1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Of course I could be wrong...afterall Dad can't really express himself...I think his yells mean anger and his laughter means happiness...but what do the involuntary jerks mean, what does it mean when he reaches up to my face and then scratches or hits me...is that really a kiss he gives my mother when she leans into him or is he opening his mouth involuntarily (it really does look like he is forming a pucker tho), when he says Babababa...is he referring to me, his baby...or is this just some random noise that comes from him, but seems to come more often around me...and when he is really trying to talk to me??

    But I am sure that was a look of love from him the other day. I am sure he was listening keenly interested in what I was telling him when I talked about a tv show I saw where a man with cerebral palsy after not being able to talk or control the majority of his movements most of his life, was finally able to communicate with the help of a computer and it turned out he was completely normal with regards to his thoughts.

    I ask Dad to let go of my hand and if I wait a minute he does...if I tell Dad that there is a step up in front of him, if I wait a minute, he lifts his foot higher. What about the time I told him that he had homework, that my brother was coming to visit and that he had to think of something to say to him, or some reaction to show...and have it ready for when my brother walked in the door...and when my brother did arrive, my dad said 'Oh boy, oh boy, oh boy!' the most words in a row he had said for at least a year and hasn't said as many since?

    When he leans back on the chair after I have just told him that he can lean back because the seat has a back...is that coincidence or is that evidence that he can understand and react to what I say? When I tell him my mum is coming to visit soon and he turns to me and suddenly says a solitary 'when?' is that coincidence or did he understand what I said and wanted to know when?

    I've been thinking these thoughts for a few years now, since Dad no longer 'talks' and has no obvious control over the movements of his arms and hands. And I think I've decided...he's still in there. We talk around him, the nurses manhandle him...but he knows what is going on.

    The good thing is, unlike the rest of us, most of the time he seems to be ok with that...our idea of happiness is completely different to his. We can't imagine that he could be happy in an old folks home unable to communicate or look after himself. But his idea of happiness is seeing his family come to visit, having some illegal biscuits and chocolates (he's only supposed to eat mushy food - but has been eating the contraband for the past 2yrs with no ill effect), and going for a walk with us all around the home and outside it too. His idea of happiness is hearing about the latest scientific progressions towards a cure, or other technological innovations. His idea of happiness is seeing us get so excited about him managing to lift his foot for a step, or seeing him laugh.

    The whole situation still tears me apart if I think about it too much,..but I try to take heart that these days its more me that is hurting because I miss the old Dad, because I worry that I could be doing more for him. I can no longer claim that I am crying because of his pain...because if truth be known, he seems to have come to terms with the whole thing far better than I have! Thats what it seems...and 99% of me is sure it is the case.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Nat,

    nice to hear from you again.

    I'm sure you are correct. Dad is still there. When you say
    I recognise it completely. Jan does it as well.

    I always think it through in this way.

    The normal ability to respond has been taken from Jan, but she wants to reply in some way, it just takes her a while to get her body to act in the way she would wish. All her concentration has to go on that.

    Without her brain having the ability to control things, the response may not be entirely recognisable to me - if I don't manage to adjust to her new dictionary.

    Once I make an adjustment to my own ability to understand, then things that appear just grunts, suddenly take on a nuance of meaning. They work consistently as I have tested it, because I am aware that I am desperately wanting to believe we can still communicate, and might simply imagine things.

    However, it works both with words and movements.

    It is a bit bizarre though, until one gets used to it! There was a sketch from the old "Two Ronnies" programme that was based on one of the UK quiz shows, Mastermind.

    The person answereing the questions had a specialist subject of 'answering the question before last' . The resulting lagged answers were always hilarious.

    Jan and I used to laugh at the sketch and it is weird that we now seem to be acting it out!

    Nat, I really like your posts and I'm so pleased that your Dad is still able to respond. Keep taking in that contraband!
     
  3. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Nat

    I think Brucie is right, your Dad is still there, it just takes a lot of hard work on his part to communicate, thats a testimony to how much he loves you, if i was you, i would cherish the memory that he works so hard to let you know.

    Love Alex x
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Nat,

    Your love, your knowledge of your dad and your insight into Alzheimers shines through your extremely moving post.

    No wonder your dad is still there, he wouldn`t want to leave you.

    With love
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    That's such a very good point Alex!

    So often we see conversations as they appear from our - receiving - end.

    We may get frustrated at our lack of ability to comprehend - or at the other person's inability to say something we can understand... or both.

    However, for a person with dementia, doing the simplest thing can be a major tour de force.

    Doing more difficult things - replying to a question might be one - takes not only an immense amount of concentration and energy, but also the will to do it, fired by love.

    Cherish is the word.:)
     
  6. Tina

    Tina Registered User

    May 19, 2006
    420
    I'm sure your dad is still there, Nat. Can't say much that the others haven't said already. But I know I always looked for signs in my nan and aunty that told me they understood what was going on, heard what we were saying, reacted to a touch or a caress.
    And how precious those moments were when there was a return of pressure to our hands, a movement of the head to where our voices were coming from, a look of peace and contentment on the face when they had found a hand to hold and drifted off to sleep.
    Wishing you and your dad lots of precious moments.
    Tina
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Nat, lovely to hear from you.....I was thinking about you the other day.

    I am sure your dad is still there, why would he not be? Just because communication is extremely difficult, does not mean the will to communicate is gone.

    Thanks for bringing us up to date, take care of yourself. Sending you a hug, and for all those carers out there.
     

