1. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales

    I am sitting here at work, it is 7.20am and I am wondering if I should be here at all!! David attended the Memory clinic yesterday and as I thought he has dropped another two points. In the great scheme of things his score is very good compared to some (22 out of 30) but I have been aware over the last six months that he had taken a slight drop.

    I feel so sad today and quite emotional in that I cannot get my head around whether I should be here trying to keep a roof over our heads or on benefits so I can spend more time with David. He is such a wonderful husband and always has been. He has always been there for me when I had problems and I feel as though I desert him everyday.

    The CPN has given us some dates when they run special days out for people with early onset (David is only 57) and I will encourage David to take advantage of this.
    We have also got his name down for a Day Centre for younger folks.

    Sorry for feeling so sorry for myself and I know we are only just starting off on the long journey of AD, but I wondered if there are others who feel the same?

  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Katie

    it is such a difficult call isn't it?

    I continued to work, while keeping a close eye on Jan and how she was managing. Slowly as she became more affected, I began to do some of my work from home - I was lucky in my type of job, which was conducted frequently through Internet access. Eventually I worked totally from home when Jan needed 24 hour care. Well, I did precious little of my paid work!

    What to do depends on personal circumstance. Also I found Jan wanted to feel she was not a complete invalid and my being around all the time making sure she was ok would have made her worried. As the old saying goes "I married you for life, not for lunch!"

    But the moments in the early stages are precious. They can also be very difficult as our loved one is struggling to come to terms with their situation.

    Only you know what is in your heart and what is possible. You need to maintain a life for yourself as well, but that tends to go on backburner at this stage.

    I'd be keeping on at work, but closely watching things at present. Speak to him about it if that is possible.

    Very best wishes
  3. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales
    Thanks Bruce. I will try and keep this in mind.


    JANICE Registered User

    Jun 28, 2005
    Hi Katie,

    When I read your letter it was as if I had written it myself!! As you know I am a medical secretary like you and still working full time while Keith is at home. I know exactly how you feel. I feel so guilty going off in the morning as sometimes he looks so lonely and sad and says things like "I don't know what to do today, the time goes so slowly when I'm on my own". Like you with David, I can see Keith gradually deteriorating but I think for my own sanity at the moment I need to keep on working while he is still capable of doing things for himself. It is a very difficult decision to make but it just seems to me at the moment at my age (57) that it is such a long stretch in front on me and to give up work now seems too early. I feel guilty when I say and think this but I look forward to coming to work and having people to talk to. I hope that we will know when the time to give up work comes but I have to be honest and say in a way I am dreading it.

  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Difficult questions

    Katie, although I am not a spouse, I read your post with such sadness and wish i could help. Dad was 55 when diagnosed and now almost 61. It hurts so much when you see them losing what they had and I guess the scores just really bring it home to you.

    Its wonderful that you had such a loving relationship with your husband, although that may make it even harder on your poor dear heart. As your husband loved you so much always remember that by looking after yourself you would be making him happy too. Also like the emergency sheet in the airplane says, the adult must put on the oxygen mask first so that they can they take care of the child's needs, so too you need to look after yourself so that you can be the best you can be for your husband.

    There's a reason you can't get your head around this question, it is nearly impossible to work out. You need to be able to look after yourself in the future, you may need to save leave for when you really need the breaks in the future. If it were me I'd probably quit my job (if my husband didn't object) to be with him, but I'd have to have some plan as to how I was going to re-enter the workforce at a later date, you don't want to make yourself redundant forever. I don't know what kind of 'benefits' are available where you are, so again am not much help. One thing I will say that is in Australia the richer you are when this disease strikes the more money you will lose over time. If Dad had of divorced Mum as soon as he got the diagnosis they would have saved money, their combined assets means that they have to pay through the nose for care, whereas he would have lower fees if he had half the assets and Mum would have had her share left untouched. Just something to think about, not divorcing, but how it is possible to work your butt off and lose the lot or not work at all and stay at the same level. We don't mind about paying for his care but it is a worry when you know your mother could live another 40years and he worked so that they would have money for both of their retirements.

    My thoughts are with you,
  6. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    I was made redundant at a time when my husband's VaD was starting to kick in, and desperately missed the mental stimulation of work. Thinking back, I think I also resented the fact that I was hurting a lot - the whole work thing was very horrible indeed, and got to threats of legal action for constructive dismissal - yet he was not remotely supportive or even interested, which I now realise was just a symptom of his condition, but at the time was very upset about. I then searched fruitlesslessly for another job, but was constantly turned down on grounds of being over qualified, too old etc, and again could not turn to him for support.

    If you enjoy your work, I'd suggest you try to keep with it - or might you be able to renegotiate and go part time? (Mind you.7.20 sounds a horribly early start!).
    We all need some 'me' time, which does not have to be work but could be.

