i'm 33 & husband is 54 with vascular dementia

Discussion in 'Younger people with dementia and their carers' started by stikwik, Oct 31, 2007.

  1. stikwik

    stikwik Registered User

    Oct 31, 2007
    109
    Nottingham
    this is my first visit to the forum and i'm tired so want to go to bed but wanted to post something seeing as i happened upon it and have just registered, and i hope there may be others in some kind of similar and fairly unique situation.

    i seek being able to discuss specific issues with people similar to me (eg aged 30's and 40's or 50's, ie 'young') with spouse (ie not a parent) with some form of dementia. i guess i will need to log in again to see if anyone's replied. i'm not used anything like this before but am pretty computer and internet savvy otherwise, so should pick it up fairly quickly. chat rooms/forums are the one area i've still not explored, but in this difficult situation, guess they could end up being a lifeline! of course it doesn't help that most people i mix with in support groups don't use the internet at all (ie being older).

    i look forward to hearing from anyone really - thanks.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Welcome to Talking Point [TP]

    I`m not one of the younger ones, nor is my husband, but there are many on TP who care for younger people with dementia, and I hope you will feel you have come to the right place.

    Whatever the age the support is here for you, together with shared experiences.

    Take care and post as often as you can.
     
  3. 1234

    1234 Registered User

    Sep 21, 2005
    43
    bradford
    Hello stik wik, you have stumbled on a great forum here, TP has been my lifeline last few years, i do not post often, but read most days, and the support is always there, from others who know how this illness just takes over all areas of your life and steals your future from you. My husband Trev is young onset , 57 now , diagnosed 2-3 years ago and deteriating rapidly, but at least i have him home at the moment.He is becoming agressive which is so not him, and the thing i find hardest to deal with far worse than the incontinence, and lack of speech, iam rambling again just wanted tisay welcome and if i can be of any help,or you just need a moan or a laugh please pm me pam
     
  4. Westie

    Westie Registered User

    Welcome stikwik,

    I'm sure you will find this forum a real help - I know I have.

    My husband is 52 and has Fronto-temporal dementia, diagnosed a year ago. I'm 46 and we have 2 children aged 10 and 14. I work part time and have spent this past year trying to juggle the needs of my children with the increasing needs of my husband.

    I too go to a carer's group, and, yes again, I'm the youngest there. Apart from 1 other caring for her husband, all others are caring for an elderly parent.

    Caring for a spouse brings it's own extra problems I feel - the main one being lonliness and the feeling of isolation. There is no one to talk to late in the day about what a rotten day you've had, or to ask for their opinion about the 101 things which have to be done. That's where TP will help you as there is a huge wealth of experience on here and you won't feel quite so alone.
     
  5. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    #5 jackie1, Nov 1, 2007
    Last edited: Nov 1, 2007
    Hello and welcome,
    Just a quick reply as I'm rushing out but I'm 45 and my husband is 54 we have 2 children 7 & 9. I hope that you will find this forum a great help. I know that I do. I will send you a personal message when I get back incase there are thing you would like to ask that you do not feel happy to post on an open board.
    Take care.
    Jackie
     
  6. stikwik

    stikwik Registered User

    Oct 31, 2007
    109
    Nottingham
    Wow, thanks!

    once again i'm a bit short of time but wanted to say already that i'm so touched already several people have replied and responded to me - this is a great place as you have suggested! i can see i may become a regular like perhaps some of you are.

    and you seem so open, like i am too. i am happy to discuss anything with people and do not get embarrassed because it's all just 'life'. and with this illness there are likely to be delicate things that happen - hence we're all in the same boat and can talk freely i s'pose.

