've often heard Alzheimers called "The Long Goodbye". With your dad diagnosed so young it could be a very long goodbye particularly if he is physically fit and well.

    I guess it is a big shock from which it will take time to recover. Like any hurt or injury we all react in different ways. Go find that field and have a good cry.

    It's hard to break established patterns of communicating in families but it would be good if your family could be more open and expressive maybe this is a good opportunity to change. AD will tax the most robust of families and the pain of witnessing the gradual decline of someone you have loved in their prime is sometimes unbearable. Just be kind to one another.:)

    Will be thinking of you

    Lind regards

    Lou Lou
     
  7. Sophie06

    Sophie06 Registered User

    Apr 26, 2006
    9
    Thank you for your comments. I find them all most helpful and comforting. As I tell people that are close to me I lost parts of my dad along time ago. He has changed so much. I miss him although he is still with us. Gone are the days of a bright, happy, intelligent and strong man. I guess I have come to terms with this without really noticing.

    Thank you all for your kind, warm and informative comments.

    Sophie
     
  8. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Dad

    Hi Sophie,

    My husband is 55 and he has AD too. He was diagnosed last August and I think back now and realize that it was probably starting about 4 years ago. He was a very strong man, a very good job as a kitchen ftter and could do any job you asked him to but now he can't. If he goes to the shop for 2 ham salad rolls, I have to give him a note and the girls in the shop take the money from all the lose change in his hand.

    Has your Dad been given medication? My husband started on Exelon a few months ago and he is slowly getting worse but thank God he isn't aggressive and he doesn't wander off. He looks at his watch many times a day and that takes a while cos he is trying to work out what time it is, sometimes he asks me. He cried twice when he was first diagnosed and begged me not to put him in a home. I just told him then that there was absolutely no need to go into a home, he was fine, just got memory problems.

    He has 2 daughters, one 29 and the other 31 and they live about 70 miles away from us, lovely girls but they dont ring him, occasionally they ring me for a chat and ask how he is, say give Dad my love and that's it. It's a shame your family don't talk about this, can you try and get them to chat about it, when Dad isn't there?

    I wish you well anyway, it is a wicked, cruel disease and for young people it does rob them of many happy years of retirement and the time to enjoy their lives. Carers too.

    Love Twink
     
  9. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    I don't know if this helps

    ... buI was never one for crying either. The last year I've cried more than my whole life put together so far. I've made myself realise it's perfectly ok: if I didn't, I'd be less than human, and that's not something I'd want to be. If you want to cry, just cry. (TP makes a great virtual shoulder too, by the way.)

    And try to keep the rest of your life going as well - it really does help to have other things in your life apart from something sad. You may not sometimes feel like having a night out, but a half-hearted night out beats a miserable one at home.

    Take good care, and keep posting - it's always good to hear from everyone here.
     
  10. sophia

    sophia Registered User

    Apr 20, 2006
    21
    good grief!

    Hi Sophie6

    My mum was diagnosed a year ago and she is 70 now. You asked if you are mourning and described that incident of sudden crying in the car so well when you said it was like sneezing! I know I am feeling grief symptoms and for me I was shocked at first and a bit disbelieving that it was happening even, but since that I've started to properly believe it. I think we are protected by what we can take in at any one time. I've had days in a row when I don't cry and days in a row when I do, and I just accept it. I feel I have had more time to accept what is happening, but things change , Mum's condition changes and I notice new things she can't do and grieve again. I think it will be like that for a while for me. But I'm feeling I 'm coping with it better as time goes on. but it's hard work ! Just dealing with my emotions is tiring in itself. There are some days I know I can't be much help to Mum because I'm dealing with what I feel like so I try and make a short visit that day if I can. If I go at all. I have had to give myself 'permission' to do that. Guilt has been getting in the way!

    My family has never shown emotion, hugged, kissed, cried together. we have always laughed a lot. Things are changing though. My mum is more receptive to hugs and outward demos of affection now, it's a slow change, but it's happening. And my brother and I are getting closer, have cried together and hugged each other . We were both so shocked in the early days that it actually came naturally. So, you never know!

