I need someone to talk to

Discussion in 'I have a partner with dementia' started by Vitesse, Nov 21, 2019.

  1. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    My husband was diagnosed with AD in 2017 although he had the symptoms for some time before. I have no family close by and am his sole carer. He struggles to communicate and I mostly fail to understand what he is saying. I am 20 years younger than my husband. I have managed up to now, but in the last few months the social worker has been trying to find options to give me some respite. My problem is that my husband flatly refuses to have anyone else to sit with him or take him out. We have tried a PA, a Day Centre, and he will not cooperate. This week I have had a volunteer from the RAFA offering to come to spend some time with him, and again he refuses to have him come. I am at the end of my tether, as I can’t have any time to my self, nor even someone to chat to other than phone calls. I don’t know how much longer I can face this. Does anyone have any experience of a similar situation please?
     
  2. PalSal

    PalSal Registered User

    You are in the right place. Here on Talking Point, there are other carers who have experienced this and can give you sage advice.
    In the meantime, you must get out and on with your life somehow. I hope you will find some solutions. I think for me, I would just have to leave him alone for a bit if he is not cooperating and you have no help. My experience, in the early years, with leaving my hubby alone was there were consequences to leaving him alone....ie I called his behavior "search and destroy". When I was gone, he felt lost and alone....so he would search from something; taking things out of cupboards and closest and throwing them all over the place. He couldn't tell you want he was looking for after the fact.Eventually, I set up contracts with carers on a temp basis and now he is never alone. But I am not sure what the solution will be for you. My experience, as the disease progressed, he made less resistance....now he goes to daycare 3 days a week. (just since 2018) but we have had carers/ walkers for about 6 years. That worked in the beginning and it works now. He still loves to hike.
     
  3. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    Thanks for replying. The mental health doctor has told me that sometimes people get quieter and less resistant, as you say. I just have to look forward to that day!
     
  4. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    541
    Female
    Basingstoke, Hampshire
    My suggestion is that you arrange for someone to come - come to see you. That's what you tell him. They can come and chat with you. You stay there so he believes they have come to see you. Hopefully after a short while he will then look upon them as a friend and may then agree for them to come as a friend to him so you will be able to get out. At least that way you will have someone to talk to which is so important.
     
  5. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    Thanks, I’m definitely going to try that.
     
  6. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    121
    Oh I do sympathise with you because my OH is exactly the same. It’s soul destroying isn’t it, the last time I went out was 18 months ago to my mothers 90th birthday party, even though I’d done most of the organising,I only stayed a couple of hours because I knew he’d be annoyed when I got home. He won’t have anyone sit with him even our son, and recently he’s been having temper tantrums and I don’t think it’s fair to put that responsibility on anyone else. I’ve spoken to the doctor about this, so she’s going to see him and I’m hoping give him something to calm him down so fingers crossed things might improve. Good Luck xx
     
  7. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    Thank goodness, I’m not the only one!! You are exactly right, it is soul destroying. He has Risperidone to calm him down, but the problems just keep coming back, and the medication doesn’t stop him refusing to have anyone to sit with him. His son came to visit from abroad for 4 days last week, and he told him to get out some days. I went out for an hour to the shops and he was terribly upset when I came back and had been agitated while I was out. When I have tried to get someone to give me respite, I spend all week worrying that he will refuse to engage, so it’s easier just to cancel. But I am slowly getting more and more despondent.
     
  8. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    121
    Oh dear, I was pinning my hopes on something like that easing his anxiety and so giving me a bit more freedom:( The other thing im worried about , is that although he’ll kick up a massive fuss about going to the doctors, of course when we get there he’ll be all csweetness and light, and she’ll think he doesn’t need it. If that happens I don’t know how much longer I will be able to cope!:eek: X
     
  9. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    Goodness, I could be writing your posts!! It’s exactly the same here. The doctors and social workers would think that he is quiet and easy going!! The only time he showed his real colours was when the mental health doctor told him he couldn’t drive any more! He went mad and stormed out of the room!! The trouble is now he blames me for it mainly!!
     
