how angry can i really feel???

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tinylou, Jun 5, 2006.

  1. Tinylou

    Tinylou Registered User

    Hi, I have just found out that my dear old dad, of 80 years, has Alzheimers. He also has Prostate cancer, and has been battling with that for the last 12 years. Im so angry at the moment. we knew things were not good with dad, as all the little problems, were just kind of getting more regular, things went under the grill, and not in the oven, freezer stuff kept in the fridge, not recalling names, dates and such.
    Dad lives alone, in a warden controlled(only in the day) place.Now, im worried that we may need to get him better cared for as this problem worsens... i really am in shock to finally know that he has this illness,and it has a name... its not that he is just a bit 'batty'.. am i allowed to call it an illness!?
    I feel so angry. with me... with him.. with everyone!
    am i normal, hey, what is normal!

    im the baby of 5 kids, (even tho iam 41) and my sister is away on holiday... do i tell her, or should i wait til she gets home.. waiting seems kinder?? will she see it that way..

    god, i feel so empty, and ive not yet spoken to dad about it...... he just seems to smile and say super, smashing!!
    please tell me that im 'normal?'
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Jun 5, 2006
    Last edited: Jun 5, 2006
    Tinylou

    You our a normal loving kind person & daughter who is feel all the normal things

    I also would wait till your sister gets home .

    Yes it is an illness & you can call it what every make you feel good , you may be 41 ,but we all still have that child within us , Who needs comfort & love

    Wishing you all the best ((Hugs)))
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Tinylou,
    Yep, you are as normal as the rest of us round here - so that's not saying much!
    Alzheimers Disease - definitely an illness. Nothing to feel ashamed of (a relative who has gone batty, round the twist, bonkers, doo-lally- what other terms are used to describe our loved ones who have dementia?) I remember when I first spoke to the doctor about my mum, I said something like "she's losing her marbles" - I had to joke about it, cos I couldn't face the fact that she had dementia.
    Your dad has an illness that may or may not eventually kill him, but he's not going to change over night. You still have time to enjoy with him - yes, you have some difficult times ahead, but there's still time for fun. And my view is that you beat this disease by keeping things as normal as possible, for as long as possible; by loving your dad as he is, and being proud of who he is.
    I know many people just speak of a memory problem, rather than putting a name to it - you know your dad, you and your siblings will know what is best for him.
    So Tinylou, you have a tough journey ahead of you with your dad - but it will have highs as well as lows. If you feel angry, come on here and rant and rave, we all do it from time to time. You feel empty because you are shocked, scared for the future, and you have already begun to grieve - it is normal.
    Find out what you can about Alzheimers, it helps you to be prepared. Ask questions on here; I have learned more from here than I have from books.
    Take care; looking forward to getting to know you.
    Helen
     
  4. Tinylou

    Tinylou Registered User

    thanks...

    wise words from people who know... im scared to read too much info, dont want to pre empt too much. My hubby is away, as he is in the navy, my son is away at school too, and i dont have any family around me here, and in august we are moving further away from dad... not planned, but the navy say go, and we go!
    The thing is im just scared and i dont know how to tell people why im so bitter inside.. guess am just feeling selfish, and what about me? i dont want to loose MY da.. hes MY dad, and i dont want to think that far ahead!!
    thank god for these pages, or i may have gone stir crazy myself this evening..
     
  5. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi TinyLou.
    Just want to say hi and tell you that we all feel out of the norm because we dont want AD to be normal !! There will always be someone in TP that knows what your feeling and going through. Just take it one day at a time and try not to think too far ahead. Those days come soon enough so why go there until you have to. Just treasure each day and be glad for what positives it holds.
    Take care,
    Debbie
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
  7. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Norman thanks for posting that list... Just went back and visited some of the fact sheets and they really are helpful and well written - Just helps to 'remember' what the facts really are..
    Michael
     
  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #8 Lynne, Jun 6, 2006
    Last edited: Jun 6, 2006
    Hello, Baby of 5 kids ...

    Welcome, and I think you are not 'normal' at all - you didn't use a single swear word!! :cool:

    Seriously, you are feeling what we all feel when faced with the reality of Alzheimer's Disease (yes, definitely a recognised illness) and probably several other emotions you may not have recognised yet - the shock and anger tend to come out first. Also, your anxiety must be increased by the fact that you have to move further away from him shortly.

    So, Baby of 5, would I be right in thinking that you have 1 sister and 3 brothers? Whoever lives nearest to Dad is likely to draw the short straw as regards close involvement with his future care & welfare. (And don't jump on me for negative implications of "short straw", we all know it's a mixed blessing) It doesn't have to be your sister! The more everyone can get involved at an early stage, the better for all concerned. Those who live further away can still help; agree to phone Dad on a regular day, drop him a line (or get grandkids to do so now & again) holiday postcards - keep in touch. It doesn't have to be lengthy or demanding; talk about everyday family stuff - kids activities, gardening, pets ... but keep in touch.

