1. Westie

    Westie Registered User

    I have been reading the posts on this forum for a while and have found it so helpful I felt it was time to join in.
    My husband is 52 and was diagnosed with frontotemporal dementia (specifically picks disease) last year. That was the worst day of my life. He was in hospital at the time being treated for what I thought was depression or some sort of mid life crisis. On one visit, his consultant called me in to his office and told me out of the blue that Peter had dementia. Showed me a brain scan, got me a cup of tea and left me alone with a box of tissues. Peter walked out of room saying he was late for dinner. How I drove home I will never know. Just writing about that day has started me shaking again.
    Peter then spent 6 weeks in an assessment centre and has been at home since December. Must confess I am finding life very stressful. I have 2 children who are 14 and 9 and my overriding priority is to try and maintain some normality for them. Impossible really and they both know their Dad's diagnosis. My son (14) was really badly affected at first and refused to speak about it to anyone. Better now with family and a few trusted friends but he hasn't told any school friends etc. and hasn't had anyone round to our house for months. Breaks my heart to watch my 9 year old daughter caring for her Dad and telling him what to do especially as her loving care is no longer reciprocated. Complete role reversal. Why my children should lose their childhood like this is so b***** unfair. I work part time and will fight to maintain that for my sanity. All professionals we have had contact with seem to assume that I will give up work to care 24/7 but it isn't that easy. Have a huge mortgage which I somehow have to pay. Peter too young for a pension and he was made redundant last summer. Have taken legal advice over that as would seem made redundant when no longer performing his job well. We know why now but didn't back then. Dealing through solicitors to try and get agreement to a permanent health insurance claim he would have been entitled to if still employed. Waiting each day for news as it is critical for my financial future. Other option is sell house and release equity but been advised not to do that as will eventually all go on Peter's care and leave myself and children with nothing for future. What a mess.
    Peter goes to day centre for 1 day a week and has crossroads in one morning. I manage to work for those times. Rest of time, just us. Neither of us have any family who live nearby. One of P's brothers takes him out every couple of weeks for a day which helps. His other brother can't handle the situation and hasn't spoken to us for months. His mother is 89 and has been so badly affected she took an overdose last week. My mother has early stages of vascular dementia and is being cared for by my sister.
    Sorry this sounds so dismal but life is dismal much of the time. Not sure how we will get through but trying just to cope with one day at a time. Just typing this out helps enormously. I'm sure this forum will be a great help to me.
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Westie,
    Welcome to TP though I am so sorry for your circumstances - it must be so difficult for the whole family - but you especially as you try to support and protect bothPeter and your children.

    This is a good place to be - you will find that we all support one another - rejoice together in the good patches and cry together in the bad!!

    Love Helen
     
  3. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Hi Westie. It is so difficult for you, I guess on here is a good start. Try your local Alz. Soc. branch. They offer lots of useful advice and direction who can help. ie get that council tax reduced (-25%). I am sure they would also be able to explain how you tell a 9 yr old. I think you can get help also with the mortgage. Take 1 day at a time. Does your husband know of his condition ? and is he on drugs yet ?
    cris
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Warm welcome. Sorry you had to find us (i.e your circunstances) but glad that you did.

    Post with queries, in anger, frustration whatever. We may not be able to make a difference, but we will understand and care.
     
  5. Gromit

    Gromit Registered User

    Apr 3, 2006
    187
    Edinburgh
    Welcome

    Just wanted to say a big welcome to TP.

    Your story really moved me. I am so sorry for your circumstances, I can't imagine what it must be like for you and your children.

    You are in very good hands here on TP. Do stay in touch.

    Take care.

    Alison
    x
     
  6. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Westie what a minefield for you and your family!:(

    Do contact your local branch of the society they can be such a help.

    Many other people on this site will have had similar problems and will support you so post often.

