Any help or advice would be appreciated

KTJ07,

You've got quite a workload by the sounds of it hon.  To be practical firstly:

1) if there's no chance of L being constipated and she is passing a sufficient amount of stools then I would say the lack of control is down to her brain tumour sadly.  The brain processes the signals to go to the toilet but for L the pathways are damaged so she may have some idea she needs to go and become agitated but may get muddled with what to do. Patience, pants and a pad plus if possible a regular routine of going to the toilet that suits her preferences will support her and maintain dignity and pride. An explanation to her re this might help and will include her in feeling safer I hope. District nurses are a great resource for advice plus L's specialist brain tumour nurse. It sounds like you are doing a great job cooking for L as she's going regularly.   Ditto for keeping her hydrated as we know that contributes to alleviating constipation. So well done x

2) as for L's vision, that must be so scary for her. It may feel like her world is shrinking and she's losing control over her own life.  Check with GP or specialist re her vision and ask questions if you are unsure. Is it permanent, will it worsen?  It may affect her walking so your guidance is very important as you know.  You are obviously experienced so you'll know about keeping things she needs in front of her and not off to the side, minimise clutter on floor to avoid trips and slips.). Gentle conversations about this with her may alleviate some of her distress.

3) So as regards L's agitation and confusion, my guess is the tumour is the main cause but keep an eye out for urine infections as they can increase confusion as you probably know already. You say it's most often when she's with her husband. I wonder if, as his main carer prior to her diagnosis, she's struggling with "keeping an eye on him"? maybe she's worried about what will happen to him when she's gone? Again there should be a brain tumour nurse specialist within the oncology team who you could turn to for advice. Maybe a conversation re plans for him might help?

I'm probably rambling but I've tried to be practical. I'm a nurse who has had experience with cancers but I'm also a melanoma patient first and foremost so please find some local people to support you so you can carry on the wonderful job you are doing. You also know that you can't work 24/7 and must have some time off in order to replenish yourself. At work we share the load but here it's all yours.  Social services may be able to supply carers for a short stay for you to rest, district nurses should be able to help with this one too.

Please look after you, you are doing one amazing job here. Xx

I truly appreciate you taking the time to reply, everything right now just seems like such a struggle and we have no support, the clinical oncology nurse simply doesnt call anymore (we expected a call on monday, its now thursday) 

the speech and langue has therapist has said she cannot help as L is unaware of the prognosis

Thank you again for your response its very appropriated

Hi KTJ07,I would suggest that you get in touch with social services and see if there is some extra help available.I cared for my elderly disabled mother for many years until I got cancer.Mum was going blind and she found it helpful if things were placed in the same position.She had a small movable table by the bed and everything was organised so she could pick items out by shape.This seemed to work well for her.Before mum moved into a nursing home she had begun to be incontinent of urine sometimes.She had dementia and started going in a metal waste paper basket instead of the commode.I did try to make more of a routine taking her to the loo but it didn’t always work.If mum became extra confused she usually had a urine infection.I had the help of 2 carers in mum’s last months at home as I was struggling after my cancer surgery.I did find them helpful as I could pop out to the shops or go in the garden.Try and find a few minutes in the day just for you.It isn’t easy but it is good to have a break.My background was in nursing but caring for a relative is a completely different experience and it is stressful.I’m stressed now organising my mum’s funeral,she died last Friday.Best wishes to you,you are doing a great job.Jane xx

Hi again, 

Ok so yes contact social services for advice and help like winkers60 says but I would also talk to L's GP about palliative care support from community palliative care nurses and carers.

Any local hospice where you live? They would be happy to offer info too.

As for the speech therapist I'm confused, what has L's refusal to hear her prognosis got to do with being treated?  Maybe there is a reason but you need it explained 

Who is the next of kin here? Can they chase up some of these things, you cannot do it all alone!

As regards incontinence pads/pants you can get these free through your local hospital's Continence Nurse Specialist (it could be income related so not free in some cases) or in fact through the local district nurse I think.  There certainly needs to be a GP review of L including palliative care and oncology input plus possibly some emergency drugs.  It does sound like a poor discharge plan to me.

As a previous palliative care nurse I always found that people who did not want to hear their prognosis were in fact aware time was short but simply just wanted things to happen without being talked about and that is possible.  

Hope you can chase up some help, keep on at people til you get some support. You cannot do it alone. X