One man's story (from daughter's perspective)

Discussion in 'Younger people with dementia and their carers' started by jc141265, Dec 5, 2007.

  1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I grew up thinking my Dad was the smartest man in the world, he was a chess champion, a boy from a poor Irish family who made it to the big time, married the town beauty queen from a rich family, got selected to learn computer programming because of his genius IQ score, then went on to become CEO of the same business. When I brought home Maths questions or challenged him with every brainteaser under the sun, he never didn't know the answer. He was good with his hands too and there used to be nothing I liked better than making things like shelves or tables for my room with him. That and many other warm fuzzy thoughts are my childhood memories of him.

    Then I remember when I came back from a year and a half stay in Japan and went home for a day, and asked Dad if he could help me make a frame for a picture I had and was rather bemused at the difficulties he was having working out how to make a simple rectangular frame...9 months later on Christmas day I played the simple strategy game of connect 4 against him and absolutely freaked out in amazement when I beat him again and again...oh how I teased him! I thought I'd finally gotten as smart as him! Three days after xmas (my brother's birthday - poor thing) Mum and Dad sat the whole family down to tell us that Dad had been diagnosed with early onset alzheimers disease at age 53ish...that they had known for about a year but as he had to sit hundreds of tests and the family hadn't been in the same place at any one time for the whole year they had decided not to tell us till then.

    But then Alzheimers didn't seem like too bad a disease...we were told he'd have about 10yrs, so that wasn't too bad, better than if he had had cancer like all his other brothers and sisters, and anyways Alzheimers was just that disease where you do silly things like forget the kettle or iron is on, and get lost in shopping centres...nothing to majorly upset about. We even joked that day about how we'd wrap up the current year's xmas presents and give them to him again next year.:(

    And at first it wasn't really that bad at all. Yeshe couldn't play connect four or chess like he used to but pretty much most of the time you couldn't tell that there was anything wrong with him...

    In 2000 I remember the first moment when it began to be noticeable though there had been little things like him no longer driving, along the way.... I went to my brother's wedding and we were all getting ready at the hotel and I saw my Dad standing in front of the mirror holding his tie and looking defeated. He'd tied his own tie for 30yrs but that day my brother in law had to tie it for him. I had to leave the room so that he wouldn't see my tears for him, for me. That evening although he was the father of the groom he made no speech, he was no longer able to tie long strings of words together. A man who used to be CEO of his company, who regularly made speeches at work events, family events, and even community events.

    Not long after the wedding I remember being in the shops with Dad, following Mum around as she did her shopping. I ,despite almost being 30, took his hand and held it the whole time, because although I knew it might look a bit strange, I also knew I would regret it later if I didn't, I knew I was losing him. He didn't ask me to let his hand go either, so maybe he felt like he was losing me too.

    Then there was 18months where it didn't hit me much at all as Mum and Dad moved to Melbourne for that time as Dad participated in a drug trial and we were full of hope. The trials went well, but Dad continued to go downhill, explained at the end of the trial by the fact that he was one of the unlucky ones who were given the placebo. He did get given the real thing at the conclusion of the trial and we wonder now if that is why he has lasted so long, but the doctors at the time did feel he was already past the optimal point for it to be much good to him.

    When Mum and Dad finally came home again, Dad no longer talked...he could say, Yes and No and appear to be following a conversation so it wasn't really noticeable but as my husband has pointed out to me, he's never heard dad say much more than that. As his language failed, Dad became more and more frustrated, one phrase he did still use frequently showed this, and he used it so much it became a phrase that all the family used in times of frustration, it was a simple muttering of 'Bloody, bloody, bloody!' but it said it all.

    When my parents used to visit, I'd notice that when they left the bathroom tap would be left running as Dad 'forgot' to turn it off after washing his hands, then we'd go to the shops to have lunch and Dad would try to eat his sandwich by taking just the top slice instead of the whole sandwich...chips and chicken nuggets soon became the popular thing to eat...if he was given a knife and fork, he used to hold the knife up the wrong way so the sharp bit was facing upward....then there was the day Dad first wet his pants...:(

    My Mum would just yell at him when he got things wrong, she was so angry at him for being 'stupid'. And he would get angry right back. My sister and brother moved to my parents home town to help, and my family constantly told me how i was living in denial and not helping at all. They wanted me to spend more time with Dad and to help Mum, but I could see how upset he was for me to see him struggling and all I would constantly be doing when I was with them was defending Dad and trying to understand how he must feel when they were pushing and shoving and trying to get him to behave like a normal person, which clearly he no longer was. I don't know if I was doing the wrong thing, but I was just doing the best I could..