    Just wanted to welcome you.:)

    Linda x
     
  7. annesharlie

    annesharlie Registered User

    Westie

    Wow! You are carrying such a heavy, heavy load right now, it just is NOT FAIR! I can relate in some ways, my husband, also 52, was diagnosed with FTD last month - it is such a very stressful and consuming time when the horror of that diagnosis settles in, - like everything in life that is just awful, it fills your every waking ( and often sleeping) moment. It has eased slightly - a person cannot live under that degree of stress for long, my situation is no different than a month ago, in fact he's worse, but I just somehow feel stronger. For me, one of the very hardest things is this - I can't talk to Ron about my anxieties, stresses, worry, thoughts of the future etc, as he just doesn't get it - he cannot actually grasp the severity of the situation. Nice for him, but it is hard to have the one person that you'd usually lean on for help, unavailable for that. I ache for your young children, my youngest is 17 - but yours, you're right, it's their childhood, and they shouldn't have to face this. My three kids and self met with a psychiatrist, and that was really helpful - she could explain the disease and answer their questions, much better that it all came from her than from me. I really feel it helped them understand the situation a bit better. I'd strongly advise that, it's too much for you to be the only one to help them through this. Quite probably your son is embarrased by his dad? Perhaps you could phone some of his closer friend's mums and explain the situation. It's important that he has some fun with his friends - people are very understanding and children often more accepting of these situations than adults.

    Is it possible for Peter to have another day at the day care? I do feel it's important for you to have some time just with the kids, or indeed a bit more of a break for yourself. Right now Ron is with his mom for two days, and although he isn't difficult to care for, the sense of freedom is just so wonderful, to know that for today I am responsible only for myself. For that reason too, I support you in wanting to work. Don't forget - I know this is hard- but in the long term you will have to be strong and independent, and you'll have to cobble together your life as best you can when this is all over, and keeping on with working will help you to have some normalcy.

    Financial worries are tremendous - it's bad enough you have to deal with the diagnosis, but this adds to the burden. You are wise to get legal help, I do hope that all falls into place. I know how stressful it is, I have been very uneasy in this period before the disability kicks in, there is a lot of uncertainty. It will be better when you know exactly where you stand.

    Thank you for posting your story. It helps us all to know that all over the world there are others facing similar situations, we don't walk this difficult journey alone.

    Anne
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Westie, welcome to TP.

    I'm so sorry that your husband has been diagnosed with Pick's, and at such a young age. It does seem strike younger people. It must be so difficult for you with two young children to bring up. I'm not surprised they're finding it hard to accept, it must be impossible to understand what has happened to their dad.

    I think you're right to continue with your job for as long as you can. Make sure SS give you all the support you need, it's your right.

    I do hope you manage to get a settlement of your claim. It all adds to the stress when you have financial worries to cope with as well. You're right not to sell the house, you just don't know when Peter is going to need care, and the money can disappear so quickly. You have your childre's future to consider.

    I'm glad you've found this forum, people here are so supportive. Keep posting, and let us know how you get on.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,655
    Kent
    Hi Westie,

    Reading your post filled me with sadness.

    I hope you get some comfort and support from TP members, many of whom are as young as you and your husband.

    You have so many responsibilities, your home and children, your work, and now your husband. I can only advise you to get as much help as you can.

    Please keep in touch and look after yourself.
     
  10. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Hello Westie,

    Just to echo everything everybody else has said to you on this forum. My heart goes out to you, it must be so tough. I too found that people assumed I would drop everything when my mother was diagnosed (my father is very ill too) but I have kept on my part time job and feel it is absolutely crucial to me keeping my sanity too, you are so right about that.

    This is a brilliant forum to be part of, doesn't always provide a solution, but the most important thing for me was to feel less alone with my problem. Also if you should feel in need of a bit of light-hearted banter, it's there too! We haven't lost our senses of humour!!

    The very best to you....
    Fiona
     
  11. Westie

    Westie Registered User

    Thank you all so much for your lovely replies and warm welcome. I don't feel quite so alone.

