What a difference a year makes

Discussion in 'Younger people with dementia and their carers' started by Westie, Sep 24, 2007.

  1. Westie

    Westie Registered User

    Today is exactly one year since Peter's diagnosis with FTD. At that time, his behaviour was considered increasingly strange and his concentration was severely reduced. Other than that, the diagnosis came out of the blue and wasn't quite believable.

    Earlier today I had a 6 month review with his key worker at the day centre he attends one day a week. We talked at length about all aspects of his behaviour and abilities and it is so, so obvious to me what a huge decline there has been in just 12 months.

    He is now verbally - and occassionaly physically - aggressive. He doesn't interact with anybody, can't hold a conversation, doesn't watch TV, read a book or do anything to entertain himself. He has no interest in us as a family, ignores the children, but demands attention like a child. He paces all day and goes out walking for miles every evening until collapsing into bed.

    His medications have been altered many times so i feel as if he is just a guinea pig being told to "try this one for a few weeks" or "lets see how this helps". I agreed at todays review that Peter really needs re assessing. The care worker thinks he is a ticking bomb waiting to explode and I agree with that. People would probably take notice then!! She is going to talk to our CPN on my behalf to stress just how difficult he is to live with now. All this because she had time to sit with me for 2 hours and let ME talk about how it is in reality. There is talk of possibly sectioning him if he won't agree willingly to re assessment.

    I just feel so down today and don't know how we've got to this state in such a short time.

    On top of all this, I'm trying to look at and choose a secondary school for my daughter. Such an important time in her life and absolutely no interest at all from her Dad.

    No responses needed - I just needed to get this off my chest to someone and I know you will all understand. Got to put on my 'cheerful' face now as Peter due back from Day Centre in half hour. I really wish he was staying there for a week.

  2. Kate P

    Kate P Registered User

    Jul 6, 2007
    Hi Mary Ann,

    I'm so sorry you're having a difficult time of it.

    It is so sad that you're making important decisions for your daughter alone and I truly feel for you.

    In terms of how quickly Peter has deterioated we have found the same with mum. Mum has just been diagnosed though she has been ill for at least four years. Mum has gone down hill so quickly in the last nine months - she can no longer speak (occasional words but she doesn't necessarily understand what they mean), she has no concept of money and she too has become significantly more aggressive. Luckily for us she's only a small woman so it's easier for us to manage but I know that if she becomes aggressive around our children (toddlers) I'll have to stop looking after her and then I don't know how dad will manage.

    From the little investigation I've done and from people I've spoken to it does seem to be the way of it with FTD.

    Can I ask what medications Peter is taking? Mum was originally given mild anti-depressants to calm her aggression but it's having no effect anymore. Dad has asked the GP to increase the dosage to see if that has any effect but that's all the medication we've been offered.

    Our consultant who made the diagnosis just said there was no treatment and that was that.
  3. Westie

    Westie Registered User

    Thanks for your reply, Kate. Sorry you're having a hard time with your Mum.

    I'm amazed that your Mum's consultant hasn't suggested anything, but I suppose they each have their own ideas of managing the disease. Peter hasn't seen his GP since the original referral over a year ago and all our contact is through the consultant for old age psychiatry (even though Peter is only 52) and his mental health team. My main point of contact is the CPN.

    Peter was put on Aricept for 6 months just in case it helped. It didn't.

    He was then tried on Memantine (Ebixa) to see if that helped. That seemed to make him calmer so he is still taking that once a day, albeit at a reduced level.

    He has Zopiclone at night which is to help him maintain sleep. It doesn't 'knock him out' as such but is designed to calm the brain activity and so stop him waking several times during the night. This seems to be quite effective and most nights he will sleep through now.

    He also takes Haloperidol to calm his agitation. This doesn't seem to have any effect despite being increased, and the plan is to stop this gradually.

    Last week he was started on Sodium Valproate, initially once a day and now increased to twice a day. This is being tried as a mood stabiliser. I haven't noticed any change in him at all so not sure if this will be continued.

    As you can see, he is taking a whole cocktail of drugs and I'm really not sure what is working and what isn't. Nothing seems to control his moods/agitation/restlessness which gets increasingly worse as the day progresses.

    What medication is your Mum taking?

  4. j.j

    j.j Registered User

    Jan 8, 2007
    dear westie
    our mam has also had a cocktail of drugs over the last six months to the stage that we don,t know what is mam and what is the drugs, temazapan to sleep, olanzapine risperidone lorezapan and a one beginning with ch? She is now also on zoplcain to sleep and sodium valproate which is bieng increased weekly for agitation. I am all for using some drugs to help but we have found we have had to speak up loudly when some of these drugs have been far from beneficial.
    take care j.j
  5. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Soduim Valpoate ???

