Early onset dementia.

Discussion in 'I have a partner with dementia' started by Loves2Care, Oct 3, 2016.

  1. Loves2Care

    Loves2Care Registered User

    Oct 3, 2016
    Victoria Australia
    Just wanted to say hello I am a 40 year old woman whos partner has been diagnosed with dementia... Feeling , lost, confused and scared. hoping to learn alot and get some valuable information and support from others in a similar situation.
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi Loves2Care.
    Sorry for the circumstances in which you've found your way to Talking Point but welcome! You'll find lots of support and friendly advice here. There are other members in Australia too if ever you need more geographically pertinent information.
    Do keep reading and posting xxx
  3. Shazzy67

    Shazzy67 Registered User

    Feb 25, 2015

    Hi there
    I care for my partner who is older than me and has Alzheimers, but i too am in my 40's so know to some extent how you must be feeling. Please keep posting as you will get lot's of help and advice, TP is also invaluable if all you need is to vent some emotion, we'll always listen :)
    Take care and seek all the help and advice you can, don't try to cope with this alone
    All my thoughts and best wishes
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Loves2Care
    a warm welcome to TP
    you've come to exactly the right place for information and support - lots of thoughtful folk here will help out, so post with anything that's on your mind - and if you want a bit of a break, pop into the tea room for a cuppa and a chat
    best wishes to you both
  5. Zana

    Zana Registered User

    May 12, 2016
    Hi there ,
    we are also whats considered young... OH was 57 at first testing I was 50.

    Nice ( not really the correct word) to know there are others around who are of a similar age because everything regarding dementia seems geared to 70+.
  6. karenb118

    karenb118 Registered User

    Sep 30, 2016

    HELLO, Just want to say that I am in the same situation as you, my husband has just been diagnosed, It is mind blowing, hope we can learn all we need to know off the wonderful friendly people on this site, Karen
  7. Al_B

    Al_B Registered User

    Jun 8, 2016
    My OH was diagnosed 3 years ago when she was 56 and I was 60. As you say most things are aimed at 70+. I'm looking at what is available in over 60s clubs rather than just dementia events.
  8. Florence.

    Florence. Registered User

    Nov 7, 2012
    Early onset dementia

    Hi there. Welcome. So sorry to know your husband has recently been diagnosed. You have done exactly the right thing joining in with TP. You will find lots of support, advice and understanding here. Never feel you can't say what's on your mind as we've all been there and understand, so just ask or vent away, we all do it at some time. Xx
  9. Casbow

    Casbow Registered User

    Sep 3, 2013
    Loves2care. So sorry this has happened to you both at such an early age. Can only send my love and hope you can lots of information and help here. The people that post on here have probably saved me from, well not sure what. But they are all amazing.xx
  10. Willow Tree

    Willow Tree Registered User

    Jul 6, 2016
    Welcome, Love2Care.

    So sorry to hear of your family's recent diagnosis. We've ALL been there and feel your pain, fear, and confusion. It's very disorienting to your conception of "normal" life.

    You'll find wonderful help here.

    It will take time to adjust yourself to the new reality, then you will be amazed, as you grow and learn and adapt. You can do so much more than you think you can. It is a growing experience unlike many others. Please post more over time, as others have said. So many wonderful, experienced, and caring people here!

    Best wishes and a warm welcome,

    Willow Tree

    "Age is but a fence we build around our minds."
  11. Worry1

    Worry1 Registered User

    Oct 8, 2016
    I'm new too. I'm 46 w a husband who is 60 and something isn't right. I feel lost too.

    I'm wondering how old your spouse is. How bad was it before they figured it out and how did they figure it out. I know something is wrong, but at times I don't know for sure. Its all so stressful and confusing. I feel scared too. I'm sorry for your stress, sadness and in so many ways loss. sincerely.
  12. Worry1

    Worry1 Registered User

    Oct 8, 2016

    how did you get a proper diagnosis? I'm so frustrated. I can't get him into Mayo and the one test we had was not so good. they asked him a bunch of math questions and the presidents etc. He is very smart. he figures out puzzles etc, but yet something isn't right. His behaviors, his lack of talking, his anger. He repeats things over and over when he writing, it takes him a hour to write a paragraph, employees tell me his memory is very bad, but he says no... always excuses. I'm so confused.
  13. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    Hello. My OH was young onset too (58 now 60) though I am older than you (59). I Certainly felt and sometimes still feel lost too. This is a good place to come to let off steam and share experience. Try the young onset section too.
  14. feeb

    feeb Registered User

    Sep 4, 2016
    North East
    My husband also

    Hello Loves2Care

    My husband is also unwell and I have just joined. I am also scared and feeling lonely as my husband just isnt "there" for me. Please let me/us know how you are doing and what's happening for you.