    Then there was the period when Dad got depressed, where he would cry and one time he actually lay down on the floor and just sobbed. Please correct anyone whoever suggests that this disease is a quiet gentle way to die and quite pleasant as you don't know what is happening to you...

    My mum rang me up one evening near Dad's birthday and asked me to come visit as she was afraid he was so depressed he might do something crazy, he'd been muttering about the guns they had on the farm and she'd hidden them. I was sick with fear, and the very next morning drove the two hours to be there for him. I took him a birthday card and a present. Wasn't sure because he could no longer tell me, but I as I suspected he couldn't read anymore, I read the card to him because I really hoped he would feel better for my words. In it I said how wonderful he was/is and how it didn't matter to me what he could and couldn't do anymore, that just his smile gave me an unbelievable strength, that he had made me the person I was today, and him just being there was the most wonderful thing in the world to me and that if he could continue to be there I could continue to be strong. I think/hope he understood.Sometimes I wonder though if I was wrong to make him feel like he had to be strong for me, sometimes I wonder if he would have been better off if he had just found one of those guns. I'll never know, but either the disease changed, the drugs worked or he took some solace for he stopped muttering about guns and the tears ceased, and the next stage of the journey began....the true madness...

    The timeline is all blurry now, but I remember this period as a time of anger, rage, fear and yelling. Dad began to see imaginary people, or imagine reflections were people. Sometimes he would quite like the people he saw, smiling and nodding at them, sometimes he seemed to indicate that they were people that we knew were dead and gone, sometimes he'd seem afraid of them, and he'd mutter a lot about the 'bad man'...You would wonder if he was crazy or whether he was just able to see things that we couldn't...Then he began to yell at them, and when I say yell I mean yell, yell like someone is taking your life, a deafening roar, coming from his very soul. He would do this at home, but he would also do this in the shops or in the car. Sometime he would grab you as well and almost break your arm his grip was so savage as he yelled. People would stop and stare at him in horror, or look on in disgust at the weird crazy man who they no longer considered as a human. This man that people once respected and were awed by, who was legendary in his small town for being so intelligent and strong minded.

    And again, I have to point out that I only 'think' he was yelling at people he saw, he might have been yelling instead because of some pain in his head, always with this illness it has only been guessing for he could not/ cannot tell us what he is thinking and feeling. I think it was 'people' as he seemed to do it more often when there were reflections about...and in fact I got so used to it, I could feel his yell coming on, could see him look at a reflection, feel his body begin to tense and then it would be minutes of terror wondering if I could distract him, talk him out of it, before he went crazy. I learnt after a time, to pick up on it earlier and earlier and would quietly say to him over and over again 'Dad they are reflections you are looking at, remember that, see only reflections, you know that they always make you angry, lets not look at them anymore, lets move over here away from them' and it still haunts me today that that little talk would work more often than not, because that suggests to me that there was/is still a sane person under it all trying to stay in control. I learnt at this time, that the worst thing you could do was to yell back at him, or try to forceably stop him from looking at reflections, his anger was always uncontrollable then if you tried that. Next time you walk through a shopping centre have a look around and see how many panes of glass there are, next time you walk the street, look at all the reflections on cars. We stayed in a hotel at Christmas and had to cover the mirrors (a lovely decoration) with sheets!

    He'd do other things too, you'd pour him a cup of tea which he could still manage to hold and drink although not very well..and if he'd a particularly bad day where he'd been yelled at a lot by mum, he would just look her in the eye, and then tip it just enough to have it spill all over the carpet and you'd wonder...did he mean to do that? He was completely incontinent by this stage so would have to be changed by Mum and if I was there I would try to help, but he'd grab hold of you and bruise you, yell at you and be so angry...and all the while you'd be thinking 'Can't really blame him, this would be humiliating.' I cant remember all the naughty and sometimes hurtful things he would do (oh yes, he did have a lovely habit of reaching out as if to touch me and then hitting my face) but I do remember being confused...instinct would say he shouldn't be allowed to do such things and not be reprimanded or punished but then logic would say he has no control over what he is doing, then doubt would say, or does he? Most of the time, I would just do my best to avert any trouble from him, but Mum and him clashed all the time, and it was around this time that I began to see bruises appearing on his arms quite regularly.

