palliative care is so confusing

Vatb95 4 months ago

2 replies

Edited by Vatb95 4 months ago

My mum has recently been put on an end of life pathway for suspected bowel cancer. There is no way of ever knowing as she is far too unwell with a range of complex health conditions and chair bound.. to have the tests/biopsy, and even if she did the outcome/treatment would be the same; to treat her symptoms and keep her as comfortable as possible..

The last couple of months we have seen an increase in pain and use of morphine. She is on 24/7 oxygen which we're learning means morphine works differently for her. This weekend we had paramedics out for suspected sepsis but once morphine was given she settled. She's being treated for an infection but now has been placed on a pathway and we have everything at home now and the team to contact, but now we're wondering is this an infection or will we see more days like this?

I work 4 days a week, with a toddler in childcare, and partner that works abroad a lot. I'm exhausted with this push-pull of every time Mum has a bad night that turns into a bad weekend - we're genuinely concerned this is the end.

How long does this go on for? Is this end of life? There's so many questions that can't be answered and no clear pathway or support for us. Does everyone feel this way? I'm exhausted already. We just lost her husband / my dad a few months ago unexpectedly - I'm dreading she will pass unexpectedly too and we'll never be prepared for it.

Alexia 4 months ago

Hello Vatb95, Welcome to the Marie Curie Community.

We are sorry to read about your mum and all she is going through. We are also sorry to read about the loss of your dad.

It does sound understandably exhausting for you supporting your mum, looking after your family, and working.

There can be so may emotions that we may experience when we are looking after someone, and it can be difficult when health care professionals are not always able to provide us with answers and sometimes it can be difficult to know how long this could go on for.

More information can be found on our website about accessing support for your mum.

How to get nursing and personal care at home (mariecurie.org.uk)

It’s normal to feel a lot of powerful emotions with everything that’s happening, you may have lots of questions about caring for someone who has a long-term illness. You can read more about being a carer and ways to look after yourself on our website at https://www.mariecurie.org.uk/help/support/being-there">https://www.mariecurie.org.uk/help/support/being-there

We appreciate looking through this may lead to further questions, please don’t hesitate to come back to us here on the community or through the Support Line: Freephone 0800 090 2309.

Hopefully others here on the Marie Curie community can share their experiences and insights.

Take care,

Alexia-Support Line Officer

Jan1 4 months ago

 Hello Vatb95, firstly so sorry to hearing how challenging it is for your Mum, yourself and the family at the moment.

 In support of what my colleague Alexia has shared with you already, you may wish to ask the GP and/or District Nurse, consideration of referral to the local Specialist Palliative care team, for support with symptom management, if not already known to the team. This can be a really useful second layer of support, especially if symptoms are a little more complex.

In addition, a team such as Marie Curie, can help with planning for the future, and support for the rest of the family, especially if small children in the family. It may be that you wish to speak to us on the telephone, to talk around this information in more detail, or consideration of booking a nurse call back when convenient on Tel: 0800 090 2309.

Take care,

Best wishes,

Jan- Specialist Palliative Care Nurse