Feeling helpless

Hi Annie

I am sorrry to read that you are in this position. Caring for your partner is exhausting and traumatic.

You mention the palliatjve care team, is this through a hospice? If not, do you have one you can be referred jnto? They arent typically there just at the very end but can iften support you too.

If this isnt the case, go back to the team and say he needs them now. Or go back to the GP. My husband died in October and I was his sole carer until the last couple of days. I was on the phone to the GP a lot in the last 6 weeks as his symptoms got worse. He also stopped eating, I had to beg him to drink and he had hallucinations towards the end. 

You can also request a cater assessment, although mine came through the day after he died. 

Talk here, you can call Macmillan as well. You are amongst people here who get it as we have all been there or are there. 

Thank you Malengwa, that is good to know.  The palliative team have been in touch through our GP and nobody has even mentioned hospice care or input.

I truly do feel alone and let down by the care system.

You can often refer yourself if there is a hospice near you, worth a look on their website or give them a call.

Its the loneliest journey. Do you have family or friends for support?

Hi Annie

Can I just reinforce what Malengwa says about contacting your local hospice. They were incredibly supportive to me during the months I was caring for my Mum on my own. They had a 'hospice at home' service. 

Without them, I'd have felt entirely abandoned, like you. When the GP came (once only in nearly three months), he told me to contact the surgery again if 'symptoms got worse'. Mum had just been diagnosed with oesophageal cancer and I had to ask 'what symptoms' as I really didn't know what to expect and felt overwhelmed. The answer was vague - 'pain' or a 'cough'. The hospice nurse was so much more informative, visited regularly and was always available to answer my questions in patient detail. She also organised sitters for me to allow me to go back to my own home for just a few hours. 

Like Malengwa, I got a care assessment - it took a while but I eventually managed to arrange a package of care for three days a week. Sadly, it only kicked in two weeks before Mum died. 

Having read so many posts on here about how the system has let carers down, I feel so very fortunate that I had that hospice help. For anything from the other parts of the system, I felt I had to cajole, nag and shout. It's exhausting on top of all the emotional trauma. I send you all my sympathy and thoughts.