1. MrsP

    MrsP Registered User

    Mar 19, 2005
    Hi Everyone

    Just wanted to get a few things out really............ Dad isn't doing too well at the moment. Last time I saw him, my husband thought he was doing really well, (which he was) but it turns out it was the best day for months.

    I know I'm talking to lots of people who have been through all of this, and maybe I should be grateful that the progress has so for been slower than I had anticipated, but I can't help getting upset at how things are. Knowing that my wonderful, intelligent Dad has now got carers helping him to get dressed, is totally unable to tie his own shoe laces (which I have just successfully taught my 5 year old to do), forgets to eat, can't change channels on the TV, can't read, and his eyesight (or rather vision) is failing more and more........... He's even stopped going for walks into town which his one bit of independence of which he was proud (the reason for this remains a mystery, my Uncle thinks that something happened but not sure what). He goes to bed when it's dark (a bit of a problem in the winter), and I confuse him when I phone.

    I can't imagine what it must be like for him during his days, he used to be constantly busy with work. How cruel a situation for a 53 year old man. I wish my daughter's fairy wand were real...........

    I know there's nothing anyone can do or say, just wanted to write it down.

    Thanks for listening, Kate x.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    So sorry, Kate. Alzheimers is a curse for everyone, but to be stricken at 53, is even more heartbreaking.
    Does he still know you and your family? Can he get any warmth and comfort from family contact?
    There is nothing anyone can say to help ease your pain, but at least on TP, everyone understands your pain, and is going through comparable pain. Keep posting. I hope you get the strength to cope. Sylvia x
  3. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    Hi kate

    So sorry you dad is not doing to well, it is very hard for family members to watch a loved one suffer with this terrible illness. my mum was 54 when she was diagnosed its hard it heartbraking the only thing i can say is to take one day at a time its hard i know you take care
  4. chip

    chip Registered User

    Jul 19, 2005
    Hi Mrs P
    My husband is 53 also and sounds the same as your dad. He was 49 when it started. My husband has went against our son so its hard for him. My husband also has myoclonic jerks. Its hard i know and with a bad care system as well. I'm thinking of you
  5. MrsP

    MrsP Registered User

    Mar 19, 2005
    Thanks for the replies,

    Dad does still know who we all are, he's still in the 'early' stages, and has moved closer to his brothers and sister so I know he has loads of people who visit all the time. Unfortunately my brother and I don't live nearby, and as I have my own family it isn't easy to visit frequently, and often when I suggest it Dad finds an excuse for me not to go. That means that when I do see him there's always such a huge change- I guess it's easy to not see it when you're there every day.

    I spoke to Dad yesterday, and although most of what he said was relevant (talking about the murders in Ipswich not far from where I live), he then started talking about some things that I just know aren't 'real'- he now seems to get mixed up a lot with his perception of situations.

    It still makes me feel good that we can have a decent conversation at times, but it's all dependent on how good the day is. If I could have a Christmas wish, it would be that he still remembers me next year. Can't ask for more than your Daddy, can you.

    Thanks again for listening, love Kate x.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Kate, When your dad makes an excuse for you not to visit, ignore it if you can and go.
    If you leave it a long time between visits, he`s more likely to forget you, sooner rather than later. I don`t want to be a scaremonger, but that is what might happen.
    If he`s still in the `early stages` he most probably does want to see you, but when he does, it will require effort on his part, to make you think he is fine. In a way, he is protecting himself, because the effort needed is hard. He is also protecting you, because he doesn`t want you to see him deteriorating, as he doesn`t want you to worry.
    My husband was like this with our son. When he visited, my husband presented himself as if there was nothing wrong. When our son left, I could hear the sigh of relief.
    I`m glad your dad has other close family nearby, but you are the closest.
    Take care, Sylvia x
  7. MrsP

    MrsP Registered User

    Mar 19, 2005
    Dear Sylvia

    Thank you, I understand what you're saying. It has been hard for the past year (due to a rather difficult pregnancy) to get to see him; now things will be easier and I have agreed with my husband that we will make much more of an effort. His deterioration mas made me realise that a few months (which didn't used to be a problem) is now an eternity.

    Like you said, he wants to protect me I'm sure, but it doesn't always work out that way.

