Struggling to cope with new role

Discussion in 'I have a partner with dementia' started by Joe & Echo's Mum, Aug 20, 2019.

  1. Joe & Echo's Mum

    Joe & Echo's Mum New member

    Aug 20, 2019
    Hi. I've just this minute joined this group but I'm finding it really difficult to adjust to my new role as a carer and I really really need some advice.

    I'm in an Age-Gap relationship - I am 47 and my partner is 80 - and we've been together for over 27 years.

    Ronnie was diagnosed with Vascular Dementia this February.

    Previously, he had been admitted to hospital three times over a four-week period in August/September 2018 because he was having what I can only describe as something similar to the Petit-Mal seizures like the ones children can have? He sat staring into space, couldn't communicate and didn't know where he was. The first two occasions he wasn't too bad. The ambulance crew took him to hospital and he came round after 3-4 hours in A&E but no-one could figure out what had happened.

    The third occasion was particularly bad and they kept him in overnight because he was sick several times. They did numerous tests and brain scans and then one Doctor decided, in his wisdom, that he had Alzheimer's. "It's Alzheimers - definitely - I've seen this behaviour so many times before".

    So we both spent a horrible 4 months trying to make sense of everything. During this time a Mental Health Nurse came out to see him and she carried out various tests before reporting back to the Psychiatrist. She then cancelled a further two appointments because first the Psychiatrist was still assessing all the test results and then because the Psychiatrist wanted to see us himself.

    When we finally saw the Psychiatrist he wasn't best pleased and categorically stated my partner did NOT have Alzheimer's and that he would be writing to his GP instructing them to remove any reference to the illness from his record. He then gave us the diagnosis of Vascular Dementa.

    Since then we've had no support other than from his GP but even then that's only to keep his other illnesses under control (he has Type 2 Diabetes, Angina, High Blood Pressure and Sleep Apnoea). We've also both struggled to make sense of this new diagnosis and we're both feeling completely lost! However, we've managed to get by. However...

    This weekend has been a disaster.

    Ronnie has one major passion in his life - Rugby League. He supports his local club and goes to every match - home and away - without fail. This Sunday he met up with one of his best friends at the match. They both came back to our village for a drink and I went out to join them for a change. Ronnie has always been a jealous person and when I went to give his friend a goodbye hug (something I do every time we see him) Ronnie got it into his head that we were having an affair.

    His behaviour really shocked me - he was shouting at his friend, telling him he didn't want anything to do with him anymore and I had real problems getting him away from the situation and back home. We had a heated argument and I just couldn't get through to him. I tried to reason with him, explain, I tried shouting and screaming and I even through a plate at the wall. I ended up so angry and frustrated with him that I'm sorry to say I ended up slapping him several times around the face and head just to try and get him out of this fixated mood he was in.

    I've never been violent towards him or anyone else in my life and it has shocked me to the core to know that I was capable. I knew I was stressed over the situation but I never, ever, expected to behave like that and I'm so scared of it happening again. I don't know what to do, who to speak with or where to even start getting some help and support for either of us.

    Ronnie is adamant that we're finished, that I've chosen his friend over him and that he wants nothing to do with either of us anymore. Before I came to work this morning I looked in on him and when I opened his door he almost jumped out of his skin and he looked so scared. Then he curled up back into the fetal position on his bed and told me to go away because I was just making him feel worse - he was almost in tears and it was so upsetting to see him lying there like that - it broke my heart.

    I didn't know what to do so I just closed his door and came to work. Now I can't concentrate because I'm worried sick about him.

    I have no idea how I'm going to get him to understand that I didn't do anything that I wouldn't normally do, that there's absolutely nothing going on between me and his friend and that I'm not and never have been interested in anyone else.

    How do I get past this? If I can't get him to understand then I won't be able to care for him. He will stop eating and will refuse to interact with me. If I try to get him to do something he will refuse and I know he is going to make himself ill. If I can't get through to him I can't help him. I'm expecting this pattern of behaviour due to past experience - he behaved in exactly the same way when he was younger, when he was still working long before he started showing signs of illness.

    Please, if anyone has been through a similar situation could you tell me how you managed to deal with the crisis?

    Reading this back through I feel so bloody self-pitying and "Oh woe is me" when I should be thinking about Ronnie but I've got no idea what to do to help him.
  2. marionq

    marionq Registered User

    Apr 24, 2013
    With dementia a barrier can go up that is beyond reason. Once that happens there is nothing you can do until and if it passes. We had one of those episodes this morning when my husband got up quite the thing but then refused to use the toilet. He hadn’t peed for twelve hours! I suggested he go into the warm shower instead to see if that would help but he just stood still for forty minutes and refused to cooperate. The carer who helps 3 days a week arrived and she couldnt persuade him either. It was all pretty horrible and if it happened daily then he would have to go into care.
  3. Joe & Echo's Mum

    Joe & Echo's Mum New member

    Aug 20, 2019
    Its so so sad. He used to play professional Rugby League and continuted working up until the age of 75. Then he started having all the health issues and now he's just a skeleton of his old self. I just wish I had a magic wand and make him better!
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Joe & Echo's Mum
    what a worry for you

    it's good that you came here to get this off your chest as folk here will understand

    might you contact Admiral Nurses, as they are there to support the carer and you need someone to talk things through with, and maybe help get some support in place

    once your husband gets a thought in his head, reasoning, explaining or arguing won't get through ... sadly the parts of his brain that used to deal with rational thinking have been damaged by the dementia; he simply cannot rationalise
    so it's down to you to give him space ... hard as it is, when he is like this, back away and leave him be (I used to apologise to dad and say I was desperate for the loo) ... give him time, then behave as though nothing has happened and quietly, with a smile on your face, offer a coffee (or whatever is appropriate) being ready to back off immediately if he hasn't had time to calm
    maybe when you get home you will find that he has settled ... same process, paint on a smile, be calm and behave as though nothing happened (this isn't 'sweeping it under the carpet' it's a way to help him stay settled, and that's what's important for both of you)
    unfortunately, engaging with negative behaviour won't rationalise it away and may leave a bad feeling long after your husband has forgotten what happened, so he knows that he's upset but can't remember why ... and as you are the closest, he'll tend to 'blame' you

    I guess you now know to show no 'affection' to other men, even leave him be with 'the boys', as long as he's safe and will get home (you might ask if his friends can check on his drinking level as alcohol and dementia aren't a good mix)

    unfortunately with vascular dementia there's no medication to help, but it may be wise to let his GP know about his behaviour as some symptoms eg anxiety, aggression may be helped with meds

    this thread on compassionate communication may offer some ways of approaching situations ... I found it helpful in beginning to understand how things were for my dad

    and for a chat, there's the Helpline, the advisors have a lot of experience and knowledge

    now you've found us, keep posting ... it helps to share experiences
  5. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    I too have had times like these it’s hopeless trying to reason I now walk away and then say do you want a cup of tea. There is medication that can help my OH is taking risperidone an antipsychotic it does help with the paranoia and calms him down. I would contact the doctor and tell him about the paranoia and angry outbursts.

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