  10. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    121
    Haha yeah we are same, even going through the telling him he can’t drive anymore nightmare as well! x
     
  11. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    405
    Sheffield
    My OH exactly the same he has Vascular dementia and Alzheimer’s. I tried a carer but he wouldn’t have her in the house. If I left him for a short while he could be aggressive when I got back.

    He would stay with our daughter but he would be agitated and keep asking where I was. The mental health nurse kept upping his dose of risperidone but it only seemed to last a few weeks and then the paranoia would be back and he didn’t even want me to talk to anyone either. I needed an operation in August on my eye and he had to go into respite. I had to lie to get him there. He is still there as he has got worse and I now know I cannot cope alone with him anymore.
    He can still be aggressive sometimes when I visit and he doesn’t like me talking to any of the residents.
     
  12. Bod

    Bod Registered User

    Aug 30, 2013
    1,181
    It's an unfortunate fact, that no PWD will ever agree to something that is in their best interests!
    Unless it's who's having the last chocolate biscuit.

    Bod
     
  13. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    It’s the paranoia that is the most difficult thing to cope with, isn’t it?
    I can do all the physical things but the mental anguish is really getting to me. He doesn’t want me to talk to anyone, and gets aggressive even if I’m on the phone a long time.
     
  14. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    165
    Im like a prisoner 2 werks ago i had to come and live with my dad due to him wandering out at night
    I did have carers but the agency cancelled through no fault of ours now i to report said agency to cqc
     
  15. deepetshopboy

    deepetshopboy Registered User

    Jul 7, 2008
    165
    Sorry pressed post by accident so i have have nobody my relatives were visiting and staying adhoc but dealing with there own lives and crisis
    Trying to get him into a daycentre for at least 1 day a week daycentre dont provide transport and im still waiting on ss assessment again new care agency coming next week so hopefully fingers crossed will have 2 hours “out “ miracle might happen
     
  16. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    Please try hard to get him to the day centre or have a carer come, and make sure you have some free time. It will get harder to get out if he gets used to having you all the time.
     
  17. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    184
    @Vitesse i saw this with my Dad. Mum refused to let him out of her sight and protested if he did go out with grim behaviour. Please pursue all options. I felt like she needed to keep meeting the same person or doing the same activity (suitable day centre) maybe with him along until she became more comfortable. In the meantime at least he would have had company.

    In the end he gave up but lost fitness as he couldn’t go out and lost social connections. It was really sad to see the prison grow around him.

    When the inevitable crisis came (he got worn down, exhausted and poorly) I organised PAs who were brilliant and she just accepted them. They washed her and gave him two hours in the morning when he could go on the laptop, go to the bathroom...eventually he started going out for short walks. It wasn’t an overnight transition...probably took a couple of weeks but daily visits helped. It cost >£1000 a month for a daily two hours. As ever with AD there is a financial penalty to the carer and cared for.
     
  18. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    184
    Meanwhile all the carers support activities seem impossible to access because of her behaviour. She wouldn’t allow him to even talk to someone else (including family) and would start shouting and getting angry if he did. It used to drive me insane being offered respite or activities which we couldn’t use because of this particular behaviour. There seemed no understanding from professionals-they just looked at us as if we were being uncooperative
     
  19. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    I feel so sorry for your Dad. I know how awful it is to be in that situation. Thank goodness you found PAs who your Mum accepts. My problem is that my husband wont engage with anyone else. I am trying all sorts, but nothing has worked so far and I feel like giving up. I know I mustn’t do that, but some days it’s all too much for me. I’m sure I’ll get through it. Thanks for giving me some optimism. I agree with your comment about the financial penalty, the costs seem to be so high when you’re self funding. The doctors and social workers glibly talk about respite etc, but the costs are eye watering.
     
  20. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    59
    My husband just flatly refuses to come to most activities or to have a PA or volunteer come here. Fortunately the social worker is accepting and understanding this, but they can’t suggest anything else, so I am left to carry the burden. The social worker Is even talking about closing the book on us, and leave it to me to phone again if I need them. I have told him I’m desperate, I’m not to blame for my husbands intransigence, so I need support.
     

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