Mum has no appetite

[Thomasfam]

Mum was diagnosed early this year, basically sent home with a bag of morphine to end her days at home. We were told mum had only a matter of weeks left to live, this was 6 weeks ago. Mum also came home with creons and a short course of steriods to help with her appetite which was non existent. Having had such a bad experience in hospital, ( ended up staying in hospital for 7 weeks due to negligent treatment) mum has lost all faith in medical profession. No one seems to care, and mum said they have written her off whilst she was in hospital and I tend to agree. She wants to fight this but after 4 weeks refused to have creons and has asked doctor if she can wean off steriods, was taking 2mg x2 per day reduced to one and now finished completely. Since coming off creons has had diarrhoea frequently , on finishing steriods has no appetite at all, and very low mood. Mum hates taking tablets and can't see that they benefitted her at all. I wish she would at least have the creons but mum said she didn't have them in hospital so why does she need them now? Don't know what to do with a lovely but stubborn mum who is struggling with eating and forces food down, but we know it's not enough. Mum has not touched the morphine and might only have two to four paracetamol a day for what she classes as discomfort.

[sandraW]

Hi Thomasfam,

Welcome to the forum the place no one wants to be but hopefully where you will get lots of help and support.

I find it hard to understand why you have all just been left to cope at home alone, have you tried speaking to your GP to ask about Macmillan nurses and district nurses too, they are out there and they should be involved in your Mum's care. Unfortunately as lots of us have found you have to fight for this help and support.

The nurses on here are so knowledgeable, helpful and very approachable, so please give them a ring they are available Monday to Friday on 0808 801 0707 and they will be able to give you all the information on creon and other medication that will help, as we have found GP's don't usually have the necessary knowledge to deal with PC patients, also what agencies to contact regarding Mum's care.

Us Mum's always think we know best, but your Mum does need to take the creon, but she obviously needs to understand the reason she needs to take it too.

I hope when you are armed with the knowledge the nurses will give you, you can get things sorted and get some more help, no one should feel as though they have been written off EVER, take care and please let us know how your Mum is doing sandrax xx

[Guest]

Hi Thomasfam,

I'm so sorry to hear about your Mum. My husband has also crossed the divide and is basically running out the last few weeks of life. The advice to get in touch with your GP urgently is a must. He or she will put your local palliative care team in touch with you and I promise you, and your Mum, that you will find them a refreshing change from hospital medicine! They have extensive experience in dealing with people like your Mum who are feeling poorly and angry and who don't want to be messed about with anymore. They deal with this every day and take a much calmer less intrusive and more caring approach for both your Mum and the family. They understand all the physical and psychological issues facing someone in this position and have more strategies than we do to help people cope.

It was such a relief when we entered the palliative care system as my husband was sick to the back teeth of the hospital system and like your Mum had lost all confidence in doctors. Our team are based at a local hospice but don't be put off by that word. They are there to help people live out their lives comfortably and with dignity.

I hope you get some help soon xx

[Thomasfam]

Thank you both for your words of support and encouragement. I wish you and your families all the best in dealing with this awful PC. I think I will give the nurses on here a call. We have the district nurse come in once a week just to check on mum and the hospice call to see if we need anything, but other than that left to our own devices with regards to diet. Having said that mum is also a proud lady, stubborn and reluctant to accept any outside help at the moment, this is something she can stay in control of and we have to respect that. It's just very difficult when we can see she dreads meal times, and eats because it's the only way she can keep surviving. Her strength of character has been an inspiration, not many people would have survived the bad treatment she has had. When mum was in hospital and being very sick, she was nil by mouth so on a drip for nutrition and fluid. Suffering acute kidney damage due to negligence of not being put on a drip for fluid overnight, something that I consider to be basic treatment. Luckily mums kidneys have recovered. There were a number of other issues minor in comparison to this, but nether the less all resulting in a delay in mums recovery, rendering her bedridden when she had been up and about prior to this. The result of this is that she was too frail to attend her oncology appointment and no other appointment has been offered as yet. I don't think mum wants chemo,even if it was an option, as had enough of being pulled around and would need another biopsy taken anyway as first one was inconclusive. So all in all this has led to a complete distrust in anything the medical profession tell her, and she just goes with her own gut instinct at what she feels is best for her.

[Guest]

Hi Thomasfam,

You are obviously doing everything you can for your Mum and yes, it is difficult for those looking on, no one will deny that. Keep speaking to the hospice team, tell them how you feel and how your Mum feels because they are there for you too. I'm not sure what your local team offer but do ask if they run a carers course or any alternative therapy which might help you even if your Mum isn't interested at present. In our case the hospice did have a course and it was really helpful and included finances, how carers can help manage pain, bits on exercise, alternative therapies, socialising, day patient and respite care, diet, bowels and a whole host of other stuff including end of life and what to expect and what help is available. Please do ask if you haven't already done so because the support is there for both your Mum and her carers.

M x

[Proud Wife]

Hello Thomasfam

Welcome to this forum. I hope you will find it as invaluable as I do.

Appetite is a massive problem for my hubby at the moment who is living off 3 bottles of ensure plus per day. The best advice I can give you is don't nag your mum to eat. I nagged my hubby terribly in the beginning and all it did was put him under pressure to eat. Has your Mum tried these meal replacements? Might be easier for her to take, rather than food that she's trying to force down?

Good luck and keep us posted.

All the best

PW