    On a brighter note, I have managed to find freelance work, which I do from home but gets me out and about, meeting (sometimes) interesting people, and this helps keep my grey matter ticking over.

    Your husband's score is pretty good - could he do something like half a day at a charity shop or something, so he too has some outside interest that he can tell you about when he gets home? My husband won't do anything now without me going along as well,which I don't think is too clever. He flatly refused to go to a day centre after two sessions, saying the room was very small and the people were crazy, but he gets visits every week from two Alzheimer Support 'befrienders' who come and chat, which gives him stimulation, and they don't mind hearing the same old anecdotes week after week. One of them is now helping him clear out the Steptoe's Yard that is our garden shed, which is brilliant.

    Good luck, whatever you decide to do.
  7. 1234

    1234 Registered User

    Sep 21, 2005
    to work or not to that is the question

    hello to you all, We all seem in avery similar situation, except that my self and husband run a graphic business together.have done for 30 years now, my husband has AD he is 55 & very fit and still very dishy ( i still fancy the pants off him)but he has deteriated alot recently, dvla have topped him driving his precious subaru, which broke his heart, he hates my little toyota. but workmis becoming very difficult to say the least,Iwont to keep him involved , to do nothing would be terrible for him,but he really cannot handle the stress of deadlines now .My son has become a partner recently which as eased the load a hell of a lot, but my question is should i have closed the business ( which i really love) to concentrate on my husband, on bad days i think i should then we will have a productive morning and he smiles like he used to and ithink ihave made the correct decision, but only time will tell. where you just as shocked as i when this horrible disease struck ,or did you see it coming for sometime. My husband is a mountaineer, serious stuff , still climbing and i said i would not try to stop him ,but it does terrify me
    take care and please send messages if you find the time . Tp has made my life more bearable, just to know you are not alone with all this is a great comfort
    bye for now Pam
  8. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales
    Hello 1234

    Yes it sounds like we are all in the same boat and all about the same age too. David started with memory problems back in 1996 when he was only 48 years old. There are others I talk to on TP who are a similar age too.

    I think what upset me was at the clinic yesterday they said he had dropped 5 points but then tried a different question and he recuperated 3 points. I was devasted at a 5 point loss!

    Tomorrow I will probably feel better and wonder whatever was the matter with me.

    Thanks 1234 and thanks also to everyone else who has replied.

  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    The more we can highlight all the issues that are present for those like us who have been dented by Early Onset dementia, the better.

    In reality, things that seem particularly hard for our group probably aren't just felt by this group, and are felt by the older age groups too. It just seems to us to be more desperate because of the young age.

    By virtue of the medium we are using, there may well be more younger people here than older ones, but that is probably easily challenged by fantastic people such as Norman.

    Main thing is that we understand where we are all coming from, as an Early Onset group.

    It was the thing that left me feeling most alone when Jan was starting downhill, the fact that there was no other couple we knew of that were like us. At least that has been nailed now by TP!
  10. suzannapat

    suzannapat Registered User

    Nov 29, 2003
    giving up work

    Hi Katie,
    Again we are in a very similar boat. My husband first showed symptoms in 1997 at age 51. As his mother had suffered the same fate, I buried my head in the sand until in 2000 he was too badly affected to continue in his position of Senior Teacher at a local comprehensive school. He was diagnosed in March 2001 and I believe his mmse score was something like 15. He quickly lost the answers to those particular questions and so they didn't bother to do it anymore.
    I cut my working hours to 12 per week and as my pay is so abysmal I can claim carers allowance to top it up a bit. We have continued to enjoy life together but activities have become less and more difficult year by year.
    Recently he took a turn for the worse and has been taken off aricept. The decline in 4 weeks is so shocking and I have heard today that he can no longer attend the centre where he usually goes on Wed and Fri. I now have the dilemma of giving up my tiny lifeline to the outside world or trying to find a place that will take him. This will only be for a few months as the consultant assures me I won't last more than a few months now and he is unlikely to live for more than another year.
    After 32 years of a very happy marriage and five official years of caring, I can only say that you must give it your best shot while you can. We only know that we are alive today and it is no good worrying too much about how you will survive tomorrow. I am now looking at homes with trepidation but a clear conscience knowing that I have done all I possibly can for my husband. The worst thing as that there is no specialist provision in the south west and so at age 59 he will be with 80 and 90 year olds. Sue
  11. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003