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  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Oh Connie. You found him!!!:D
     
  9. Áine

    Áine Registered User

    oooh Nat ....... what a lovely post .......... made me cry.
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Nat, what a wonderful post. You know your dad is still in there. You know how much he loves you, otherwise why would he make the tremendous effort it takes to respond?

    You are a wonderful, loving daughter. He must be so proud of you.

    Love,
     
  11. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    My Dad LOVED Mars Bars - strictly forbidden because of his diabetes! Two days before he died, I took him one. He only ate tiny bits (choking difficulties) but he kept putting out his hand for more! I told him I'd buy him another one if he finished that one, and he squeezed my hand.

    We didn't know then that he wouldn't live to eat another one. I'm just so glad that I took him his "contraband"!! So, Nat, do as Bruce says, and keep on taking it to your Dad.

    In the scheme of things, it is hard to take that the most I could do to ease his dying (Dad's) was to feed him ittle bits of Mars Bar. :(
     
  12. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    My Dad LOVED Mars Bars - strictly forbidden because of his diabetes! Two days before he died, I took him one. He only ate tiny bits (choking difficulties) but he kept putting out his hand for mnore! I told him I'd buy him another one if he finished that one, and he squeezed my hand.

    We didn't know then that he wouldn't live to eat another one. I'm just so glad that I took him his "contraband"!! So, Nat, do as Bruce says, and keep on taking it to your Dad.

    In the scheme of things, it is hard to take that the most I could do to ease his dying (Dad's) was to feed him little bits of Mars Bar.:(
     
  13. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hi Nat,

    I found your post very moving and positive considering all you are going through. Thank you so much for sharing that with us.
    Jackie
     
  14. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    Hi Nat
    just read your post it was very moving, for the last 4 years of my mums life she could not talk walk and communicate as so we thought. She just use to sit and stare, while my mum was in respite i visited her and i sat there talking away and the next minuet her eyes just filled up she looked directley at me and put her arms out for a hug i complealty fell to pieces. It was as if for those few seconds she realized it was one of her daughters sat there it broke my heart, on another occation my sister was as home with her my dad had gone shops and my sister thought she was about to have a fit as my mum just fell back in that split second my mum said iam alright love she had not spoke years preiveously to this. It is just so sad another time i visited her she just followed my round the room and then got upset again it brakes me heart when i look back at this my mum was 54 when diagnozed and passed away at 62. My dad was her full time carer to the end and when we always brought her back from respite she use to just suddenly become aware my dad was there. Its just so iam sure deep inside they are aware of loved ones around them but its the communicating that is just so difficult you take care

    kathy x
     
  15. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Thanks everyone so much for your comments.

    Dammit I LOVE MY DAD SOOO MUCH AND IT HURTS SOOO MUCH.

    I know you all know how I feel!

    Its weird how you don't realise how much you love someone until this sort of thing happens (and it just keeps on happening for years and years and years!!)

    I never realised how much Dad is like a part of me, he is so integral to who I am.

    I wonder if its because I am made from him? Not just the genes but because of his influence in creating my personality.

    I didn't think someone else's dying could affect my whole life like it does (for years and years and years!)

    Would like to hear from spouses of people with dementia as well as blood relatives - why does it hurt so much, why can't we get over it???
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Hi Nat,

    I think when someone is a constant part of your life, and a good part of your life, you don`t even think the day may come when they may no longer be there.

    On top of that is the agony of watching the slow deterioration.

    We can`t get over it because we are still living it.

    We are all with you Nat, whether son, daughter or partner, the heartache is the same.

    Love xx
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Nat

    I understand completely your pain. I think you are right that you are hurting so much because of the huge influence your Dad has been in your life.

    That may also affect spouses/partners if they have been together for many years. I'm sure Bruce and Norman would agree with that, but there is so much more.

    It's the loss of half of ourselves, the loss of a constant companion, a soulmate.

    In my case there's the added factor of the gratitude I feel to John. We've only known each other for 12 years, seven of which he's had dementia. But he rescued me from 14 years of loneliness and depression following the loss of my first husband and our daughter. I didn't think I would ever find anyone else that I wanted to spend the rest of my life with; meeting John was a miracle.

    I hate the fact that I am losing him bit by bit, and I fear the fact that I will in the not too distant future be returning to the loneliness I thought I had left behind.

    I'm not saying my pain is worse than yours, or anyone else's. We're all suffering, and all we can do is support each other wherever possible.

    We are so lucky that we have each other.

    Love,
     
  18. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #18 jc141265, Jun 19, 2007
    Last edited: Jun 19, 2007
    Yeah thats what i thought Hazel, my parents have been together for over 40 years....my Mum doesn't know life without him.

    One thing that can extra freak family out tho, is also the worrying about those genes...can this happen to me, will it happen to me too?

    No way I am saying anyone's pain is more than another's though we all just feel it in different ways for different reasons I think.
     
  19. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Also, I worry about my Mum (even though we don't get along a lot - and I don't agree with her on many things).

    The world was a very different place when she married my Dad, and I know she can't imagine life without him.

    She is coping quite well...but its sad for me to see her devastated like this no matter how much we dont agree.

    No doubt she feels sad thinking about how I feel about losing my Dad as well.

    I worry about how she's going to survive without Dad providing for her (his Super is currently looking after her, but it won't last forever, and she's only 61 and her own mother 101).
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    As parents we all worry about money , but the main thing deep down , even if you lose the man you Love . The main thing that keeps your going is the Love you children have for you , Is worth more then any income you have not coming in.

    So my point is , that as long as your mother has your Love support ( even if your not living with her ) and she on a low income , she will learn to cope in the future without your father around, it be hard but she learn with your support of love
     

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