    Best wishes, Kate x.
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, Dec 15, 2006
    Last edited: Dec 15, 2006
    I join you in your pain, just thinking about that day , that my mother shall know me, know more , is such an unbearable pain , that I feel like crying my heart out, and can’t find a way out of it , that its going to happen and I am going to have to face it, I have never talk about this part openly to myself , only today when someone said that they have work with people with dementia and that part happen, I went in to the park and cried , ask god where was he ,as I need courage to see this to the end, try to hide my pain from my mother.

    I remember in the early days of the on set of dementia with my mother, I thought it was going to happen soon, 4 years on mum still knows our family and me and I can still go into denial about it , because I don’t like the pain it give me . One day yes its going to happen, the only way I cope with it is stop thinking is it all worth it when she lose all her memories , so unfair yes it is a cruel disease .
    recognizing where my pain coming from feel it don’t be scared of it , think of something ales , try enjoy the time I have with her now .

    every one cope with pain in diffrent ways , just shareing mine .
  9. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Excuses not to visit. I remember "you can't come because of the home help, the gardener, the flu jab ..." when each of those people or things was only going to take an hour or two.
  10. MrsP

    MrsP Registered User

    Mar 19, 2005
    Unfortunately Dad has been unwell quite a lot over the past two years, and the excuses tend to be 'I've got a stomach bug' because he knows that I can't go with the baby if there's a chance of catching it. I've decided (maybe somewhat unfairly) to go visit next week and not tell him until I've set off, that way he doesn't have time to panic or make up excuses.

    Hopefully it will work out well..............

    love Kate x.
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Kate, I hope your visit isn`t too traumatic. It really does sound as if your dad wants to avoid seeing you, you spare you the pain of seeing his deterioration. Poor soul.
    Please post after you`ve seen him. I hope he will be OK. Love Sylvia x
  12. Dar Griff

    Dar Griff Registered User

    Dec 5, 2006
    If you leave it a long time between visits, he`s more likely to forget you, sooner rather than later. I don`t want to be a scaremonger, but that is what might happen. ( Grannie G 15.12.06)

    My brother lives in Scotland, my dad in South Wales. He doesn't come home very often & manages to avoid telephone conversations too. Last time he was home..... Early July..... my dad was having a confused day & mistook my brother for a burgler. Gareth hasn't been home since & telephone conversations are increasingly hard work by all accounts.

    Don't put off what you may regret in the future when things deteriorate. It's hard now & it won't get any easier.

    Hope the visit went as well as possible for you.
  13. loobyloo

    loobyloo Registered User

    Dec 15, 2006

    Hi Kate,
    Sounds exactly like my husband who is 62 and has AD for 5years. He won't go for walks now as he can't use keys, so unless neighbours are in he is stuck indoors. He won't take the dog as he has lost his confidence and gets very frightened especially at night time. He gets very disorientated and seems to wander around the house aimlessly. The phone and TV controls are a mystery to him. I would like to continue working, only a part time job, but I need the money and also the company. Social services are very slow to help, if indeed there is any help. We rely on friends at the moment but that can't last much longer as his illness seems to be progressing rapidly now. What a terrible disease.
  14. MrsP

    MrsP Registered User

    Mar 19, 2005
    Hi everyone

    Phoned Dad today to tell him we're going to visit tomorrow (thought I'd better check that he would be home before I drive for 3 hours!!). He must have been holding the phone with the earpiece at his mouth- I could hear him but he couldn't hear me very well. Managed to shout down the phone that we are dropping by tomorrow, which he heard thankfully! Just another 'small' thing that makes you aware that all is not well, but I have to admit it brought a smile to my face, picturing him with the upside down phone to his ear (if you don't laugh,.....).

    Thanks for all the replies- it really makes you realise that time is precious, and I want to make as many happy memories as I can for my girls and me (as I'm all too aware that Dad's won't last).

    Will let you know how we get on, love Kate x.
  15. MrsP

    MrsP Registered User

    Mar 19, 2005

    Dear All

    Saw Dad yesterday (as much as I could through the horrendous fog), have quite mixed feelings about the whole thing.

    Arrived at lunch time, he offered a cup of tea which I found encouraging. Boiled kettle............... forgot what he was doing. Was obviously aware that he should be doing something so kept getting up and wandering then sitting back down again. To prompt I asked where the cups were. He got out the cups, one the right way up, one upside down. Tried to get the tea bags in, then realised one was upside down but didn't turn it around, left the tea bag on top of it. Then walked away and sat down.............. I finished tea. (Not quite sure I wanted to see him pour boiling water anyway).