    As others have said, welcome, and use the experience of others here. I'm very new and already this is site is really helping me. xxx
     
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    This is going to be long!!

    Oh Sophie, Sophie, Sophie! Your situation with your Dad so reminds me of mine...except I've been doing this for 6yrs now and Dad is 62 this year. I was a bit older than you when it all started though, at 25.
    So yes there are others in similar circumstances, or who have experienced a lot of what you're going through like me, but yes your situation is rare, there are not many people on here your age (even I am old in comparison at 31...and I am so used to feeling like a spring chicken on here!:p ). Nonetheless, there are quite a lot of husbands and wives of younger people (i.e. your Dad's age) on here and they help a lot...they can also help you to understand it all from your mum's perspective too. One thing you must remember though is that everyone's situation is different and that because of this sometimes people just won't 'get' why you are feeling a certain emotion, unless you explain it...and sometimes you just won't be able to explain it.
    It really is good advice and if you can do it I would yell at you to do it!! But as a daughter who loves her Dad, how can you just walk away? It can be done, some can do it, but some of us can't. As my husband says to me when I say 'What if, I just stopped visiting Dad?', his reply is 'For you dear, that solution would be just as painful as visiting him every day.' (Dad's in a home these days). My sister has distanced herself quite a bit from it all, and my brother only has contact with dad once or twice a year...and I don't think badly of them for it, but I can't do it. I think about it everyday...but I can't do it. I think about how much my Dad loved me, all that he did for me, and then I think about how I would feel if I was in his shoes. I know at times he would prefer me to not be there for him because he worries about me, but I also see the way his eyes light up when he sees me and I can't take that away from him. Last but not least, no matter how terrible the situation, I love being with my Dad. Sophie if you make this choice...if it really is a choice....this is going to be the hardest years of your life and you are in the years where you should be having fun. My lot for my choice is a life devoid of normal social activities for people my age, because even though I can go out, I just feel so distanced from other people my age I don't really enjoy it...lucky for me I met my husband 6 yrs ago, just before things got bad, but I often shudder to think how alone I would have been if I hadn't met him...I may very well have ended up a basket case myself! As it is for the past 3 months I have been in agony with head/tooth/face ache due to tension causing me to clench my jaw in my sleep. So I guess what I am saying is that if there is any choice in this for you, run away now, and don't feel bad for it, it is a huge sacrifice.
    You cause a grim smile from me with this comment, smile because you say it so matter of factly, already you are getting tough, grim because I know that no matter how matter of factly I dealt with the same situation the little girl inside me was screaming 'No Daddy no!' when Dad was considering a similar way out early on in his disease. Today his alternative still haunts me, not only because it is horrible to see your once so capable parent so desperate to escape their current situation but also because I often wonder now with hindsight if perhaps it may have been the best thing to do afterall. I often think that if I get this disease I will have to think long and hard about that alternative. The thing is though I am looking now with hindsight, but I remember the person I was, when Dad was at that stage and for him to have done that well I think it would have been just as devestating to me emotionally as my current situation is...it just seems like it would have been easier now, because now I have had years to get tougher. At the time though when Dad was at his lowest, it was around his birthday and so I wrote in his birthday card that he had so much to be proud of, that he had made me the person I was, that he didn't need to talk, didn't need to be able to do anything anymore, that just his being there gave me the strength to be the woman he wanted me to grow up to be. I had to read it to him though because he couldn't read it anymore...it was a very unsubtle plea for him not to leave me, and it seemed to work because he never talked that way again...but sometimes that makes me feel bad too because sometimes I wonder if he suffering through all this for my sake and I just made life so hard for him when he could have taken the 'easy way out'. <bawling my eyes out just now>