    Dear all,
    How well I recognise the dilemma!
    Every day brings its own wave of guilt for going off to work, and I keep re-assessing the situation in the knowledge that the moment will probably come when I feel that I have to stay at home with my husband.
    He is safe in the house (and garden while the weather was good enough), and we now have a wonderful carer to check on him an hour after I leave in the morning, and again at lunchtime. Whenever possible, our daughter pops in during the day, and once a week he attends a day centre.
    A year ago, I would never have thought I'd be prepared to let a carer into our lives. I looked after our children when they were little, and I expected to do the same for my husband. - But this is so different, so crushing, so isolating and stressful, not so much because of the 'caring', but because of the frustration of watching my intelligent, independent, proud husband reduced to a scared and sometimes scarey man.
    I do not want time to go off on outings or a holiday, I want to spend as much time as possible with my husband. But I do enjoy my job, and I will probably try and carry on working (perhaps reducing my hours in months ahead) as long as possible, as this is 'me time', time to live at a faster pace, time to escape (not a feeling I am very proud of!!), and I am also hanging on to a part of my life which hopefully has a 'future': The decline in my husband's condition since the recent withdrawal of Aricept is scary, and I am realistic enough to know that his deterioration is likely to accelerate. I am fairly independent, but I am scared stiff of what lies ahead, and 'work' provides the normality I need to keep me going from 4pm to 8am and throughout the weekend. It is a compromise, at least for the time being.
  12. connie

    connie Registered User

    Mar 7, 2004
    At least I was at home when Lionel was diagnosed at 59 - he had to stop work as commuting into London was becoming too stressful.
    We were determined that AD would not affect our lives too much, and for 18 months carried on as usual (me making allowances).
    When I look back over the past four years the decline frightens me, but still we do as much as we can.
    What else can we do? Stay strong, Connie
  13. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales
    thank you

    Hello everyone

    Well you have all given me plenty to think about and like Norman says "one day at a time".

    I am such an organised person and try and plan/organise my life, but this illness just doesn't want to play and be organised! I have had a long chat/chats with David and he has agreed to attend a group of young folks from his Memory Clinic, sounds very much like a gentleman's group where they go out for the day for a walk/pub lunch etc. Hopefully, he won't change his mind at the last minute. I have also asked the Alzheimer's society to help find a befriender for him. Hopefully, when I have these things in place it will take away some of my guilt at leaving him. I do love my job at the hospital and everyone is so supportive.

    Many thanks for all your replies. I will try and do my best to find a solution and act on it.

    I do feel for all of us.

    God bless.

  14. nicki333

    nicki333 Registered User

    Oct 8, 2005
    West Mids
    Hi Katie

    Hello, i have only just registered on this forum and your message was the first one i stumbled across. So sorry to hear about your husband. I am in a similar situation with my dad. He is 59 and I am 29, i have been caring for him for over 2 years now and find the whole situation exhausting. I was interested to hear about a memory clionic as i have never heard of this before. My dad has been diagnosed with Fronto-Temporal Lobe dementia, he has just had an MRI scan which i had to wait 18 months for!
    He lives alone and i am getting phone calls from the neighbours about him constantly asking the same questions and wandering up and down the road.
    I have just put his house up for sale as i want to move him closer to where i live in hope that this will give him more comfort and me less stress!
    Social Services have suggested getting his name down for a residential home, which i have done but i feel so guilty as he is so young and may not understand why he is there.
    Not sure which area you live in but what have your experiences been like and what services have they offered you to help your situation?
    Be great to hear from another person in a similar situation, i look forward to hearing from you, Nicki x
  15. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales
    Hi Nicki

    Thank you for your message. Hope you find TP as helpful as I have in the few months since I joined. I have made some really super friends here.

    We live in the Nottingham region. David was referred to the Memory Clinic via his GP because our GP knew of a Psychiatrist doing research in early onset dementia. Even when David was referred I wasn't sure whether we were heading down the right path. David started with faints and all the common things like constantly checking over and over again whether he had his lap top/keys/credit cards on him. The Psychiatrist spent a couple of hours with David and did various memory tests on him, and it was then we were given the diagnosis of AD. She immediately started David on Reminyl and according to the clinic this week it is this medication which is keeping him as good as he is now. Her comment was that his score would probably be a lot lower than it is if he were not on medication. This is why we must not let NICE take this medication away from us. Is your dad on any medication Nicki?

    We have not accessed any "proper" services yet. David has a community psychiatrist nurse at the clinic and a social worker who has put David's name down on a waiting list for a Day Centre placement. When that will be we are not sure as it is on a "needs must" basis. The memory clinic have a group called "outgoing" which apparently takes a small group of chaps like David out for the day once a month. I really am hoping David will like it next month.

    David is always adament when you talk to him that he is alright on his own, he has his chores to do, and I know he tends to take several naps during the day. He has had bronchiectasis from birth and gets regular chest infections/pneumonia at the drop of a hat, and we always joked that his chest would finish him off never thinking it would probably be this awful disease called AD.

