1. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    I've just registered on tp today and I feel like a light has been turned on inside my head. My wonderful mum was diagnosed with Alzheimers just over a year ago at a very early age. She has gone from being an active hands on mother and grandma to someone who probably couldn't tell you the day of the week or the year that we're in. At such a young age myself (only 28) I'm sharing the responsibility of caring for mum with my dad, along with a challenging job and a young son.
    Friends and other family members are a good listening post but none of them can understand how awful it is to see someone you love and respect so much go through such a terrible illness with no hope of getting them back to how they were.
    Today, after reading other comments made on TP, for the first time I feel that there will be people who I could discuss things with that truly understand how I'm feeling.
     
  2. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Welcome

    Welcome to TP, Kaybe.

    TP has been a lifeline for me, and I am sure it will be the same for you, as you are now in contact with so many others who, as you say, will understand what you are feeling and saying and will be able to help with advice or just by listening to you - often there are things we can't easily say to those who haven't been there themselves. Members of TP are a great bunch of people!

    Kind regards

    Ruthie
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Kaybe
    glad that you have found this site,you are very welcome
    Post whenever you feel the need,ask all the questions you wish,we cannot provde all the answers or solutioms but we can give the benifit of our experiences.
    Have you had any of the factsheets?
    If not go to the top lefthand corner of this page and click on "Fact sheets"
    Best wishes
    Norman.
     
  4. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    Thanks Norman and Ruthie.
    I did print of the fact sheets (there's quite a few!!) and have been taking some time to read through them.
    I'm actually going away today for the weekend with some friends for a well earned break. My trusted husband is being left behind to help out my dad. Thanks again for replying.
     
  5. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    :) Dear Kaybe

    I am in a similar situation to you, being young with a family and a responsible job. Sometimes things get too much, that's when I come onto the site. I'm glad that you are getting away for a weekend; a well earned break I'm sure. Hope you have a lovely time. Thinking of you, Kate.
     
  6. Geoff

    Geoff Registered User

    Jun 5, 2004
    12
    Hi kaybe

    Hi Kaybe,

    Just wanted to say that, like you, my mum was diagnosed when I was only 27, my younger brother was just 20 and my older brother 30. That was nearly 7 years ago and we've been through some tough times dealing with all this illness has to bring.

    To come on here, which I've been doing more of lately, really does help. When you read some of the posts its as though you could have written them yourself, the " stories " are all too familiar.

    Knowing there are people in the same boat, that know first hand what your going through because they either are or have already been through a similiar situation is a great help. Friends can help in their own way, even if its just to take your mind off things for a while but somewhere like this is good as you are with people who are living through the same situation as yourself and you can draw from their experiences.

    Good luck to you and yours.

    Geoff
     
  7. alice b

    alice b Registered User

    May 7, 2005
    4
    Essex
    Hello kaybe,
    When I read your message about your mum it brought a lump to my throat. I to feel robbed of the mother I love and respect. I am 32 (recently) and have had the experience of having my first child seven months ago. I found it very difficult going through this and not having my mother there for me. And the worst of it is I could see her trying so hard. Now having my daughter it makes me sad she'll never truely know my real mum. But it also gives me great joy to see my mum interacting with her, laughing and catching an adoring smile as communication with my mum has become so hard. Sorry to poor.

    I hope you had a great weekend away. Treasure every moment she's still the mum you love
    Alice b
     
  8. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    Thanks everyone. I did go away for the weekend and had a marvellous time.
    It seems that in my absence mum, dad and other members of the family have had a great time, trips to the local parks and tea in the palace (not Buckingham!). It's very reassuring and when i saw mum this morning she told me all about her weekend. It's good to see some of my real mum shining through occasionally. perhaps it does everyone good to have the odd break?!
    I've also signed up to have a go at the parachute jump to raise funds for the society - i must be mad, i'm even terrified of rides at ammusement parks...and i don't like flying!
     
  9. MrsP

    MrsP Registered User

    Mar 19, 2005
    115
    Glad you had a nice time and that you feel good about it. As for the parachute jump....you're braver than me!! Good luck, love Kate P.
     