    I agree with Margarita about waiting until your sister has got home from her holiday before you tell her. Your Dad is unlikely to change hugely in 2 weeks. Then I think the 5 of you need to have a kids family conference (face to face, telephone, email, whatever) so that you can tell the others what you know, and may find out from the UK*** Alzheimer's Society factsheets. (UK*** I spent a lot of time by mistake on the US Alz. Soc. site, until I realised that some of their advice isn't relevant here, since their services differ from ours!)

    I don't share your view about "finding out too much". Knowledge is power, and at 41 you're all growed up and big enough to be analytical about it. Military principle - 'know your enemy'. You may read about 100 different possible signs & symptoms & behaviours, but only actually observe 10 with your Dad. It's like those information sheets you get with most pills & medicines these days; they try to cover all eventualities, but that doesn't mean you'll get all those side effects!

    When I said "tell the others what you know", you are not supposed to be the family expert on the future. You can only take that day by day, at Dad's pace, and you can't predict exactly what will happen. Deal with what's happening now, pass on what the doctor(s) may have told you, whether he has been prescribed any meds. Just share the information, the (emotional) caring, and your feelings about it. Face the fact that he may need to go into residential care, but that time is probably not here yet. With some assistance from outside organisations, he may be able to stay in his own home safely & happily for some time yet. Contact the local Community Nurse, Social Services, local branch of the Alzheimer's Society to find out what help is available (the latter may be easiest to start with; there is a list of local branches on the fact sheets, icon at top left hand corner of the screen).

    Channel your anger into finding out about things; many families have been down this road before you and, sadly, others will come after you. There isn't a cure, but there are meds. which will help reduce the deterioration of his memory for a time, and help reduce his anxiety (if that happens), and non-family carers who will (for instance) go in and make sure he's had some breakfast & taken his pills.

    My Mum's 87 and sounds as if she's at much the same stage as your Dad. I'm only just getting to grips with the fact that she can't remember things, she can't learn anything new. The connections in the brain necessary to do those things have gone. She can still remember funny things from family holidays when I was a kid 40-50 years ago, but yesterday-memories are largely an impossibility for her. It's very wearing, still, to answer the same questions 30 times a day (usually "what day is it?" :mad: ) but getting irritated just stresses us both out, with no benefit to either of us. It's not easy, I'm not a patient person; I still snap at her without thinking, and then feel awful. But she doesn't want to be like this, she's not doing it deliberately. She and I are victims together, just as you & your Dad are.

    It's a tough call, but you'll rise to it. Don't expect to turn into a saint, you absolutely won't! Expect to feel guilty all the time, it comes with the territory. When you love someone you expect to be able to solve problems for them, sort out difficult situations. This is one which, ultimately, you will lose. But he's 80 years old; he, like my Mum, is going to die of something, no-one lasts forever.

    This Talking Point forum, to my mind, is out-&-out the best source of real life help & information from people who know. (Not meaning me, I'm just a newbie at this) Contributors here are the 24-hour sons & daughters, wives & husbands of dementia sufferers. It's a different point of view from other "professional" carers, who see the patient for an hour or two, however good they are. Talking Point is my mental lifeline.

    Best wishes Lou, see you soon.
     
  9. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    #9 Lucille, Jun 6, 2006
    Last edited: Jun 6, 2006
    Phew! What can I add that Lynne and the others haven't already said. I couldn't even say the word 'Alzheimer's' without getting upset, when mum was first diagnosed. And even now, I find it difficult, but what's made the whole thing 'easier' to cope with (if 'easy' is the right word), is finding out information about the disease. I've read lots of things about it, joined TP and browsed through the posts. I even went to a lecture held by an eminent professor in elderly care. Not something I'd normally do when I have a chance of watching repeats of Top Gear! Do as much as you can, Tinylou, don't try and do it all yourself.

    Laugh, cry, scream, rant. We all do it. It's the only way we get through. :D

    Post back soon and let us know how things are.
     
  10. Tinylou

    Tinylou Registered User

    wow!

    blimey... thanks for all the advice, im overwhelmed. (Im the baby of 4 sisters and 1 brother, Lynne, but you were close. )
    I spoke to dad last pm, and asked how the hosp visit went,as it was the brain scan results..all that dad said was 'super smashing, nothing to worry about' and this was when he was told about the alzheimers.
    My sister said he didnt really understand when at the hosp, and was being told anout the results... all he did was to sit there smiling, and raising his eyebrows....
    I didnt question dads response, but it really brought home to me... he doesnt remember!

