feeling isolated and out of my depth....

Discussion in 'Welcome and how to use Dementia Talking Point' started by my hope, Jul 16, 2019.

  1. my hope

    my hope New member

    Jul 16, 2019
    9
    I don't know where to turn. I am 63 years old and my OH is 10 years younger at 54. He has been showing signs of early onset dementia for about 12 months which is progressing. My OH refuses to acknowledge anything is different and refuses to talk. He also won`t go to the doctors as he "doesn't want to know the answer." I have told the doctor of my worries at my appointment but they can`t do anything until he goes to them, which he wont.

    I have a 24 year old daughter (who has a 12 month old baby). She is also in denial that it is dementia and says she won`t believe it until an assessment proves it. She gets very angry and stressed and said I am misunderstanding signs and making a mountain out of a molehill.

    I cannot talk to friends of family as OH would feel betrayed and probably never speak to me again. Again there is no proof. If anyone has any help or advice I would be very grateful.
     
  2. Just me

    Just me Registered User

    Nov 17, 2013
    78
    It is difficult when you can see a persons behaviour changing but they won’t accept it. In my mums case I think it was because she had an inkling but was scared of getting a diagnosis.
    There was nothing I could do but as things got progressively worse I raised it with the GP during a visit about something else and by then Mum agreed to be tested.
    Mum has vascular dementia and to be honest there was little point putting her through that as there is no treatment, only for contributing health issues such as HBP, high cholesterol which should be picked up in other tests. But had she been diagnosed with Alzheimer’s then some treatment may have been available.
    Your GP is aware of your concerns so you may have to wait until your OH and daughter can’t ignore what’s happening.
    In the meantime, reach out to others on here for advice support.
    Good luck.
     
  3. my hope

    my hope New member

    Jul 16, 2019
    9
     
  4. my hope

    my hope New member

    Jul 16, 2019
    9
    Thank you for your reply. My OH knows there is something wrong but buries his head in the sand. As you say if he went to the doctors there might be some treatment to delay progression, that is what is frustrating. Early onset is so aggressive with 4-8 year time period. It is hard not being able to do anything but wait.
     
  5. Lilyies

    Lilyies Registered User

    Jan 2, 2019
    13
    Hello my hope , welcome to TP
    Informing the doctor is the best place to start. could I suggest that you keep a diary of how things are . My hubby has mixed D/A and I find keeping notes helps me to understand and remember how shuttle things are changing.
    Should we need to visit the doctor I have a day to day update which keeps the doctor in the loop.
    Just a thought .... but could he have suffered a mild stoke ?
     
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,717
    Male
    Bristol
    Welcome to Dementia Talking Point @my hope. Sorry your OH and daughter are in denial and even if it is not dementia, thyroid problems and stress are also possible causes, that is causing his problems you have so much to worry about. I can't really add anything, if he would not even go for a general check up to eliminate other health problems. You will find support and advice here, so keep posting and good luck.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    In case it helps (in the sense that you think he could potentially be missing out on treatment) my mother was diagnosed quite early and she has Alzheimers, but while medication was considered it was never given. So your husband is not necessarily missing out on anything by not seeing the doctor.

    I can understand how alone you feel. I hope you keep posting as you will get a lot of support on here.
     
  8. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    As someone else said, there are various other, treatable causes of symptoms that can seem like dementia, and at 54 it is quite likely he has something else, eg thyroid disease or depression. Perhaps saying he should have a physical check up with the GP, might be a path of less resistance. Good luck x
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,878
    Female
    South coast
    Hello @my hope
    My OH is 63, so a bit older than yours, but I understand the feeling of frustration and isolation. Although the symptoms started a few years ago, he still only has a diagnosis of Mild Cognitive Impairment (MCI) as he is able to put on a good show when he sees the doctors and no-one will believe how little he is able to do. It took a long time before other people were aware that something was wrong, but fortunately the family are not in denial.

    There is a lot of support on here and you can talk, ask questions and/or vent as required :)
     
  10. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    I do feel for you. I had many fights with my brother and other family members because I knew my mother had dementia but they were in denial. (I was right, though no one ever said later 'Sorry we didn't believe you and for giving you such a hard time...' :rolleyes:)

    It's probably pointless trying to reason with your OH at this point. You said he realises something is wrong - how awful that must be for him. I totally understand why some people react this way and just 'don't want to know'. But your daughter is a different matter. I think you need to get her onside so that you are united about the care your OH needs, both now and in the future. Perhaps you could discuss with her the importance of putting things in place for the future, like LPA. (Easier if both you and your OH do them at the same time then he won't think it's all about him.)

    It sounds like your daughter is very upset, again not surprising. No one wants to know their parent (especially a young parent) has dementia, and with a young baby, she already has a lot to deal with in her life. She is probably devastated by the possibility. (Ass I'm sure you are.) Perhaps also you can point out the importance of getting an early diagnosis so meds can be given and could possibly slow the progress. (As others have said, this isn't always possible but may be a logical argument with your daughter.)

    If it is dementia, anything you can do to convince her your fears are not groundless will help, so that you can support each other. Perhaps get her to look at some of the posts here on TP? The other thing I'd suggest is you keep a diary of your OH's behaviour changes or memory loss, etc, as it's possible your daughter just doesn't see half the things you do. (I remember how hard it was to get my family to see all the subtle changes - I was also accused making too much of little things and of wanting mum to have dementia!)

    Such a diary would also be very useful later, should you be able to get your OH to a doctor eventually...
     
  11. my hope

    my hope New member

    Jul 16, 2019
    9
     
  12. my hope

    my hope New member

    Jul 16, 2019
    9
    Thank you for your reply. I have considered lots of alternative reasons for the change but early onset corresponds with all signs eg. lack of recall of recent events/conversations, requesting same information multiple times, mood swings and change in behaviour as is now often irritated and angry, poor judgement. I have started keeping a diary/notes as you suggested for if we ever get to a doctor and, as you say, to help understand better where we are up to.
    I really appreciate your thoughts on my situation.
     
  13. my hope

    my hope New member

    Jul 16, 2019
    9
     
  14. my hope

    my hope New member

    Jul 16, 2019
    9
    Thank you Sirena for your reply. It is not so much missing out on anything as knowing for sure what we are dealing with. If, as signs show, that it is early onset dementia then a diagnosis may be needed to access resources.
     
  15. my hope

    my hope New member

    Jul 16, 2019
    9
     
  16. my hope

    my hope New member

    Jul 16, 2019
    9
    Thank you Canary for your reply and help. You made a good point as even if I got him to the doctors it isn`t certain they would see the same symptoms that I am seeing. I am grateful for the amount of support I have received from people via this forum.
     

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