    She in all her frustrations would often tell me about their fighting and again I found myself in no-man's land wondering what was the right action to take, as she'd tell me her behaviour which I couldn't approve of, but how could I reprimand someone who must have been going through a terrible time already, who was already hurting as she felt her husband was hurting her? I remember being appalled one day when she told me how as Dad refused to get out of the truck and insisted that she take him home instead despite the fact that they were parked in front of the house, she got the hose and hosed him out of the vehicle. I was devestated for my Dad to be treated like an animal, I was devestated for my Mum to be driven to such behaviour and I was devestated for me as I no longer had parents who could support me. The violence and the anger continued on and on, Dad got more and more bruises, and I went to see a counsellor because I couldn't seem to stop crying. Then one day Mum and my sister and my 3yr old nephew appeared at my door to tell me that Dad was in hospital, that he had been locked up in an isolated section of the hospital because he was violent. I was told my Dad had chased my mother and she had had to lock the door of their bedroom and had sat their terrified as he tried to break the door down. My Mum told me that no one was allowed to visit him for a couple of days as he was deemed too dangerous and once again I was devestated. I remember it was around my nephew's birthday, he was about 3, and as he sat there colouring in his new colouring book I had given him, I remember the pale horrified look on his face as he listened to his Mum and saw his Grandma crying and heard about his evil Grandad. To this day when I look at that nephew I always think of his face, and how I thought at the time, what does this do to a child, to see this horrible situation, to not be shielded from it, at such a young age? It always makes me sad that even now he seems to despise his Grandad, one day when he's old enough I'm going to try to tell him what a great Grandad he really was....

    As it turned out, I couldn't bear the thought of Dad being alone in the hospital with noone he loved near by so I thought I'd at least go ask about him, check that he was okay, see if there was anything I could do to let him know I was there. When I did, you can imagine my surprise and suspicions when the nurses told me that 'Oh no he's allowed visitors, its only your Mum who isn't allowed to see him.'

    So I visited him, they'd open the door by keying in a combination and then I would be locked in the room with him, with the nearest nurses being more than another room away, me not able to get out unless they answered my call and I'd wonder if my Dad might kill me in a sudden craze...but I refused to let the fear take over and so in I would go and just sit with him and try to talk to a man who couldn't talk anymore, who I wasn't sure I knew anymore, but who I still loved more than anything in the world. He seemed happy to see me sometimes, and seemed to want me to tell him things, and I would do my best to make him feel loved. I think he was there for about a week, and each day I would get locked in with him and the nurses on duty would look at him in fear as they locked me in. They'd tell me how he'd bang on the door like a crazy man each morning and I'd think to myself, I'd be banging on the bloody door too if I was locked up and couldn't understand what was happening! I tried to reassure myself that he was still human, that he wasn't unpredictable like a crazy animal but I could never really be certain as I'd seen him angry for no apparent reason, many many times.

    The next time I visited my counsellor, I told her about it all...but made the mistake of hinting at my suspicions that my Mum was possibly being more violent than my Dad. At which time she told me that I would need to be careful for although she was my counsellor she had a duty to report any instances of abuse if they were brought to her attention. I was mortified, and in tears told her that I didn't know what to do, I didn't know what was better for Dad, I asked her if she really thought that him being put in a home with questionable care and away from his family was better for him than living at home with his family...even if he was getting physically abused, and I couldn't be entirely sure it wasn't warranted to some extent. This was a question I had been struggling with for some time and I couldn't for the life of me come up with an answer I was sure of. Worse yet, when I was finally angry enough to want to get Dad away from my Mum, after he'd been locked up in the hospital, full of suspicion that he was locked up there for his safety rather than hers, on the day that she finally came to take him home, as the hospital felt it would be safe again, when he saw her he burst into tears he was so happy to see her. I wanted to look after my Dad, but he didn't seem to want me, he wanted my Mum despite it all, and I felt that that was his choice, no matter how much I worried about it and didn't like it.