    For some people crying is bad, I have been admonished on here by some because I suggested crying was good, because apparently for some, once they cry they fall apart...HOWEVER, for me I think crying is the key to getting stronger, and perhaps part of the secret to that is that most of the time i don't cry at the important moments (like getting a diagnosis) but do my crying like you said, like a sneeze. I just bawled my eyes out writing what I wrote above, even though I have lived with that situation for years, I have bawled my eyes out for almost an hour once after watching a movie about a dad who dies, and then walked outside hung the clothes out to dry and continued to bawl the whole time! Then there was the time i was driving home from Uni, feeling great because I just finished my last exam and I just started bawling. (Dave can tell you about his azalea incident too ;) )These days I am proud of my crying (I generally don't do it around other people however) I know that it is a release and that it allows me to carry on stronger and more resolute afterwards. So I think if you have some control over your crying, i.e. don't let it happen when you need to be functioning, you really should take advantage of its healing properties. Something my crying also does it makes me aware of how terrible things are....you tend to spend your days telling yourself to get over it, what's your problem, you're so weak...but when my 'sneeze' crying happens the amount I cry awes me into realising that 'shite things really must be bad, how about you give yourself a break Nat'. Those reports are right, you and I are in mourning and I have been in mourning for 6 yrs now, I was just thinking last night that I hope to God that when Dad does eventually die that I will not spend an equal amount of time in mourning after it all...I'm hoping that by not denying my emotions now, life after will be easier to get through than for others who have not cried yet, mourned yet.
    My mother and sister are very similar...I still to this day am not sure if it is a brave front or if perhaps they just don't hurt as badly as me. I know my mum and sister seem to hold onto all the things they didn't like about Dad...so maybe they just didn't love him as much...and then I go back to thinking that perhaps they are just in denial.:confused: I know I spent a lot of the first years of Dad's illness thinking I was pathetic, over-emotional, making mountains out of molehills and so on....because everyone around me seemed so unconcerned, my sister and mother would swing between telling me that I hadn't come to terms with dad's illness and telling me to get over it when I was in tears, and society in general doesn't give you any excuses so in the main, friends and employers just want you to get over it too...the problem is, you can't get over something that just goes on and on, and gets worse and worse...you just have to learn to roll with the punches instead as best you can. And most of the time you have to do this by yourself because no other ****** wants to take the time to understand, and then you yourself don't want to be an object of pity so don't want to ask for understanding. Don't ever beat yourself up for feeling like you are 'not coping' you have every right to feel that way.
    Sophie, from one who is experienced I know how you feel when you say this, but I also have to say soak it up right now, there is so much of your old dad still left in him...its just your shock at the loss of so much that is blinding you to what remains. Celebrate every day you have with this man now. Its hard to explain and I don't want to scare, but I never realised how good Dad was back when he was at your Dad's stage because I had no concept of how bad things eventually get (I worry now even that there is still so much more of him to lose). In no way however am I belittling what you are feeling, its like your Dad dies every day as another bit of him goes, and that pain is horrible. As I said to my mum recently part of the reason this disease is so painful is that every day the person you love dies, you wake up the next day and there is a new version of the person, you grow to love this new person and then they die too, it a continual cycle of attachment, love, loss and grief. But please please do delight in this wonderful man that is with you today, if you can't see it for yourself, please do it for me, give him a hug, a squeeze, a wink, tell him how much you love him, enjoy this moment with him now.

    Last but not least, there are a lot more medications out there these days that weren't available to my Dad that can hold the disease at bay for longer and give you more time. Make sure when your Dad goes back to the neurologist someone finds out about what medications might be suitable for him. Aricept is the most well known. Call me crazy, but I still hold onto the hope that a cure will be found, even if not for Dad, if someone like your Dad was the first to be cured I would be soo happy that this misery is ended.
     
  12. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Sophie

    Don't bother with the middle of a field, it is jam packed with the rest of us with tears rolling down our cheeks. It is very tempting to want to isolate ourselves and wallow in our misery, be careful that way lies depression as I know to my cost and I am invincible!! TP is a great way to avoid that problem, what you are going through is shared by others and it can be a great help to share our thoughts with those who have been there.

    Hugs

    Dick
     

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