  10. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Hello Kaybe
    Glad to hear you had a nice weekend. I think the hardest part when you have a young parent with alzheimers is trying to come to terms with the fact that it could be like this for a long time to come. Its also the case that sometimes its not just one parent that needs looking after in that the carer ( i.e my mother in this case) does not cope very well either and ends up getting very depressed and stressed. So while on one hand you do your best for the person with AD you also have to make sure that their carer is ok too !! not an easy job as you say when you have young child or a job or a business to run.
    Some weeks are better than others but sometimes its so sad to see the person with AD get worse or have a very bad day ! Occasionally you snap at them as you are so frutrated with them as you may have explained something ten times and it still does not register, and then you feel very guiltiy afterwards as its not their fault.
    Our Dad went missing for 18 hours some weeks ago, and it was sureal out looking for him at 4 am in the morning !! eventually someone phoned the police and they brought him back. The thing about this website is that there appears to be so many young people with AD. I guess you always think your parents are invinsible and will always be strong and "your mum" or "your Dad " and when that changes its hard to cope with. I think I brought my dad up the aisle at my wedding instead of the other way around, but if you look at the photos he has this big grin on his face like he hasnt a care in the world !!!
    Will stop rambling now, but just to let you know that if you need to talk am here to listen.
    Dawn
     
  11. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    Hi Dawn

    it's so refreshing reading your reply, it's sounds exactly like how I feel with the only difference being which parent has the Alzheimer’s.
    I thought it was very interesting reading what you said about your dad walking you up the aisle on your wedding day. Obviously my own dad was fine (to a degree!) however mum was sat at the front of the church and I so wanted her to see me, she sat with my brother who encouraged her to turn and look just at the right moment, I shall never forget the look on her face and I'm sure it will remain one of my fondest memories.
    I think you're right about the invincible thing. When they're so young you don't get a chance to see them age, it's like they've skipped a stage. One minute they're so together and ready to take the world on with you and the next you're helping them take a bath and wondering what's happened, and trying desperately to remember what they were like before the Alzheimer’s took a hold.
    Just to let you know that your offer of a friendly ear is very much appreciated, I promise to return the favour.
     
  12. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Hi kaybe,

    So sorry to read a story that mirrors mine, I'm 36 and my daughter is 5, Mum was diagnosed a year past in January.

    Fortunately since my earlier posts, the bitterness has subsided a bit.....still feel cheated that this has happened to my Mum. I've learned one thing, from the posts here and some of the very sad stories, I now cherish every minute with Mum even though there are times I get 'short' with her. She's changed but, she's still Mum.

    Your comments about seeing your wee one grow up are also something I agree with, but Mum is brilliant with my daughter. It's one of the things that Dad and I both agree keeps her going. Mum talks more to her than she does to me (and Dad), sometimes I think it's the more 'childlike' quality that Mum has now. I have resigned myself to the sad fact that Mum won't see her grow up but on the other hand the pleasure Mum gets from her now would I'm sure last a lifetime anyway.

    Keep posting here when you're down, it's a great place to vent frustration or whatever, people in the same situation know where you're coming from. Friends try to be kind, but can't really appreciate what it's like.

    Mandy
     
  13. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #13 Michelle-A, May 19, 2005
    Last edited: May 19, 2005
    Hi Kaybe,

    Like you I have been a young carer and know exactly how you feel. I'm 25 now but was about 20 when mum was diagnosed with dementia and parkinsons. Unfortunately my mum is in the late stages of this disease now - she's only 53.

    My sister and I were caring for our mum up until last year when we couldn't cope and she had to go into care. Mum's now in hospital - has been for over 3 months and the stress has finally proved too much for me and I ended up in hospital myself.

    I just wanted to say that it's a good thing you've found this site now rather than later, I only discovered it this year and feel that if I had known about this site earlier and that other people knew what I was going through, well, I think I wouldn't have felt so "alone". I'm now seeking counselling as I'm not coping very well at the moment. I think if I had known what to expect and had got advice from people on this site when mum was in the early stages, it would have explained lots of things and made a huge difference to my emotional well-being.

    All the best to you.
    Michelle x

    PS, I've been sky-diving before - it's FAB!!!!
     