    Nevertheless, it wasnt very long after this that he did get put in a home permanently (until just recently 3yrs later when he's been taken back home by my Mum and thankfully they now seem to have gotten over their love hate relationship and she is just nice to him). I'll quickly finish off now as there is so much more I could talk about but I can't go on forever. Other things I wanted to talk about, but have cut short:
    * Before Dad went to a home permanently he had a fit at home and stopped breathing, got taken to hospital and we thought he was going to die. Before that had happened there had been many times that I guiltily wished he would die, so it would all be over, but that day as I drove an hour to the hospital I bawled my eyes out the whole way and said over and over again 'Please God I didn't mean it, I don't want him to die. I'm not ready!'
    * In Dad's angry period he began a habit of grinding his teeth constantly and the noise can send you crazy, our final solution was bubble gum!
    * Before Dad went into the home permanently he used to get put into respite for 10 days at a time. The heart break of again seeing him locked up and abandoned is impossible to describe. The sheer terror I felt when I walked into his room at the home one day and found him on the bathroom floor slipping and scrabbling in a pool of his own blood, with blood all over his face and half his ear torn off from a fall he had had, is also hard to put into words that truly capture the emotion I felt.
    * The sadness of seeing my poor Dad have to wear a footballers protective helmet around everywhere like a truly retarded person, when he was walking, in case he fell again. It took me a long time to come to terms with the fact that my Dad was mentally disabled now. (I think in way though, this has had a positive side for I understand now that it doesn't matter if a person you love is mentally disabled, you just love them anyways...previously I was guilty of the same prejudices most people have when they haven't been exposed to disabilities)
    * The sadness of seeing him lose the ability to feed himself, and having to feed him when I visited him at the home.
    * The little bit of constant hope that used to hurt so much because there was so much doubt around it when he would seem to understand what I said, or when he saw my brother for the first time in a year and said clear as day 'Oh boy, oh boy, oh boy'.
    * How it felt to have my mum put him on the phone when I told her about my engagement and he couldn't talk to me, and I couldn't tell if he understood and then to finally have mum take the phone back as he had begun to chew on it and I stood there in tears holding the phone to my head, thinking that this is supposed to be the happiest day of my life.
    * How if felt to know my Dad would never see me get married, never walk me down the aisle and if I did have children they'd never know him.
    * How I used to take him biscuits and put one in his hand and tell him it was just practice and if he didn't want to do it he didn't have to but if he did want to he could try to use his hand to put it in his own mouth...and how he used to sit there for 10minutes and then eventually he would do it...and we'd both beam and grin...and then how eventually he could no longer do that either.
    * How I used to walk with him each day for an hour, up and down the halls and around the home, never knowing if he knew who I was, never knowing if he cared, but hoping that that smile that would sometimes light up his face when he saw me meant that I did bring some joy to him anyways. How when we walked and we reached a wall or door, he would raise his hands up and hit out at the door before turning and give a yell, and how I used to join in with him, so we were two bloody nutcases walking together doing our thing together!
    * How horrible it was at the home, how it could be terrifying in its own way as you were locked in a section with 30 people who'd lost their minds and often no staff to be found. How you could get quite attached to the other 'inmates' only to then see them die. How you could do nothing to help any of them really, and only hope that they got something from the smile or pat on the hand, or little crazy chat you had with them.
    * How I used to be terrified myself of ending up like Dad, but how for some reason now, I am okay with it all, and it no longer seems so scarey...not that I would wish it upon myself or my family in a million years!
     
  2. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Dear Nat, I just don't know what to say to you.

    Your story has moved me so much - how wonderful that through it all you have continued to see "your dad" through the mask of dementia.

    Thank you for being so brave to tell your story.

    {{{HUGS}}}
     
  3. germain

    germain Registered User

    Jul 7, 2007
    342
    Nat,

    How can I possibly reply ? Just to say thinking of you and sending virtual hugs

    Germain
    xx
     
  4. zonkjonk

    zonkjonk Registered User

    Dear Nat,
    words fail me. I have the utmost sorrow for your family. You and your family have been through the most dreadful, terrifying and grief ridden time.
    Your post encaptures the worst of this horrible disease. Who could read this and not cry?
    Bless you for always giving your dad your time, care and your love.
    Kind regards,
    Jo
     
  5. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Nat,
    As other messages have said, I feel for you and your family. Those who are going through that stage at present, to put it into words is so hard. As my husband is in last stage aged 62, during the last four years so much of what you have written comes to mind.
    By writing it down, they say it relese a burden from the mind. I sincerely admire your courage in doing so.
    Best wishes. Christine
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,847
    Kent
    Dear Nat,
    This Post is a legacy to your father and a credit to you. As long as this post is alive, your father will never be forgotten.
    Love xx
     
  7. clarethebear

    clarethebear Registered User

    Oct 16, 2007
    197
    manchester, uk
    Hi Nat

    Wow, how moving the story of your father is. I'm sure all that read your post will not go away with a dry eye.

    You have hit the nail on the head some many times with your words. Thank you so very much for sharing your story with all of us.

    {{{{{HUGS}}}}}

    Take Care
    Clare
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Nat, the combination of your eloquence and raw honesty are a powerful mix.

    I know your words can't change much for your dad - but you really have the potential to 'make a difference' for future generations of sufferers and carers ..... if you can bear to write it - please, please do - and to a far wider audience than TP ...... and treat it as cathartic - your dad's legacy could yet go much further than his devoted daughter ....

    Love and admiration for your courage alone. Thank you so much for sharing that - and no, I didn't get past the first sentence without crying.

    Karen, x
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Nat, your love for your dad shines through every word.

    A wonderful, moving account. You are lucky to have felt such love, and your dad is lucky to have such a loving daughter.

    Love,
     

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