Don't know who to get help from

Angie 1 year ago

5 replies

Edited by Angie 1 year ago

Hi my husband has been on palliative chemo for 12 months now for GBM multiforme...but the word terminal has never been mentioned ..iam at my whits end with all his symptoms ..he's lost weight balance is questionable ..he sleeps alot and as for managing bills and paperwork he hasn't got a clue and won't let me take over ...I'm at my whits end with him as he shows so many signs of deterioration plus some signs of dementia ..x any advice welcome thanks you

Clare 1 year ago

Hello Angie,

Welcome to the Marie Curie Community.

We are sorry to read about your husband’s diagnosis and that you are at your wits end. It is understandable to want to know what is happening and how you can support your husband.

Are you able to talk to the medical team looking after your husband about how you are feeling and his deterioration? You might also like to consider talking to your GP and the district nursing team, if your husband is being visited by a nurse, to look at what support may be available for your husband and also for you.

If you would like to talk to us in more detail our Support Line number is Freephone 0800 090 2309 and we can also be via online chat - www.mariecurie.org.uk/help/support/marie-curie-support-line/using-online-chat

We hope that others who may have had a similar experience feel able to respond and offer support.

Take care,

Alexia – Support Line Officer

Angie 1 year ago

Thank you ...when we visit clatterbridge once a month I have expressed my concerns about things in general and response was that's just things slowing down ... we haven't any other care in place like district nurses . Weve not been given any info regarding who i can reach out to if I'm struggling mentally it's so isolating not knowing which way to go ...x thank you for your reply x

Clare 1 year ago

When you speak with the GP Angie you may want to ask them if they feel that a referral to the community palliative care team would be an appropriate way forward for you both at the moment. You would then be able to speak with a specialist palliative care nurse about your concerns.

Caring for a loved one can, as you mention, feel so isolating. Please do talk with us and others on here about how you are feeling, our Check In and Chat service may also be of interest to you - www.mariecurie.org.uk/help/support/check-in-and-chat

Alexia - Support Line Officer

Angie 1 year ago

Hi Thank you I just don't know which way to turn ....is he like this because of palliative chemo 4 days a month or is this the start of the deterioration...as he's still in bed now ...he's always cold and isn't eating very much has lost weight ..and when he's holding something he's only using thumb and first finger ...its so hard as he's now gone 12 months on palliative chemo ...so is all this just chemo effect or is it the disease progressing x

Hannah11 1 year ago

 Hi Angie,

If you think it would be helpful we do have the option for you to chat to one of our Support Line Nurses who work on our Support Line. They can give some general information around palliative care but do not have access to any medical records. You can do this by calling us on Freephone 0800 090 2309.

The best people to talk to are the people responsible for your husband’s care. They should be able to answer questions you may have. Have you been able to contact the GP as we mentioned previously?

If we can be of any more help, please don't hesitate to contact us again. 

Take care, 

Hannah - Support Line Officer