    Dad also has advanced prostate cancer, and its in his spine now.... my sister came out with the same thing as I was thinking, when i spoke with her.. 'lets hope the cancer gets him first' but when SHE said it... god, that was like 900 volts thru me... how can i/we wish that on this fantastic man?

    Dad is still living alone, and my sister lives 10 minutes away from him, she has that short straw! i live an hour and a half away.... we are all scattered around the uk..

    I cant visit dad... this scares me.. hes my dad, and so why dont i want to go and see him.. i love him with all of my being, i idolise my dad... so why should i feel like this??
    im really missing my Mum today.. she died 12 years ago.

    What would i do without this forum.x
     
  11. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Tinylou,
    Can't face him? You may cry in front of him? May bring home to you what you are losing? Come on Tinylou, cancer, dementia, your dad is a poorly man, but he is not dead yet - get the first visit over with, face what you are scared of - go and give him a hug, and make the most of the time that you have. You can do it, and when you get home, we will be waiting to hear how your visit has gone. Tinylou, you are not on your own.
    Sorry that you are missing your mum so much today; no matter how old we are there are days when the only person that we want is our 'mum'.
    Take care. You will get through this.
    Love Helen
     
  12. DickG

    DickG Registered User

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

    Helens advice is tough but right. Who knows how much time you have left with your dad and if you do not make the most of it you may never forgive yourself.

    Nobody pretends that it is easy, our thoughts are with you.

    Hugs

    Dick
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #13 Margarita, Jun 8, 2006
    Last edited: Jun 8, 2006
    Tinylou


    What ever feeling /emotion your feeling your sacred of it , Those feeling / emotion can’t hurt you or harm you , only depress you if you keep it all in side of you so try to let it all out …… (It does come , go ) try not to let that fear come between you & your dad he need your inner courage now , sob all those tears, feeling ,out with what every member of your family that your close to .

    All the best tell us how your get on
     
  14. Áine

    Áine Registered User

    I'd go along with Helen and Dick. On the whole I've taken the approach that I'll be able to work my way through the pain of things I've done or seen better than the pain of not knowing what might have been and wondering how bad it would have been.

    I guess it's a different experience for those who live close and see things deteriorating day by day, and those who live at a distance and notice big changes between visits. Neither is a good position to be in.

    Maybe if you talk to your sister about your anxieties about seeing him she can help you with them ......... and in turn you'll then be more able to help her. It's hell but I'm afraid often it's life ........... go for it!

    best wishes

    Áine
     
  15. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    Hi
    just wanted to say hi
    have been feeling very low and sorry for myself without my dad but have been "visiting" TP and reading other posts

    my dad is still in hospital being assesed (for nine months!!!) and I am running out of energy trying to find a home in the councils budget that is well run and able to meet dads needs - three have turned him down or requested higher funding for one to one care - one agreed to offer a place but was awful and i think they just wanted to fill a bed
    my dad has been presented to the continuing care panel but was unsuccessful social services are going to represent him ( although the date goes further and further away) in the hope the nhs will fund him - i have found a home who specialises in challenging behaviour but of course it is out of budget
    this is how i always felt about my dad as I have never been close to my mum -
    i was always a daddys girl and miss his company, advice , smile and all the jokes we shared together - there is no one who i had this easy rapport with so much i have to stop myself thinking about him and try not to remember or think of happier times in case the grief swallows me
    i know i am luckier than a lot of other tp but the struggle to see my dad in a more comfortable surroundings and easier for me to see him - at the moment it is only once a week - when i explained to his consultant that visiting my dad 45-60 minutes away was very stressful as i am a single mum and work - her advice was to visit less often!!!:mad:

    sorry this is such a gloomy post - feeling very gloomy

    love Karenx
     
  16. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    #16 KaC, Jun 10, 2006
    Last edited: Jun 10, 2006
    I meant ot have started a new thread there!!! not post a reply!! i will try and move it to a new thread
    sorry
    karenx
     
  17. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    i think i have now posted it twice - good job i do not post often!!
    karenx
     
  18. Áine

    Áine Registered User

    don't worry about it ...... the mods will prolly be able to sort it :)

    hugs

    Áine
     
  19. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Karen,
    Don't worry where it is appearing, I'll talk to you here.
    I know just what you mean about not remembering - sometimes I don't think it is choosing not to, but not being able to remember.
    What a stupid consultant!! Maybe of the school, dementia, lock em up and throw away the key. It must be hard Karen, but keep looking for the right home and fighting for the funding - you are all your dad has to fight his corner.
    Feeling gloomy? Join us on "Bump on the Head" thread, we're having an impromptu party, wine, beer and vodka are flowing!!
    Love Helen
     
  20. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    sounds just what i need
    love karenx
     

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