    Coming across the thread whereby people have been prescribes Soduim Valproate I am rather concerned because I suffered with petit-mal a form of Epilepsy and I have been on this drug for many years. If you can do any research what not to take with this drug, side effect, I cannot understand why Doctors are prescribing this particular drug. I do not want to worry anyone but I just felt that being on the drug myself for 21 years there are so many drugs that cannot be given with this drug. Christine
  6. louise@weinprop

    louise@weinprop Registered User

    May 12, 2005

    Hi Mary Ann

    Just a suggestion but my husband who is 61 years has been on Aricept for 2 years and eventually due to the mood swings and frustration his neurologist prescribed Fluoxetine (which is the generic of Prozac) and the change was unbelievable, he is no longer so frustrated over his inability to do most daily mundane tasks and he is now so even tempered that sometimes I think I should also be taking the medication.
    Now when he can't put his clothes on properly we laugh about it as opposed to me crying and him flinging the clothes across the room.
    Maybe your Doctor can try him on this drug, it can do no harm but could make for a more pleasant home atmosphere.
    Kind regards

  7. bel

    bel Registered User

    Apr 26, 2006
    what a difference a tear makes

    bob has fld and i have found this last year a big decline
    so i feel for you big time
    i take fluoxetine and it helps me relax a touch i dont know whether it might help peter --need to ask
    you sound so brave put on your cheerful head like me
    if you did not make a daft joke of things we would go mad
    sending huggs
    bel x
  8. susie

    susie Registered User

    Nov 30, 2003
    You made my day when you said you were on fluoxetine. My husband has had FLD for 4 years now and this year has seen a big downturn in his behaviour this year. He acts like a 5 year old and wants to be on his own most of the time in total silence. Any change to this brings on a childish tantrum. Before fluoxetine, I used to fly off the handle and the situation escalated with violence and divorce threatened by him! I always felt thet taking tablets was admiting defeat but now we laugh about his frustrations and I find I actually believe myself when I think "He can't help it- it's his illness".
    I know it isn't the answer for everyone but if it makes the last years we have together happier and the illness easier to manage so be it.
  9. Kate P

    Kate P Registered User

    Jul 6, 2007
    Hi Mary Anne,

    Sorry for the delay in my replying - pulled a muscle in my back so not been able to get to my computer - argh!!!:eek:

    Anyway, mum is just on bog standard anti depressants and only a mild dose at that - dad doesn't want her to have anything that would help her sleep as she gets up in the night to use the toilet a lot and I think he's worried about her having an accident if she's sedated. Personally I think it would be worth the risk as he's exhausted from being up with her all night - she seems to think if she gets up for the loo she should have a shower as well - unless she already is having accidents and that's why she's showering?

    Mum too is seeing an old age consultant - disturbingly she seems to know nothing at all about FTD - said she didn't think mum had it as speech would not normally be affected.:eek:

    I'd really like us to find another consultant but dad thinks they'll all be the same as there is only old age consultants in our area.

    It's a pickle all right - I've even had to refer mum and dad to social services for an assessment as neither our GP or the consultant "felt" it was for them to do.
  10. Westie

    Westie Registered User

    Admitted to assessment unit

    Things have changed rapidly for Peter this week because of his increasingly agitated state.

    The Day Centre, Transport services, Activity Group and Crossroads all withdrew their services on Wednesday saying he was too much of a risk to handle. When London Ambulance services were bringing his home this week, Peter kept getting out of the ambulance every time it stopped - even at red traffic lights. He grabbed the steering wheel of the carer from Crossroads as he disagreed with the route she was taking.

    That left me with no support or day care at all. The consultant had written another prescription to increase his medication and left it for me to collect with message to 'try this for 2 weeks and see if helps'.

    I rang my CPN in tears. She had just heard from the day centre and crossroads and had decided Peter needed admitting. She told me to hold on a bit longer and she would get back to me. She rang back half hour later and spoke to Peter who was in. She actually asked him if he would go to hospital. His reaction was to explode in anger and stormed out of the house. She apologised to me for upsetting him!!!! She then started talking about sectioning him which I found very frightening. By then it was 5pm so we agreed to leave things until the morning. Peter came home and didn't mention it at all. I didn't talk about it either.

    Yesterday CPN arrived at 9am. She had overuled a lot of her team and secured Peter a bed. Said they could section him if absolutely necessary but would be so much better all round if he went willingly. So we all sat round drinking coffee trying to cajole and persuade Peter to go. He was much calmer (always is in the mornings) and agreed. Success.

    Packed some things and CPN phoned hospital to say on our way. No way , they said. Not until after 2pm. By now Peter had changed his mind and said he would go 'when he needed to, but not today'.

    More conversations, I got a close friend of Peter's round and he agreed again. He sat in back of car with the CPN and child locks turned on. I felt awful but drove. He stared at the hospital entrance but went in. My darling husband back in that dreadful place and my heart breaking. I will never forget the look he gave me and he refused to speak to me again that afternoon.