    I hope you find somewhere suitable for your dad. I don't know what I would do without my mum and dad, they really are little stars to me and David.

    Keep strong. We all have down days and feel exhausted. Lovely to hear from a new comer. Keep posting please. On a funny note we have just spent one and a half hours putting up a posting board in my little office so that David can write on tel numbers and pin notes etc. In the past if would have taken David a couple of minutes! Having secured the screws into the board I then turned to David and said how long are your nails, meaning the ones to go into the wall, instead he put down his hammer and pointed both his hands towards me. Well I burst into laughter something I haven't done this week, but David didnt twig for a while which nails I meant. In fact I am still tittering now and will every time I look at the notice board!!

    Bye for now - Katiex
  16. 1234

    1234 Registered User

    Sep 21, 2005
    length of nails

    hello katie this made me smile too come across similar situaions on a daily basis, and have found laughter the best way of handling this for my husband & I or ithink iwould scream with frustration but we just look at each other & burst in to laughter it seems to defuse the situation
    enjoy your notice board ( hope it does not fall down ) Pam
  17. nicki333

    nicki333 Registered User

    Oct 8, 2005
    West Mids
    hello katie

    Great to hear from you! The hospital has recently prescribed my dad Seroquel, he has been taking it now for 3 weeks and i'm not sure if it is helping him or not. It is supposed to reduce his anxiety but i have just called him and he has asked me the same question 10 times. My dad had some lodgers living with him who turned out to be unsavoury characters, we got rid of them but my dad constantly asks "they're not coming back are they?" it is so frustrating because they have been gone for 18 months!

    How did your husband take the news about his diagnosis? because my dad just will not accept that there is anything wrong with him. I explain it to him and within a few seconds he has forgotten. We have an appointment with his GP on Tuesday to get the results of his MRI scan, i'm really not sure how he is going to take the results. He can sometimes become quite angry about it. I'll let you know how i get on.

    Cheers, Nicki x
  18. katieberesford

    katieberesford Registered User

    May 5, 2005
    south wales
    hi Nicki

    Good to hear from you again Nicki. :)

    David and I both took the diagnosis in a very strange way really. It had been such a long time coming we were absolutely desperate to have a label! Our family all knew something terrible was wrong because he crashed his car twice on the M1 motorway obviously because he had fainted at the wheel. Fortunately both times David survived and I don't know how but no one else was hurt either. David both times never crashed into another car, can you believe it!! Rush hour on the M1 motorway :eek:

    I think at first we thought David might have a brain tumour or something similar, but his forgetfulness was becoming more and more apparent as time went on.

    Its all history now and we have to make the most of our time together however hard it is going to be for us.

    I hope all goes well when you visit the doctor with your dad and remember he could be started on some medication that will really help him. I will think about you this week.

    Hope all goes well for you. Be strong. How did your dad react to putting his house up for sale? Does he realise that he might be moving?

    Keep posting Nicki and take care.

  19. nicki333

    nicki333 Registered User

    Oct 8, 2005
    West Mids
    Hello again

    Hi Katie, We get the results tomorrow! i am looking forward to making some progress but i'm not sure how dad's gonna take it. He knows he is going to the doctors but he keeps saying "It's going to be alright isn't it? there isn't anything wrong with me is there?" So it could be a struggle, he may accept what the doctor says but then he may forget it. It is obvious to me and everyone around dad that his behiour is very strange at times but he can't understand our concerns.

    About the move, dad is over the moon and can't wait to move. In fact he keeps asking me how long it will take to move. He doesn't seem to realise that it could take months!

    I want to move him nearer to me but i don't know if i am doing the right thing or not. At the moment he lives in a village so he is safe but feels very isolated as there is nothing to do. If he lives near me i can pop in more often but i am worried about what he get up to whilst i am at work, going into shops, crossing the road etc. I just don't think i can leave him where he is as his neighbours have had enough of his behaviour. I wish someone had all the answers!

    I'll let you know how it goes.

    All the best, nicki x
  20. wulie

    wulie Registered User

    May 16, 2006
    Your comments please.

    Hi to everyone,
    I have just signed up to this forum and would be grateful for your views on the types of services that you and your partner may need.
    I am currently a local lead in reseaching and planning for mental health services for younger people, establishing new ideas to provide support, both to the individuals and their families.
    These services I am interested in seeking your opinion are around activities and practical social interaction, as you know best of all as caring for anyone 24/7 can be completely challenging.

    We currently run a session for men as a practical DIY, have plans to start an allotment project in the community in the near future. The Alzheimers Society run a local support/ forum session monthly within a local health setting.
    Your comments would be appreciated and valued.
    Kind Regards


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