1. crystal

    crystal Registered User

    Feb 6, 2006
    My husband was diagnosed with alzhiemer's in September 2005 at the age of 52. It took us 6 months to get the diagnosis, at first thinking it was a breakdown due to stress at work, had he had a stroke? had he got a brain tumour? all these things went through our minds. In November we had the diagnosis confirmed due to the end of numerous tests, CT scan, blood tests, lumbor puncture, mri scan. Our life has been turned upsidedown and I am still off work with stress and depression 6 months later totally desperate. We are both trying still to come to terms with the reality. Will the crying , anger and confusion ever stop ? so many things now make sense to me.
  2. connie

    connie Registered User

    Mar 7, 2004
    Dear Crystal, warm welcome to TP.

    Yes the crying, anger and confusion will stop, for periods, but may reappear again.
    Our Norman's saying "day by day" really has to be put in place. Slowly you will come to understand a little, and get to know where to go for help and advice outside of this forum.

    My dear Lionel summed his life up upon diagnosis with the words "Today is as good as its ever gonna get", so do try to get the best out of every situation. Thinking of you, Connie
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Crystal
    so sorry to see someone else join us in the Early Onset community, but it may be helpful for you both to know there are others in the same position, because, while it will always seem so unfair, at least we are not unique, and the people I have met so far in our situation have been such good, nice people - Connie who has beat me to a reply is one such, someone you feel better for having known.

    For the present and forseeable future, do the 'day by day' thing that helps all who are touched by dementia in any way, young or old. At first the 'yoiunger person with dementia' tag seems the worst, but you will find that dementia at any age is basically the same, some of the challenges are just worse - for a younger person, or for an older one.

    Connie has already mentioned Norman, who cares for his Peggy. Norman is a fantastic fellow, doing an unimaginably difficult job caring for Peg at home, and it matters not a jot that he is whatever age he is - we are all in it together. To me, Norman seems younger than I am as I often feel old as the hills since Jan has been taken from me.

    Try to keep a diary of some sort, it will help you keep things in perspective over time.

    Why not record the things you do together from now on using a camera?

    Both diary and camera have helped me immensely - my Jan was 50 when she started her symptoms in 1991 but it took ages to get a diagnosis. I was with her twice today in the care home [25 miles away] where she now lives, once to be with her to feed her lunch, once to take her hairdresser in as I do regularly. She is still lovely, though very compromised.

    My point being, the diagnosis is the start of a new life for you both. It will help you and your depressions [I've been up and down like a manic express elevator for the past 15 years, so I know where you are at] if you can adjust to your new situation, and learn to know and love your husband as he changes over time.

    It will still be him, no matter how the dementia tries to muck you both around.

    Do use TP to vent your feelings, but also to know you aren't alone.

    you asked
    the answer is yes. but they will also start again, then stop, etc.

    So you will both have good days, and bad days.

    Live for each day, there will still be many happy times ahead, and leave no stone unturned in finding them.

    See - I can ramble with the best of them! [rambling is positive for me at present because I'm using the heat generated by my PC to keep me warm as my heating has packed up! ;) ]
  4. May

    May Registered User

    Oct 15, 2005
    Hi Crystal
    I'm in a different position to you as it is my Mum who has dementia and my Dad is primary carer, I just whitter and worry about them both and do what I can. Every situation is different and all bring their own challenges. I can't add anything to what the good people on this board have already said, this is a truly unique community, supportive and caring. As Norman says, 'Day by day', and as Brucie said 'know you're not alone'.
    Take care
  5. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    there is always some one here for you, day and night, night and day,just call out if you need help.
    You are now part of the big TP family and you never need to feel alone again.
    Warmest wishes
  6. barker

    barker Registered User

    Jan 22, 2006

    Hello Crystal

    I am not sure how long these feelings of despair and anger do go on for. My partner is now 62 and we still have not settled to 'our lot', although the despair and anger probably is less marked now but the frustration more so, now we are in the system.

    For three years we have been going through the scenario you describe, everything except a lumbar puncture but also psychological screening x 2. We went down the depression route for the first year but as the symptoms became worse and the antidepressants had no effect, dementia came to the fore.

    However, some three years later, we still do not have a specific label, as test results prove inconclusive, with more are booked for the future. The symptoms however continue to worsen; although to the outside world he often appears normal (especially to those who didn't know him before).

    On a positive note, I have found that carer's meetings a definite benefit. I have met some really lovely people and often we discuss anything other than dementia. I have only just joined TP and I am sure I shall also find it to be a help.

    Are you getting Disability Living Allowance and Carer's Allowance yet?

    I do think that we all have to grab life by the throat from now on, and do as many things together as we can, while we can. I think the rainy day has now come and so we are splashing out on lots of holidays.

