Support for parents

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Looking for a bit of advice please!

My parents - in their 70s - are caring for my brother (who lives with them) who has secondary lung cancer. He is very 'closed off' and shares very little of what the doctors tell him, making it very difficult to discuss anything. we know that his cancer is not cureable and we are really starting to see him deteriorate and struggle, loosing his strength and finding it difficult to move  (he had a leg amputation in the summer due to cancer, after which it was found to have spread to his lungs), make it to the toilet etc.

The 'secretiveness' is making it very difficult for my parents, and as he deteriorates, they are struggling to care for him. They are in need of someone to turn to, to ask for advice and support but aren't really sure where to turn and have been given little guidance. The burden on them is taking it's toll and I don't know what I can do, or who might speak to me on their behalf to see what help they can get, or what options there are for my brother, as I feel he may not be in the right place being at home if they are struggling to care for him - but what are the options, and who decides if he might be better to be admitted into hospital or similar?

Can anyone help point us in the right direction on who we are best to speak with? The GP? The hospital he is receiving chemo from? They don't know where to turn and I'm worried about their health because of this stress!

  • Hello  

    Thank you for contacting the Online Community. I am really sorry to hear that your brother has secondary lung cancer, and that the stress of caring has led you to worry about your parents’ health. I can hear how difficult it feels trying to care and meet their needs when your brother is ‘closed off’ about their illness. I am really glad you have got in touch with you saying you’re not sure who to speak to.

    With you mentioning you have noticed a deterioration in your brother’s health, it’s important that their healthcare team is made aware of this so they can be assuring appropriate support is in place. Whilst at home they can be contacting the GP who is still a main source of support and care, or if they have direct details for their cancer team such as: a clinical nurse specialist, a palliative care team (which is where community Macmillan Nurses would work out of), or the treatment team, you can contact them. Their healthcare team would be best placed to discuss options in terms of the most appropriate care with you being concerned that they may not be in the best place being at home just now. Please know also that 111 is always available if you have any concerns about worsening, changing or new symptoms and are struggling to speak to the GP or cancer team. 

    To access additional practical support such as carer’s, equipment, and potential modifications to help make care at home more manageable, you can contact the local Adult Social Care team directly to discuss. They could carry out a Needs Assessment for your brother, to see what support is most needed/most helpful, as well as look at a Carers Assessment for your parents to ensure they have the support they need when coping such a demanding role. You can find the local teams contact details by looking on their local council’s website or using the Gov.Uk tool.

    If they haven’t already done so Henry201, it also sounds important that your parent’s register with their GP as carers so they are aware of this can be supporting where possible.

    Our booklet, Looking After Someone With Cancer sounds like it could be a really helpful resource just now as it talks through support  and professionals available to help care for someone with cancer but also focuses on keeping yourself well as a carer and ensuring you have what you need too. It also lists additional Carer’s-specific support organisations and contacts at the back which may be useful.

    With this sounding such a worrying time as a family, please know the Support Line is here as a place you, your parents, or brother can contact for emotional support or to ask any questions. We don’t want you feeling overwhelmed or on your own with this. We are completely separate to the healthcare team, but available 8am-8pm, 7 days a week on:0808 808 00 00 or via web chat -so do please keep in touch as much as you need.

    Our Carer’s Forum on the Online Community may also be a valuable source of support if you’d like to connect with others coping with a similar experience.

    I hope this information is helpful. Please do just get back in touch if you have any questions or need further support.

    Take care,

    Jenna 


    Information and Support Adviser


    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days
    a week, 8am-8pm) or by email