What can I do to help?

 webley  firstly can I say please breathe, I personally think you are trying and doing a wonderful job in a very difficult situation,  so please don't feel your doing anything wrong .  I was wondering whether or not you have a local hospice that would not only have services in the community but also provides care in the hospice for your Mum  I have found from experience of what I saw at our local hospice that they seemed pretty good at providing pain relief and can also support the families too. As the cancer patient myself I couldn't imagine how difficult it is for the family wanting to do as much as possible to help get me through it, I am currently still cancer free but I did get some pain relief from the hospice via the day unit aswell as joining the arts and crafts group and having relaxation theapy it all helps. I would also like to suggest our careers group here in the community, they are so very supportive and friendly and know how your feeling.  Please I would invite you to phone the macmillian support line too as they will be able to give you additional information about local services that would also help you. Please look below in my post for the number.  And remember to please look after yourself,  and know your doing a fantastic job for your Mum.

Sending gentle bear hugs  

community.macmillan.org.uk/.../carers-only-forum here's the link to the careers group for you webley 

Hi webley 

Not sure if it's worth explaining your situation to your mum's GP and asking if there is any other help available to both of you. She certainly needs her pain managing better. Do the carers give your mum her medications on time? Do they wash her? Do they provide any catheter care? Who can you speak to to get better support than cups of tea?

I hope you've been in contact with the Macmillan support line and had some good advice. It's a hard situation to be in as you are trying to deal with the physical care but also have the emotional side of it as well. I hope you get help and feel better supported soon,

A x

Thank you

St Davids have been and were really helpful and honest. We've been told mum has around 2 weeks left so we are looking at some hospice support. I have called the helpline too but I couldn't really talk. I'm going to reach out later. I'm so scared and really angry. 

 webley , what your feeling is completely normal and understandable. I am glad to hear you have been able to look into getting some hospice support, i know at this stage you are looking to make your Mum as comfortable as possible and she clearly has wonderful support. It’s good St Davids have been helpful to you too, its a lot on your plate so i do hope you are able to get some support yourself during all this and as you say your going to reach out later and absolutely when you feel able.

sending gentle bear hugs  

St Davids came today and she called the GP to visit. The GP reviewed the prescription with St Davids and they have changed her Morphine Sulphate and Oramophe to oxycodone. She starts that tomorrow so the hope is that she is a little more alert enough to eat and or drink.

The incontinence nurse is coming tomorrow. St Davids sorted that out too as I need more bags and Kylie pads. 

The district nurse is also going to visit tomorrow to check her catheter care. I have been changing it and cleaning mum.

Due to the 2 weeks expectancy the nurse is going to discuss hospice care on Friday with me. 

My sister visited today so I took a shower and feel a little better prepared for tonight. The day care can't administer any of her meds so I've set up them ready for the next day so I don't make any mistakes and I'm writing down everything I'm doing and everything mum is needing as i go, so that when they look at what else mum can be supported with I have it all here.

My brother came to visit today too, it was a huge shock to him as he hasn't seen her in a very long time. Mum has lost half her body weight since Christmas. 

But mum eventually realised who he was and she held his hand and went to sleep. She's still sleeping now.

A commode was delivered today as the district nurse found out that I had ordered one as Social services said I had to and she arranged for one that i can wheel into the shower, as her chair doesn't fit through the doors. That has been a real difference for her today. 

I'll reach out for support for me so that I can keep supporting mum when I need to. For now everything is happening all at once and I'm trying to stay on the ball. 

Hi webley 

It sounds as though you have a lot more support in place. Can your sister/ brother take over for an afternoon to give you a break. Take whatever help is offered. It will be a hard couple of weeks for you, you'll need a break and to see your kids. I'll be thinking of you,

A x

Hi Webley and welcome to the group, Oh my, you seem to be doing a grand job and although you initially needed reassurance, it does seem that you've learned that it's ok to reach out and say ' I need some help to do this'. I completely understand how frustrating and confusing the system is, I'm no stranger to this as looked after my parents and looked after my son together with my daughter in law, when he was palliative until he passed, it does make you stronger, it does change your perspective on life. All I can say is well done for reaching out to us and ask away anything else you can think of....or just to say what your doing or going to do, it's fine, we'd love to hear from you. Take care and God bless XXX