    thanks guys... will log on again later today
     
  7. reality

    reality Registered User

    May 31, 2007
    5
    OXFORD
    younger person with vascular dementia

    Hi

    I am 50 and my hubby has vascular dementia he is 56, only found out about 9 weeks ago. I am still trying to understand what happens when you get it. My hubby has just come home from day care centre and made way to go to bed. He has no idea how his behaviour has a impact on how I feel. This I am told is a part of this horrid nightmare. He keeps me awake with hullucinations and getting in and out of bed most nights and the hullucinations can be very upsetting for him and me. I have to rescue him at these times as he becomes even more vunerable, however who is rescuing me. He gets angry when he does'nt understand some of the daily tasks or things we need to do. It is such a complicated illness that I have given up trying to understand it. I know that confrontation will not work and am working on my emotions of letting go not to expect to much anymore.
    I have been told to get the power of etorney issue out of the way and to put our affairs in order, but that seems so final that I have not got round to it yet.
    I feel that even though he can not help the way he is I am forgotten. In about 2 hrs he will get up and I will take him to visit a friend for a few hours and I will have to revolve around that going back to collect him. He will not think that I would like to do something for longer and forget about the responsibility. This illness takes that reasoning away I just have to live with it. Its been a bad week this week I dont know why it just has and I am feeling so fed up that I do not have any control over vascular dementia. As the time goes on its impact has even more ramifications. I wanted to say all of this while I had it in my mind to people who are going though some or if not more of what I am going though. On a more pleasant note my son has just come in to say hello and told me he loves us and he has been missing me, he has just moved house about twenty miles away. I have now got a happy heart
     
  8. stikwik

    stikwik Registered User

    Oct 31, 2007
    109
    Nottingham
    hi reality

    those night troubles sound really difficult. i only have one child because i couldn't bear the night time interruptions! (well, other reasons too) but today i feel tired and all my hubbys symptoms are annoying me even more, so this must be a daily situation for you.

    i guess with diagnosis just 9 weeks ago you may still be in the settling in phase for want of a better phrase. i suggest finding a support group near you is one of the first things to do. i found one via the local alzheimers society branch who can at least pass you relevant phone numbers etc. you will certainly need to meet others in our situation, as i guess your visit here suggests. i have collated information over the past 2 years and it certainly has helped to either know answers to my questions, or know where to go to find them.

    i'm quite a realist and can usually accept whatever situation i find myself in and approach it from a practical sense, ie, find solutions where possible. and those things that i can't change will be hopefully in the minority. 2 things that get me through life are 1) the serenity prayer, and 2) garfield's "**** happens"!
     
  9. reality

    reality Registered User

    May 31, 2007
    5
    OXFORD
    Thank you

    Hi

    Thank you for your thoughtful response. It has taken 3 long years to find out if my hubby had this illness. The medical profession seem to be in denial about early on-set-dementia. Since the illness was identified I have become involved with a wonderful support group and am positive that they will guide me and give me encouragement. This illness has taken the quirky individual (hubby) into an unknown place and I feel very scared for him and myself. Today I just felt like telling someone how I felt and it has been a good experience to do that. I hope that from your corner of the world you keep strong. Thanks.
     
  10. annesharlie

    annesharlie Registered User

    Hi Stikwik

    It is so sad to read about your situation. Mine is quite similar - I'm in Canada, and my husband, 52 ( I just turned 46) was diagnosed 6 months ago. There is a vagueness whether its FTD or AD, but really it's not much difference. We've got three kids, but the youngest just left home for university in Sept. You yourself are so very young, in that stage of life where there should be so many opportunities and joys. I am so very sorry about that. My thoughts though - in trying to be positive - I think to myself that I'm in a much stronger position to face this disease now than I would be in my 70's. I am fit and well and independent and capable, as I am sure you are.

    In a recent conversation with Ron's psychiatrist, she told me that his world would get smaller and smaller as the disease progresses and I must do everything I can to keep mine broad. I do try and connect with friends often, and get out for a walk each day, and leave him to go shopping etc. I do want him to know right from early on that I am busy and will leave him from time to time - so that when the time comes when caregivers may be involved, he's kind of used to me not being there for him 24/7. This is good advice - look after yourself above all, you don't want to burn out. Also lately I've realized how I should be enjoying this stage while it's with me.

    I am sure you are on top of sorting out practical things like power of attorney and disability income etc.
    Anyway, thoughts to you
    Anne
     
  11. stikwik

    stikwik Registered User

    Oct 31, 2007
    109
    Nottingham
    agreed

    hi anne,

    thanks for that, i agree totally. i'd not thought of the positive about being younger helping to cope better - a good way to look at it indeed, and to counteract the usual response of 'what a shame' with me being so young. and poor '(not so) old' steve has to live with knowing he has this disease, which he does. at least the upside of when he worsens, he may not understand quite so much.

    i do feel quite strong as a person, and accept the inveitabilities of the future. also we are making the most of the time we have - not something one normally makes time for when you think you have tens of years to go.

    nikola
     

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