    Please keep in touch.
  7. rummy

    rummy Registered User

    Jul 15, 2005
    Hi Crystal,
    This is a group of the most beautiful, big hearted and sympathetic people you will ever meet. Being apart of TP has helped me so much and just a week ago helped me work through my depression.
    I am so sorry about your husband, that is tragic. First rule, take care of yourself so you can better take care of him.
    Come back often !
  8. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Crystal,

    I first noticed signs of dementia in my mum when she was about 56, a diagnosis came much later. It's so scarey to begin with. The thing is to live one day at a time. I would do as Brucie said, get a camera and take lots of photos of one another. Are you receiving treatment for your stress and depression? If not, then that is a priority.

    Mum's now 73; she moved into a Nursing Home just after Christmas. There have been lots of good times; maybe not the sort of good times that we would have chosen, but good all the same.

    The grieving comes in waves; don't be frightened by it. The wave passes, there's a period of calm, then another one takes you off your feet. Sometimes you manage to get back on your feet yourself, other times you have to shout so other people know that you need help. People posting on here all know what it is like to flounder about in the water, they all have acute hearing, and listen out for the shouts.

    So, I'm pleased to meet you Crystal, wish it wasn't under these circumstances, but life throws all sorts of ---- at us; I'm pleased to have met Rummy and Richard and Sheila and Zan and Nat and Norman and Connie (and all you others!) though I wish that none of us had to post on here. We are all privileged people though; we all have someone in our lives that we love dearly; I think we are privileged to know one another, there is so much love, care and compassion on this site, and a wealth of experience. So, pleased you are joining us Crystal, when you feel you can, post again, we want to know how you are doing. It's so good to share those moments when you are enjoying paddling in the surf and jumping the waves, and to know that there is a place where people are ready to help pluck you from the waves. (Hey, I like this analogy!)

    Take care. Thinking of you.

  9. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex
    Under The Waves

    Dear Amy

    I loved your post and you do wax lyrical, Wish i were as clever with words!!! :cool:

  10. connie

    connie Registered User

    Mar 7, 2004
    Loved the bit about paddling.........think I managed to dip a toe in the sea this week, water is still cold but..............hopeful of things to come. Will post more in Lionels diary on Friday. Love to all, you are doing a grand job. Connie
  11. isabel

    isabel Registered User

    Apr 7, 2005
    hi crystal


    My husband was also diagnosed in 2005 (May) at the age of 49 we are still coming to terms with it and when I think I have got over the crying stage it seems to re-appear. I can truly relate to what you are going through. We have a young family our youngest child is 7 years of age and it is very difficult for us all to adjust to the changes necessary to cope with each day. The one thing that I have learned to do is take it one day at a time as everyone keeps telling you.

  12. anna76

    anna76 Registered User

    Jan 30, 2006
    You're amazing!

    Hi everyone,

    I've been reading your posts, and I'm there with all of you. I think you're all amazing people! You're an inspiration to me, and just reading about your daily battles and ongoing struggles makes me more and more determined to carry on in my own struggle to help my local carers and YPWD to a better quality of life and of services.
    I just hope I can do you justice. :eek:

    Look after yourselves, please, and take care.

    Anna x ;)
  13. chip

    chip Registered User

    Jul 19, 2005

    my husband has frontal lobe dementia he is now 52 but they think he has had it since in his late 40's. I have been told that in my area there is not a lot of help for the younger ones. I have been asked to think about long term care but i can't go ahead with this as i will have no money coming in due to the fact i can not work and they will take half his pension to pay for the care.
    I have just had my first respit and found that i cope ok without him. I just got him back yesterday and found him to be worse, he is also saying that he will never go back there. They did offer me day care at the weekends but he says he will never go back there. As it is the front of his brain that is affected he still can to some extent remember. It is the only place available for respit and only has 2 beds availabile has anyone any ideas
  14. wendy43uk

    wendy43uk Registered User

    Dec 22, 2005
    Hi hope to be able to help uou a little what uou must rember is the only way uou will cope is to have day care and some restbite this time is foe uou if hubby wont go than uou will have to tell him he has to ore u cant look after him at home this should make him try again at day care after he feels ok about going to day care he ma try rest bite again hope this helps
  15. chip