    Cris - yes , I have had quite a lot of contact with the local Alz Society and they have been brilliant. Just finished a 14 week carer's course run by them which was very informative. Trouble is I am such a minority. All other people are older than me and don't have same worries about young children. Peter does know about his condition but has absolutely no insight into what that means either for himself or us. He is on Aricept (not expecting any affect as he has FTD), Memantime to help his intense restlessness and Zopiclone to try and keep him asleep for more than 3-4 hours at a time.

    Anne - I see your husband also has FTD so I'm sure you will have experienced similar situations. Like you, I find it so hard to have no one to share things with. Peter has lost all empathy and insight into situations and none of my worries concern him one little bit. He behaves like a selfish toddler and is always demanding my attention. He wants to go out constantly, but when out then wants to come home. He doesn't see any reason why I should spend time doing household chores, shopping, talking to children or in fact anything which isn't directly addressed to him. He comes across as unfeeling and arrogant - even to the children - and it is so hard to keep reminding myself that it is the illness doing this to him as it is still Peter standing there saying hurtful things. He is not allowed to drive so his independance has gone and he relies on me to take him anywhere. His concentration is very poor (5 mins max) and he paces relentlessly around the house. He goes out alone about 15 times a day and will walk around the locality. Sometimes he is 10 minutes, sometimes an hour. His memory is intact so he doesn't get lost - yet. He is on waiting list for another day place but that isn't ideal either. He comes home in a very agitated state as he hasn't been able to go out at all. Spends whole evening in and out of house. I have to take him to the day centre as well as no transport available where we live.
    Have seen a psychiatrist with my son. Helped a bit. Have been advised to let my daughter just absorb information as she goes along. Our situation will become 'normal' for her and she will adapt - at least that is the theory.

    We are seeing Peter's consultant this Friday for a review. Not sure how that will go. Amazingly, Peter is still able to put on a good act for strangers sometimes and reserves all his temper for me. Last visit consultant told me not to talk as Peter was the patient. I nearly walked out. Can't believe how he listens to Peter's version of life rather than mine.

    Gone on a bit - sorry all!
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,655
    Kent
    Dear Westie,

    Never apologize for`going on`. That`s what TP is here for.

    Good luck for Friday.

    Before I attend any appointment with my husband, I write to the doctor, telling him things I`d rather not say in front of my husband, like the flare ups, mood changes etc. I keep a diary and print off one weeks` entries, and send those too. The doctor finds it helpful.

    Before I did this, if I said anything, it would usually cause an argument, as my husband either denied what I was saying or had forgotten what I was talking about.

    Take care
     
  13. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hi Westie

    I can see already that you are getting alot of emotional and practical support from members in a similar situation.
    Is someone taking care of ypur Mum and Mother-in-law?
    As a mum, you will find hidden strenghths to say and do the best for your children.
    I really hope, that you, as a young woman, with all thats been thrown at you, can keep it all together.
    My heart goes out to you and hope that somewhere along the way there will be some laughter.
    Take Care Bye for now.
    Janetruth x
     
  14. SusanR

    SusanR Registered User

    Apr 29, 2007
    19
    WisconsinUSA
    Welcome, Westie. I recently joined the forum also. Your plate is awfully full and when you need to air out, this is the perfect place. I am a very private person and don't discuss my feelings to very many and this is an outlet where everyone has felt the same as you - whatever is happening with you will mirror someone's story. Take time away for yourself and your two children, so young to have to deal with this. Cherish the brother who helps - I think that was such a disappointment for me when my husband's friends stopped calling.

    Talk to us.

    Susan
     
  15. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Thanks for posting Westie. Reading these postings on this site just amazes me how this disease affects everyone so differently. I know there are various types but all are different.
    You can tell by the time of night (1-30) that i am having a bad time. Susan is in bed asleep, but as you say they are oblivious to the problems of daily living and we have no one to share
    our burdons with. My susan is on Ariept and has been for 6 years. I also write letters to the specialist just before our visit explaining how Susan is. One because I do not want her to realise that she is getting worse and secondly it may make her angry if she disagreed with something I said. I agree with your sentence "Amazingly, Peter is still able to put on a good act for strangers sometimes and reserves all his temper for me." I think this happens a lot. I experience this.
    My thoughts to you and the children. Please keep writing here and rant / rave all you like.
    cris
     
