I don't want to be a carer any more

Discussion in 'I have a partner with dementia' started by maryjoan, Nov 3, 2019.

  1. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    I’ve been reading this post and comments because I’m having a bad week. My OH is not as bad as many on here but is forgetful, repetitive and has bouts of confusion. He’s not thinking things through, like walking the dog on a local field in this weather and not wearing wellies so his new trousers are nigh on ruined- I’ve had issues with the family for not having perfect trews ready for him so I’m always under pressure. To be fair, the family have backed off at the moment ( I think someone has pointed out how much it would cost them if they drove me away. I’m not married to him and have no rights).
    It’s like having a toddler which was the part of my children’s lives I struggled with.

    Tuesday, after the third time in ten minutes of him questioning my route choice in the car, I answered a bit too quickly and he said that I annoy him too sometimes and it would be nice to live on his own. I’d just taken him on an over three hour round trip just to look at fancy cars for 20mins. Yesterday it was a trip to look at flooded fields...
    This last week he’s been talking of a friend leaving his wife but couldn’t remember who told him. He’s started asking others for more info so spreading the rumour. It’s not true!

    I get a fair amount of time to myself but the more time I have, the more I dread going home. I’ve suffered from depression in the past and I’m so scared of having a break down. It’s only just over a year since my mum died - I visited her four times a week for hours on end but she was as sharp as a tack right to the end. That’s easier than this already.
    We don’t have conversations like we used to and I can’t ask him about his day if someone has taken him out as he can’t remember.
    I am scared of the future. Many of you will probably recognise this from your earlier days. I don’t want medication but I’m also scared because I’m a fight or flight person to avoid depression and it’s usually flight. I’d be devastated to do this to him. I have my own house but live with him.
    Any coping suggestions welcome.
     
  2. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    184
    Gosh that’s hard @MrsDoyle. I was discussing the difference between parents & children and vs partners with a friend today. We both agreed you’d tolerate everything from your children...parents a huge amount but partners could be variable. Having been in a difficult marriage I’m now in a second marriage with very clear boundaries in my head of what will make me leave. But sickness sways this.

    It also depends on your history and what you owe someone. Relationships aren’t business transactions but I've realised I was emotionally, physically and mentally bankrupted by my ex husband and this nearly killed me.

    I think you always have to look after yourself because you can’t help anyone else if you’re not doing well yourself.
     
  3. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    Thank you.
    We’ve have four brilliant years together but this 5th year has been so hard, with the diagnosis and then a quick dip in his condition. I’ve not been sleeping well so I hope my outlook will improve if I get a decent night’s sleep.
    I take my hat off to those who’ve cared for their PWD for years xxx
     
  4. White Rose

    White Rose Registered User

    Nov 4, 2018
    122
    Hi MrsDoyle, sorry to say this is only going to get worse and you've been together such a short time to have this horrible disease rear its ugly head. My partner and I have been together for 17 years, the last 4 have been the 'dementia' years, although signs of it appeared before then. You've got to really love someone to care for them through dementia - either that or you have no choice for financial or other reasons. For your own sanity you'll have to have support in the form of carers, day care, respite or whatever. The constant repetitive questions will drive you nuts, the lack of conversation at home means it's a lonely place, having to help dress, issue instructions on when to shower, brush teeth, having no freedom, the mood swings, having them glued to you all the time, having to do absolutely everything at home, make all the decisions.... ah it's a joy and that's before incontinence starts (I don't have that to deal with yet). So if you're sure you want to go through all that then only coping strategies I've found are keeping a part time job going, having carers in or taking him to the local care home for a few hours and basically just accepting that this is my life at the moment but one day I'll get my own life back!
     
  5. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    693
    Hi @kindred. I've recommended independent social workers a number of times. When my PWD was first diagnosed we didn't get much help from the social worker. That's when I googled 'independent social worker'. I only did it because I'd heard there were independent social workers who deal with adoption - I guessed that if some specialise in children there might be some who deal with the elderly. Google 'independent social worker' - I've been told I can't name the website here. Once you find it, you can find a social worker in your area and who specialises in Alzheimer's, DOLS or whatever. I emailed 2 late at night and both phoned back the next morning. I had a 30 minute conversation with the first one and chose him. He visited my PWD, wrote a report and explained the options. That was about £400.
    He later visited again, wrote another report and confirmed she now needed full time care. He found 2 suitable care homes, arranged for them to visit my PWD, and we then chose one. As it happened my PWD then had a fall and spent 2 nights in hospital. They wanted to discharge her - to an empty house 2 hours from us. Thankfully, miraculously, the independent social worker arranged for the care home to take her a week earlier than planned. On the day, he collected a bag of her things the carer had prepared, collected her from the hospital and drove her to the care home - about 100 miles in total. He stayed with her for several hours, till she calmed down.
    The second visit and report, plus arranging the care home and getting her there, cost about another £600.
    My PWD is self-funding so I paid from her account.
    Finding an independent social worker was the best thing we could have done in the circumstances.
    If your PWD is not self- funding there might be less an independent social worker can do but they could guide you through the system and advise you on steps to take. Hope this helps.
     
  6. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
     
  7. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    Yes, the eyes in the back of your head plus making sure he doesn’t get upset because he can’t do things. I have to tell him several times a day, every day and as if it were the first time, that he’s not allowed to drive anymore. I must also hide the car keys as he’s always looking for his keys..

    He’s always looking for me and sometimes I go to bed to read when he’s watching tv but he’s there with me within minutes even if it’s only 8.30pm.
    He’s recently had a fall and couldn’t get up which is worrying so we’re getting a personal alarm system installed which recognises gravity.
    I suppose the mild symptoms have been there 2-3 years but this last year, he’s declining fairly quickly and slowing down. He has mixed dementia, mainly vascular.
    I really empathise with MaryJoan, yourself and others down the line.
     
  8. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    184
    I think a big issue is also family support. Many people experience absent family members downplaying the symptoms and not wanting any money spent on care/carers/house modifications etc. Bearing in mind what you said about family and the fact you have no legal status here I would put a hard head on and consider what will happen if decisions need to be made about finances, housing and what support you will get coping day to day. As everyone says it will just get harder.
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    I am so sorry for you having this awful experience. It’s heartbreaking.
    I have stepped back from the whole CH & SW situation. I email & no replies from SW! Despite safeguarding being investigated??

    I find the less I do the more chaotic it gets - but by stepping back it gives me leverage!

    as for the broken limb, my Granny fell infront of my Mum ( when she was a carer )& broke her hip- there was nothing she could have done!
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,965
    going to take on board this post & think this could be a way forward
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    Thank you so very much. My husband has died but I have friends who need help and the SS don't give any round here … this is so helpful. Thankyou.
    warmest, Kindred
     
  12. Joyt

    Joyt Registered User

    Jun 30, 2018
    36
    Hi,
    I just wanted to say how much I agree with you about the devastation dementia wreaks, and how other degenerative fatal illnesses are treated. This one gets both of you. My husband, now 66, is in full time care and I’m in ‘recovery’.
     
  13. Joyt

    Joyt Registered User

    Jun 30, 2018
    36
    Yes. I agree. I think it nearly killed me and if wasn’t for my daughters and closest friends taking control of my situation, I think it would have
     
  14. Pink-geranium

    Pink-geranium New member

    Nov 27, 2019
    7
    Female
    london
    Could Citizens Advice or one of the charities advise on this? The Care and support gov.uk document is long but does set out rights and responsibilities. I can see this coming up for me maybe 18 months time. Much more difficult as OH occupies our house.
     

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