    I don't know what happens now. He will be there for a few weeks (he thinks 2 days) and the plan is to stop all medications to find the real Peter. Then try and see if they can make him calm and peaceful so that he can accept being with others and have some quality of life. No one knows if this is possible and only time will tell.

    My CPN stayed with me the whole day, booked Peter in to the hospital herself and helped me unpack his things in his room. She was such a support and I wouldn't have coped without her.

    Today I feel numb and empty. My head aches but that is nothing compared to the pain I saw in Peter's eyes.

    I am frightened I have done the wrong thing for him, but felt I had no choice.

    I'll let you know what happens next.

  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary Ann.

    What a traumatic time you have had, but I can`t see how you could have done it any other way.

    At least he didn`t have to be sectioned following the CPN`s phone call blunder, and she made up for that by giving you the right support when you needed it.

    Now all you can do is wait and see. It will be a very difficult time for you and I hope you have the strength to cope.

    Please let us know how Peter gets on. Fingers crossed they will find a way to help him.

    Love xx
  12. connie

    connie Registered User

    Mar 7, 2004
    DearMary Ann, what a nightmare situation to find yourselves in. I do so feel for you both.
    Mary Ann, when you have no choice, you have done absolutely the right thing.
    You cannot continue to care 24/7 when sevices are withdrawn.

    I am glad that you had support from your CPN and from Peter's friend.

    Thinking so much of you both, love
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mary Ann, I feel so sorry for you. I know how awful it is having the person you love most in the world in hospital, but I didn't have to go through the trauma of getting him there, he was too ill to protest.

    You must be feeling devastated, and it's so hard when every time you visit, they think you've come to take them home.

    I do hope they manage to get Peter's meds sorted so that you will be able to have him home. Let us know how you get on, I'll be thinking of you.

  14. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Mary Ann,

    You are in my thoughts and prayers.

  15. Westie

    Westie Registered User

    Thank you all so much for your kind words today. They really help.

    I made a decision not to visit Peter today but my good friend, who helped so much yesterday, visited him this morning just to make sure he was ok. She said he was pleased to see her and showed her around the unit including walking 6 laps around the garden. After 15 minutes he was visibly agitated and asked her to leave.

    He didn't mention myself or the children at all but there was no talk about wanting to leave or go home.

    I feel calmer this evening and have even enjoyed cooking a meal for the 3 of us which we all ate together without interruptions and anguish. My daughter even laughed about some incidents at school today - something I realised I hadn't heard her do for some time.

    I will visit Peter tomorrow and hope he has settled a little.

    Hoping you all have peaceful evenings,

    Love M-A
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mary Ann, enjoy your evening with your family, and don't worry about tomorrow. Just stay as long as Peter is calm, then come away.

    I hope the visit goes well, let us know.

  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary Ann.

    How sad when such young children are so affected by Alzheimers. I hope your visit goes well tomorrow.

    Please let us know.

    Love xx
  18. bel

    bel Registered User

    Apr 26, 2006
    dear mary ann

    sending big big bags of love and kisses
    to you
    we are all thinking of you
    love bel xxx
  19. icare2

    icare2 Registered User

    Jun 18, 2006
    there is help there

    I can relate to all you are going through,the agitation and aggression mood swings and trying this medication and suck it and see attitude,because really everyone reacts to medication differently, Jane my wife was only 54 when diagnosed that was 7 years ago,how we have managed to keep her at home only God knows,but your situ is completly different as you have a young family at home,and my heart really goes out too you.

    Anyway when he was at home were you never offered support workers from your SOCIAL WORKER,and when you are getting a min of £200 per week from your Local Authority in help,you can apply to the INDEPENDANT LIVING FUND,for more Funding,we now get support workers coming in 7 days a week for 8 hours per day,and its all paid for,and yours should be too,as your earnings do not count on assement.

    Thankfully now Janes aggression has now gone,but the agitation is still there,and I have now weaned her off the Haloperidol,all she gets now is 20 drops EBIXA(MEMANTINE) morning and night,also since the last three weeks I have been using LAVENDAR OIL BURNERS throughout and it has worked for her,it has calmed her down.

  20. Westie

    Westie Registered User

    I visited Peter this afternoon without the children.

    I could see him walking around in the garden before I went in. He seemed indifferent to me being there and just continued to walk. If I walked with him he answered questions with one word replies but as soon as I stopped walking, he just carried on without me.

    We went to his room for me to sort out washing etc. but he wasn't happy about that and asked me to go. I had been there 10 minutes!

    I did manage to read his notes which were pinned to his noticeboard. They observed his extreme agitation, inability to stop walking, inability to stay seated for a meal and the fact that he didn't interact at all with anyone else. Nothing new to me, but still hard to read about.

    Although his sodium valproate dose has been doubled, I didn't notice any change.

    I wasn't expecting anything from him today, but did find it very depressing. He didn't seem upset at being there, he didn't seem..........anything. Just flat and totally emotionless.

    Only weekend staff on duty so no chance to talk to anyone either. What an end to an absolutely awful week.


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