    My daughter and I ate lunch, kept asking Dad if he wanted his sandwich (left in fridge by carers). He offered to make us some instead and went to get the ham (I've been vegetarian all my life!). Showed him our sandwiches and eventually he ate his.

    He likes to tell us facts of history, noticed that when he stood talking he started off facing me and eventually turned round and was talking to the wall. Offered to show me where the ladies loos were saying with a laugh that when they'd built his flat they only put one little toilet in, the ladies we in the corridor (not, of course). Showed me the view from his window and pointed to where he lived (the lamp post outside). Went to shop across the road, obviously girls in there look out for him which is good when he tries to give them too much money. Has difficulty with the bottom two steps out of his 1st floor flat- I found him clinging onto the handrail to make sure he could manage them.

    And yet he still managed to play with my daughter, managed to sit with the baby on his knee for a short time, managed to tell a few stories and laugh at my daughter's jokes (Q. what's the smelliest animal on the farm? A. a toilet duck!!). He looks like a 53 year old, but his eyes have a haunted 95 year old look about them, he looks totally lost in himself. And the worst part is that he can still say 'I can't do a great deal of anything anymore', I wonder if it will ease for him as the disease progresses, or if he will just feel more lost.

    All in all I'm happy that I went but have returned with a heavy heart because he's looking so sad and frail. We're going again in 3 weeks. Have to put on a big smile for my children, don't want to be miserable for Christmas.

    Here's wishing everyone a Very Merry Christmas and a Happy 2007, with love and best wishes, Kate x.
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    So glad you went, Kate, even though your visit gave you a clearer picture of your dad`s deterioration. At least he didn`t try to put you off and was able to acknowledge his difficulties. Hopefully, he will stop making excuses for you not to go, from now.
    Have a good Christmas, Sylvia x
  17. Nell

    Nell Registered User

    Aug 9, 2005
    [QUOTE=Grannie G]Dear Kate, When your dad makes an excuse for you not to visit, ignore it if you can and go.
    If you leave it a long time between visits, he`s more likely to forget you, sooner rather than later. I don`t want to be a scaremonger, but that is what might happen.
    Take care, Sylvia x[/QUOTE]

    I absolutely agree! Even if he says he doesn't want / need to see you, I'm sure he'll be glad you came. If the house is a mess (or something else is not quite right) and therefore he feels he doesn't want you to see him in a muddle, it will give you an idea of how he is coping.

    I think one of the worst things about this disease is how it robs our patients od their natural dignity. This must be very hard in a husband / wife situation, but is even harder for those of us whose parenbts are sufferers. It is so difficult for the parents and the children (even those in their fities!) to see the role reversal taking place and not being able to do anything about it.

    Thinking of you - Nell
  18. MrsP

    MrsP Registered User

    Mar 19, 2005
    I went to see Dad again after Christmas, and my Brother came along too (hurrah!!) Won't ramble on too much, but he looks so tired, and was so subdued. We went out for lunch with a few relatives (7 adults and 2 children) so I guess it was hard for him to keep up with the conversation. Unfortunately when he did speak he was quite offensive which took me a bit by surprise- I know it's common but I didn't expect it. My baby was grumbling because she was tired and couldn't sleep with the noise and I apologised for her grumpiness, when he came out with "give him a good slap, that's what he needs"! For a start 'He's a she, and although he may have thought something that in the past, he would never have said it out loud.

    All in all, he seems to be going slowly downhill (not surprising of course but sad nevertheless). I'll be going again soon.

    Regards, Kate x.
  19. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Kate,
    No matter how hard we tell ourselves that it is the illness, it still hurts when these things are said, especially when it is against the grandchildren that our parent should be adoring - that's how it is on the telly after all! I can imagine how you felt - but you do know,it's only the illness:(
    Love Helen
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Kate, One of the most difficult aspects of AD is my husband`s indifference to our grandchildren.
    When they`re not with us, he talks about them with love and interest. As soon as they come, he seems to switch off. They all sit on the sofa, on their best behaviour, it`s so unnatural, I feel really embarrassed.
    Sometimes when the doorbell chimes, he grimaces and says `Who is it now?` as if we`re constantly being pestered by visitors.
    I think it`s hard enough for them to cope with themselves, never mind be sociable.
    Try not to let it get to you too much. Easier said than done, I know. Love Sylvia x

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