Early days and struggling already.

Hi Seekinghelp welcome to the forum .

This type of situation is happening far too regularly that families are expected to do all the care as services don't kick in on discharge and  that's not how it should be

I am so very sorry to hear what is happening for you and your family and most of all your poor mum.. The GP and District Nurse could maybe  offer some input and help whilst you wait for Social Services to kick in especially in relation to the pain management for your mum. Please do give them a call as they could provide input in the interim  If I was you I would continually be calling Social Services and informing them of the urgency of this situation to enable you and your sister to get back to work and earn money. I know it is not easy for any of you right now and you may want to have a chat with the helpline at Macmillan to see if they can offer any ideas about other support to help you and your sister in this interim period.  08088080000.

Hope you mange to get something sorted out that meets your mums needs. xxx Sending some hugs. x 

Hi SeekingHelp.

Dad also struggles with his pain levels and was frequently admitted to hospital for this on top of everything else going on with his health and the cancer. We were put in touch with the Pallative Care team at the hospital and after his most recent stay in hospital, they have taken over Dad's pain relief and things are a bit easier to manage. Dad takes oral morph too, so I really feel for you as I can only imagine your mum's situation and it so distressing to see your parent in acute pain. Pallative Care have supported and guided us how to manage Dad's pain at home- If you haven't already, I wonder if this might be an avenue to see if they can help better manage your mum's pain? We were put in touch with them due to Dad's hospital stay, but I think your mum's GP or the Macmillan advice line would be able to help navigate this or be able to put your in touch. GPs can sometimes be a nightmare to contact as they are so busy, but you can always write to them and ask for them to call you or send a written reply. 

It gets overwhelming who to speak to about everything, however Dad's macmillan nurse and the support line have been helpful when I feel directless supporting dad. I called Macmillan as I felt incredibly overwhelmed at the physical care that this involved caring for someone. Macmillan advised that they sometimes have District Nurses (local to your area) who can sometimes support with following up referrals and help point you in the right direction to find the best support and care. I would recommend calling Macmillan support line as you can speak to one of the nurses who can advise you - the nurse I spoke to just took my postcode and was then able to help tell me where to go locally for the support - she even looked up the numbers for me. There might be options in the area for you which can help put some relief for you and your sister.

In all of this, please don't forget to look after yourself and remind your sister to do the same - I thought the hardest days were when Dad was in hospital, but it has been harder when he has come home, as you say to manage the medication, washing that needs to be done. Our family have drawn up a rota so that we can take planned breaks to re-cooperate and support each other - this also might be helpful for you to have. When we did the rota, I hadn't realised just how stressful I found it cooking for dad (I'm not the cook in the family and can even ruin toast!) and found relief letting another family member support with this instead with some frozen homecooked meals. This then allowed me to better spend my time with dad being the one to sort his washing and ironing and taking him to appointments which saved another member who found driving in rush hour stressful. Our rota isn't perfect, but understanding who does what for Dad and playing to our individual strengths was a huge support to us all and it made managing his care a lot more manageable. 

You and your sister are doing a great job - best wishes to you both and your mum. 

Thank you so much for the replies.

We have finally been referred to the palliative care team and have the district nurses guiding us on pain relief and im pleased to say it’s a lot more manageable for Mum.

In fact we have people tripping over themselves to help which is amazing just wish it was 3 weeks ago. 

The rota idea is a good one, as is playing to each others strengths.  I’m also considering asking for outside help so this frees up more time to be mums daughter.

Sending you and your Dad positive healing thoughts.  X