  15. feeb

    feeb Registered User

    Sep 4, 2016
    North East
    How I/we got as far as we are up to...

    My husband (53) is under the care of a neurologist. To start with there were problems at work and OH had to resign his 2nd job. Then there were problems with his main job and I encouraged him to take leave from work. Other friends and family were starting to ask what was wrong. Our GP (family doctor) signed him off work with unspecified problems and asked to see him again in a month; when we went back after a month the GP first mentioned dementia. Eventually I pressed for a referral to a neurologist, partly because OH was feeling unsafe in the kitchen. We have had the results of an MRI scan which is showing mild atrophy but no diagnosis yet. We have more tests coming. One has been for Huntingtons. My OH has no insight into his problems and thinks I am being pessimistic. So, to attempt to answer your question, the most helpful thing we have done has been to get OH in front of a neurologist. There has been a great deal of cajoling and white-lying on my part, with the help of his brother, to get him this far.

    I really feel for you and hope you can get your husband to see a specialist.
  16. vannesser

    vannesser Registered User

    Apr 4, 2016
    Vascular dementia

    My husband was 72 when diagnosed. I was 57.it was a shock but we just get on with things.witch is hard and upsetting at times but we have a long way to go
    Only diagnose at being of this year
  17. NickYO1968

    NickYO1968 Registered User

    Oct 14, 2016
    My Mum has early signs of Dementia but she won't admit it!

    My Mum is not the same person anymore, she has trouble remembering things and says she feels spaced out all the time and sick in the mornings. When she goes to her GP, they just tell her that they can't find anything wrong with her, she is 73.
    Are feeling sick and spaced out signs of dementia? She won't admit that she can't remember things and hasn't mentioned this to the GP, what can I do?
  18. jhoward

    jhoward Registered User

    Aug 3, 2011
    west sussex
    So tough for you, being the spectator of this, NickYO1968.

    I have Alzheimer's dementia and I certainly have times of feeling spaced out, but not of feeling sick. I think the trouble is that once a person has dementia some medics etc don't really pay attention to symptoms of "normal" illness.

    I had been doing life-writing work with people with Alzheimers, so had read up on it - and realised early on that I was going the same way. It started with forgetting things in a way that was new to me, so I went for those irritating tests where they ask you questions about the government etc, and then tell you a story and later on ask you to tell it back. I was fine with the government, but hopeless with retelling the story - it was as if I hadn't paid the slightest attention (which I had) to the telling of the story. Very demoralising.

    There is some medication that's supposed to slow the decline in one's memory (such as donepazil) but there's no real cure. What works for me is taking things easy, good quality chats with my son and daughter, take-away meals with the grandkids with an early night, and short visits from friends. I love pottering in my tiny garden too.

    I used to be quite clever, so it feels like a real loss and rather demoralising whatever the kids say about "You're still you, mum' etc. But as I've said elsewhere I manage to keep counting my considerable blessings and look back on the good times in my life (which are plenty) and face up to the tougher memories too, in short spurts.
  19. Pb46

    Pb46 Registered User

    Mar 9, 2016
    Ulverston, Cumbria
    Hi Loves2care and feeb, and Karen B and Worry1. I'm in the same situation my OH was diagnosed in March age 50, I'm 45, we have 2 teenage daughters, big mortgage etc etc. So yes it's pretty scary. But I have to say the tackling it and getting diagnosis/help/support is so much better than worrying on your own. There are so many challenges that are specific because of our younger age. Grab yourself a network of support. I have a friend that I met through TP and we talk a lot. It's great because she truely understands my situation more than friends and family. We can both be honest about feelings without worrying that we'd shock someone who didn't understand how it feels to have a partner with dementia. If you ever need to chat feel free to send me a message. TP is also good for support x
  20. karenb118

    karenb118 Registered User

    Sep 30, 2016

    MY husband started acting strange a couple of years ago when he was aged 57, he started getting up for a shower at about 2.30 am, when I asked him what he was doing up so early, he said he had to get ready as he had an appointment ,which was at 9 am. while he was showering he kept telling him self what he was doing, he also got dressed while telling himself what he was doing, He went down stairs put the kettle on, let the dog out the front door, instead of in the back garden, I had to get up to rescue the dog from being out in the street on his own, the poor dog was terrified, when I went into the living room he was fast asleep sitting on chair, I woke him asked what he was doing, he said how the hell am I supposed to know you told me to get up and get ready! this sort of behaviour went on for 4 days so I took him to the doctors who sent him for a memory test, which showed he was just above concern, so his behaviour was put down to his previous strokes, & epelipsy, after 6 months they sent for him to have another memory test which he only scored 15 which was 11 less on previous test, so he was sent to memory clinic where they done blood tests &and a cat scan as he could not have an mri scan because he has a pacemaker fitted, that was how they diagnoised him with vascular dementia on 29th sept.

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