  16. confused

    confused Registered User

    May 16, 2007
    4
    Frustrated confused and angry

    :confused: I am absolutely petrified at present I am only 48 years of age I have almost been sectioned twice but the decision was bordeline and my husband managed to keep me at home. On one occassion I was pulled out of the sea by policemen and injured one of them by freaking out and kicking him in his privates after being restrained and kicking off leg restraints. I have just been for a ct scan I have an eeg to follow and memory testing. Its so frightening how badly things are becoming and so quickly I havent been officially diagnosed yet I dont know what is involved. I do tend to wander and police pick me up at times but I have had no help from anyone and I do not trust police or officials since being physically attacked years ago and being let down by the system which did not help the victim of crime. I have had my driving licence revoked and am already medically retired due to a complex medical history I often think of killing myself and have had overdose attempst as I simply do not want to be a burden to my poor husband who suffers with angina and rhymatoid arthritis himself I feel so alone. It has been helpful reading other peoples experiences this is the first time I have visited this site. I keep trying to tell myself I will be alright and its not happening but its not so easy anymore so I rarely leave the house, cant cook without setting off alarms and cant turn on a bath tap without forgetting I have done so.
     
  17. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Hello Confused,
    So sorry to read your posting, about all the frightening things that have happened to you. If this is your first visit to Talking Point, welcome, and make yourself at home. There are a lot of people here who will understand your problems and try to offer some words of support. I wonder whereabouts you are? It might be possible to think of a few ways of helping you practically if you mentioned that in your posting, then perhaps other members might know of local sources of support.
    Try to relax a bit, if you can. You are not as alone as you might think. Forgive me for not writing more. I'm a bit sleepless tonight but must try to do the sensible thing and get some sleep. I hope you can too. Kind regards, Deborah
     
  18. confused

    confused Registered User

    May 16, 2007
    4
    Thanks Deborah

    Thanks for your kind words I am in Derby. Up most nights wandering the house take tablets but still dont sleep then exhausted all day. I only had my ct scan yesterday so I have to wait for results was offered transport to and from appointment which was helpful. Was supposed to go to stay with my dad for a few days but couldnt face it. He lives in a sheltered housing himself and many of the old people are more in tune than me I find it frustrating and hard to keep a conversation going just nod or smile as most of the time I havent taken in much at all. I will try to do the sensible thing and go back to bed for the third time.
    Thanks again.
    Confused!!!
     
  19. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Confused,
    Welcome to TP. You wont find that you are alone in being a night owl on here - we have posters in different time zones, and then others like you who just find themselves wide awake in the middle of the night.

    When your CT scans and other results come back, the doctors may or may not have a clearer picture what is going on.

    Take care.
    Love Helen
     
  20. Westie

    Westie Registered User

    Been up a couple of hours as can't sleep tonight. Today is going to be a hard day I fear. Peter's mother has been admitted to hospital again as an emergency - again refusing to eat or drink and now very confused. Unable to walk and has had 3 falls at home this week. Unless some miracle happens, she isn't expected to pull through. Peter's brother (the helpful one) is taking the strain but it has hit me harder than I thought. Guess I'm at a low point anyway. Told Peter and it is so sad to see his reaction - or complete lack of one. I might have well just told him it was raining for all the emotion/response he made. Does he understand and just can't show it or really have no understanding? I don't know. I yearn for him to be himself, even for a few minutes.

    Message on answerphone to ring Peter's employers. Too late yesterday so must do today when I finish work. Am sure they are not ringing to ask after Peter's health as not been in touch for over 5 months. Not expecting any good news.

    Cris & Grannie, I have taken your advice and written some notes ready for our appointment on Friday. Seems so cold and clinical on paper - not about my husband surely. Just confrims all the changes which have happened so quickly. He was working (even if not brilliantly) 9 months ago and now asks me if I will buy him a bar of chocolate as a treat or tells me about a picture he has coloured in at the day centre. :(
     

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