Hi, my name is Francisx! I am a middle age man with severe Osteoarthritis...

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Francisx
Francisx Online Community Member Posts: 1 Listener
edited April 27 in Families and carers

I am a middle age man with severe Osteoarthritis.

I am also a carer for my mother with Alzheimer, epilepsy and now lung cáncer.

I am increasingly struggling in my daily life, physically and mentally with my condition. Also this is affecting my ability to care for my mum, who needs 24/7 care. I am worried that I won't be able to care for her properly, as my condition increasingly degenerates.

I've had some sporadic non specialised support, like standard carers for a few hours, but I have not found continuous specialised support that would improve our situation, so I am very worried about the escalating difficulties.

If anyone has had a good experience with any particular group or charity for general and specialised support, please let me know.

Thank you in advance for any advice.

Francisx

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Comments

  • Rosie_Scope
    Rosie_Scope Posts: 6,037 Scope Online Community Coordinator

    Hi @Francisx, I'm sorry you haven't had any responses to this yet. How are you getting on?

    Did you manage to find any specialised support for you and your mother?

    Hope everything is going okay.

  • Bluebell21
    Bluebell21 Online Community Member, Scope Member Posts: 12,154 Championing

    Hi @Francisx welcome to the Community. I an sorry you are having such a challenging time.

    Have you had A Health & Social care assessment?

    https://www.gov.uk/apply-needs-assessment-social-services

    It might also be worthwhile to have a conversation with your GP.

    Please take care of yourself.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 277 Empowering

    Hi @Francisx

    Welcome to the community.

    My mum has a dementia diagnosis. My Dad is her primary carer, and my sister and I are providing extra support. But the emotional toil is exhausting. I can only imagine how tough life must be doing it alone, alongside other medical conditions.

    I'm wondering if you have contacted Dementia UK. They have Admiral Nurses who you can speak with for practical and emotional support.

    As Bluebell21 has said, please remember to take care of yourself.

    Best wishes.

  • Santosha12
    Santosha12 Online Community Member Posts: 1,441 Trailblazing

    Hi @Francisx,

    I'm so sorry you are struggling it is a lot to deal with on your own and when you have challenging health problems and need to be able to look after yourself and prioritise you too: I get that as it rarely can happen and our wellbeing becomes very much secondary. I helped my mum who had Alzheimer's disease, vascular dementia, submandibular cancer and myeloid dysplastic syndrome (like leukaemia) but I was a nurse and was relatively well then but it was still incredibly tough from 2014 till she sadly went in a home in 2019 but of course, the support for her didn't just stop then. Ramped up, if that was even possible to make sure she was properly and kindly cared for; I have beady eyes where care is concerned and they're in the back of my head too !😉🙂

    I have received support off Dementia UK too in the past although there were no Admiral Nurses in mum's area.

    I also contacted Alzheimer's UK who were very helpful. They're on 0300 111 5555.

    I don't know if you've contacted Macmillans Cancer Support, they're on 0808 808 0000 8am till 8pm, 7 days a week. They can help regarding your mum's diagnosis in many ways and provide support, advice and signposting for you if needed. They've helped me and my mum in the past a lot.

    For yourself with the osteoarthritis, have you ever spoke to Versus Arthritis, a charity who have a helpline. They've also helped me and are on 0800 5200 520. Mon to Fri 9am to 6pm but they're closed from midday on the last Friday of the month for training.

    I found things eased a bit in a helpful way at certain points throughout my journey with mum, when I'd got support. My address book is full of where I was signposted too! I've never contacted Carer's UK but have heard of them they may be of help.

    I contacted the local social services for an assessment for mum at home and that led to carers three times a day, a bath lift chair and other items for the home as she lived alone. That only came into place July 2018 so was in place for a year. I and my sisters still went regularly though of course and I took mum to all her appts (160 in one year 🥲) followings falls etc.

    Sending you my very warmest of wishes. Even seemingly small changes, or areas of support, can end up being quite profound in how it makes us more able to cope well ourselves.

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