  14. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Hello Michelle
    You know it amazes me to hear how many young people there are out there with AD and in your mums case parkinsons. Its so sad to hear that your life and your mums life changed forever from such an early age. I am sure you feel that in some ways you have missed out on a lot of things in those five years , but then if you were not there to look after your mum you would have felt guilty about it.
    I think you feel a bit cheated really, cheated for the fact that you lost your mum the day she was diagnosed but also cheated because life was never the same and you have to watch a person you love so much change into a completely different person,and thats what makes it so sad. I hope you get some time out to look after yourself, conselling is always a good way to get things off your chest, because friends dont always have the time to listen, especially when things are not getting better.
    Hope you manage to keep the chin up, I am sure your mum is so grateful for everything you have done for her and the time that you gave her no matter what mood you may have been in.
    Best wishes
    Dawn
     
  15. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    Michelle, we're going to look back at some stage in our lives and wonder how we coped with so much at such a young age. Keep up with the counselling and don't underestimate all that you have done, I have the greatest respect for you.
    I have to admit that this site has become a bit of a life line to me. Sometimes just to realise you're not alone is what you need. I used to have a problem getting up early in the morning and going to work, and then I'd think of all my friends doing the same thing and in a strange way it made going to work easier. That's how this forum works for me now, before I felt very alone now I realise there's millions of us out there young and old, all caring for our loved ones in one way or another and feeling the strain.
    Whilst I am in no way doing this for any sort of reward, I'd like to think that when the day comes I have to face St Peter at the pearly gates; he's going to say “Go through, there's a drink waiting for you next to the sun lounger. Your mum will be with you once she's finished having her pedicure, by the way the tall man looking remarkably like Brad Pitt will be your personal assistant and at your beck and call!"
    By the way Michelle, I'm hoping you're right about the sky diving!!!
     
  16. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Kaybe I like your sense of humour !!! dont think your husband would be too pleased about Brad though !!! :)
     
  17. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #17 Michelle-A, May 20, 2005
    Last edited: May 23, 2005
    Yeah this site has been a great help, unfortunately for me though I feel it's come a bit too late now. Mum's advanced now and I think we've pretty much gone through each stage - not sure it could get any worse! So I guess we've just learnt about it along the way.

    When mum was first diagnosed I use to think I was the only girl in the whole world who had a young mum with AD - it just didn't make any sense to me whatsoever. It still doesn't I guess and I'm not sure I will ever really come to accept it!

    When I found this site I honestly couldn't believe that so many other young people were tragically going through the same thing! Reading other peoples posts was uncanny! It's especially sad when I hear about you talking about your own young children and them not having there grandma around - I think about that all the time. Although I'm not a mum myself, one day I hope to be and it breaks my heart to think my mum will never get to meet her future grandchildren - she always use to say she couldn't wait for me or my sister to have children. The same goes for me if I was to ever get married! Anyway, I'm going to stop going on now otherwise I'll start crying!!!

    But honestly, finding this site is a great help and I hope as time goes on and you start to experience different phases, I hope you find lots of comfort in this site and I'm sure you'll get lots of advice!

    Take care, Love Michelle.x

    PS, Sky-diving was so much fun, honestly you'll love it. When and where are you doing it?
     
  18. kaybe

    kaybe Registered User

    May 5, 2005
    19
    Surrey
    We're doing the sky dive first weekend in July somewhere in Maidstone, Kent. I'm such a light weight and normally would struggle to get on a merry-go-round. I also have a problem with heights and get dizzy climbing stairs!! What in Gods good name I was thinking of when I booked I'm still not sure.
    I really sympathise with you Michelle, I kind of understand about the grandchildren thing, I have one son and fortunately he had an amazing relationship with my mum before her illness as we lived with them for a while, he still is very close to her. However my husband and I do want more children and it upsets me that they'll never know my mum as she was.
    Life goes on for us though doesn't it, I mean there's has stopped, like living in ground hog day. I'll bet if someone told my mum 10 years ago she was going to suffer with Alzheimer’s she'd have made a point of telling me not to let it stop my life too. I love her so very much, and I'll always be here for her but who knows what the future holds for all of us. We mustn’t let this illness take over the rest of our lives, otherwise it's not just irreversible for our loved ones, but for us too, and I'll bet none of our parents would want that.
    I think you're right Dawn about my husband having a problem with Brad (first name terms now!) but If we can't be bad on Earth, SURELY we can be in Heaven!! Oh please let it be true!
     
  19. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    One of my great regrets is that Peg has forgotten the names of our 3 grand daughters,I think she has forgotten them.
    Unfortunate that they live so far away from us and we have never seen a lot of them,I wonder if we had would Peg remember more about them?
    Norman :(
     
  20. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Norman, I am sure it must distress you when Peg forgets the names of your lovely grandchildren. However I have a friend with AD, and he saw his grandchildren every day, but now says "who is that stranger in the kitchen?".
    It affects different people in different ways, and at different stages.
    Try not to let it upset you. Sending you a (HUG), Connie
     

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