    chip Registered User

    Jul 19, 2005

    It wasn't the right place for him. I got the impression that he was down graded. When i got him home he had incontinence pants on and his clothes were all crushed. The problem is that he isn't incontinent, his underwear hadn't been used ( i no this as it was all new) I have had him back for 3days with no problems he in fact goes on his own to the toilet. He also knew where the toilet was in the house after getting back home he even noticed that the living room had been changed. I encorage him to do as much as he can for himself but this seems to have been stopped when he went in for respit. He likes helping. Oh he may take a while getting his clothes right but he gets there in the end and feels happy when he gets it right. or does something for himself. I was told my the home that he needs everything done for him. He says that it was awful. I have also been told by the support workers that it wasn't the place for him. He was very sporty and that is still there. As the doors were locked there also he felt locked up i don't need to lock doors in the house. He got tested there i got told he scored 2/28 yet when i ask him questions he answers some of them, ok not a lot but it is more than 2 When i asked him what had happened he told me that i didn't like them so i didn't speak to them. At home he gets taken out by the early onset team to play snooker, ten pin bowling, kick a football, walks etc and he really enjoys it. This is what he is used to and not locked up. He did retaliate and they ended up putting a order over him.Yet nobody else has had this problem. This place is the only place for respit in my area for the younger ones. Yet in every ones mind this was not the right place. What do you all think
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    My view only...

    staff at respite/care homes tend to use the pads regardless of the need of the patient because that means they don't have to watch them so closely. Unfortunately it escalates their move to incontinence, and that is a one way road.

    Also, staff don't find time to give close time to individuals unless 1-to-1 care is provided. Thus they can't find time to move at the pace of the slowest, to give them time to do the things they can still do... so they lose the ability there as well.

    Finally, it is rare that we find that younger people with dementia are properly catered for.

    To encapsulate - that's why so many of us care for them at home until we drop, or they move past the point where we can manage. We can cater best for their individual needs, no-one else can.

    There is, however, a time when we do have to hand over, and we are probably the best judges of when that is.
  17. crystal

    crystal Registered User

    Feb 6, 2006

    Hi Isabel,
    So sorry to hear of your husband, it takes a lot of believing at such a young age. I have been off work myself for 6 months after the diagnosis and at the moment I am battling with the desision of can i go back part time or finish alltogether. I am so frightenened of going back to work and leaving my husband, some days he is fine and another he struggles but willnot admit it. We have 2 children a lot older than yours 25 and 28, they are finding it hard to accept and is just as disstressing for them. Keep your chin up will think of you
  18. connie

    connie Registered User

    Mar 7, 2004
    Once again Bruce you have hit the nail on the head.

    You have summed up just what happens in a lot of care homes, especial when not designed for YPWD.

    So sorry that you had to go down the road before us, but you really do make a difference to how we see things. Thinking of you, Connie
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I remember the old cowboy films, when they are going along a track through the desert and come upon a bleached skull of an animal that has gone [in all ways] before them.

    Sometimes I feel pretty bleached myself!

    All part of the territory.
  20. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    Another New Member Seeking Advice

    Dear Members,

    I'm a young FULL TIME carer (38) to my husband (45) who has MID (Multi Infarct Dementia).
    MID newly diagnosed, after all the tests you can think of.... LP, MRIs ++, CATs++, TOE !, ECGs, Dopplers, Angio +++ many others.

    I'm new to chat rooms so forgive me if I get things 'wrong'.

    Had his first stroke over 2 years ago, and had to relearn how to talk and walk etc.. End of last year had 'multiple' strokes in quick sucession, and the Docs started investigating other 'things'.
    Has Epilepsy too.....and occasionally needs a rapid 999 call when he goes into Status Epilepticus....

    Mobility remains very poor....VERY POOR.....
    Cognition ....VERY POOR....

    Had a recent chat with the Prof/Consultant and have been told that things are more than likely to get much worse... MUCH WORSE...
    Which they are ....noticably already.

    I have no family help AT ALL. (They all live within 15 miles max !!).
    His family refuse to call (either in person...and on the phone !! AT ALL)
    HE has a HUGE family too.
    (My family live 100's of miles away....as far South as you can go !!
    They all feel helpless... but offer a friendly voice on the phone.....)

    Daily I get accused of 'stealing'.... 'selling things'...'hiding money/property'...'hiding EVERYTHING !!, 'moving things'.
    I get accused of abuse and neglect daily.....
    He can't always remember eating, taking medication, showering etc etc.
    Daily he says that he is going to report me 'to the authorities' for negligence....
    I get called useless, dumb, stupid, worthless +++ every day.

    We keep diarys, calendars, notes++++ all over the house........everything and anything you can think of.
    He 'signs' for his medication.... writing down what he was doing at the time etc..
    BUT...then I get accused of 'signing for him'.

    Dementia rapidly getting worse....and today I'm having a really bad day.

    Finally after MONTHS of asking, I got a carers assesment done.
    We now have 1 hours help every week day morning...... not nearly enough...but greatly appreciated.

    I really need a break... BUT we have no money.
    Local Council has no money left in budget either.

    Living off savings (what is left of them), and DLA.

    Living for the occasional GOOD moments...hours....

    Any advice out there ?????


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