diet and confusion

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Hello, like the post from Evie about her mum, I too have major concerns about my mum's lack of appetite and also the effect this may be having on her mental health.  

Mum is 84 and I'm her daughter and sole carer, she lives with me and we don't get support from anyone else.

It has been very hard for her in the last few months, she neglected what she thought was an ulcer on her leg (and she's a former nurse!) for some time, when I finally saw it when she asked me to start helping with her personal care it was biopsied and found to be inoperable cancer.  I say inoperable in that it's too big and deep to remove. She's been "offered" the horrendous suggestion of amputation below the knee. They have ruled out radiology and chemotherapy as she is too frail - she is about 4 feet 10 and weighs around 7 stone or less.  So how they think she could cope with amputation i don't know! She has very little physical strength.  In the last few weeks, her appetite, always small, has dwindled to virtually nothing.  GP and dietitian prescribed various nutritional drinks and supplements but she can barely get them down. she is eating virtually no solid food and can't drink much.  

I have had to get the duty GP out to visit her the last two days as she has been confused, rambling and not making any sense.  They started her on a low dose of Mirtazapine (anti depressant) for her anxiety and depression (something she has never experienced before) and also in the hope it might stimulate her appetite. She took the first dose last night and we had the worst night we've experienced so far.  She was very tired, then got up and started wandering about in the middle of the night, thinking it was daytime and that I was her mother and also that I'd gone out of the flat and left her and she was looking for me.  It was pretty frightening to hear her saying to me I was her mum!! Something along those lines has never happened before but since this diagnosis she has been getting more confused and worried.  Often when she wakes from sleep that is the worst time for her confusion.  

So the GP came today and immediately discontinued the Mirtazapine after that one dose.  He also recommended she take less codeine than she's recently been prescribed for her leg pain as that is probably confusing her too! But then what does she take for pain relief?? Her vital signs were normal - blood pressure, oxygen levels etc but he did find a crackle in her chest and has prescribed antibiotics for a chest infection.  I'm really hoping some of the confusion is down to that.  Today she has slept most of the day and barely eaten. I woke her at 6pm and she was very confused not knowing where she was.  She could only say "we're back in England".  However, I got her to the bathroom and managed to wash her a bit, made her some tea, gave her first antibiotic and later managed to feed her half a bowl of thin milky porridge and she had some tea.  She was making a lot more sense after all that and was apologising to me about calling me her mum last night and saying she was so sorry I had to go through this.  It is breaking my heart, we are so close, it is just the two of us and I have barely slept in the last week and had a pounding heart every night through worry.  The GP has referred us to Macmillan nurses I hope that comes through quickly and they can offer advice and support.  We are in central York by the way. I tried to get some respite care organised through Helping Hands today but they were unable to offer anything apart from full time live in care (which we can't offer as we have a bedroom each, nowhere to put a carer) they don't have any capacity for respite care.  I am trying Home Instead tomorrow.  We probably wouldn't quality for any social care would we as mum has savings.  

I'm feeling desperate and like I'm drowning and I don't know where this will end. Please help. Sorry this post is so bloody long!!! Annabelle X

  • Hi Violet38 (Annabelle)

    Thanks for getting in touch with Macmillan Cancer Support and welcome to the online community.

    It sounds like an overwhelming situation at home for you and Mum.

    The feeling of uncertainty and of the unknown can be frightening.

    I’m happy to read the GP has referred Mum to the community Macmillan Team.

    This team can help support people at home and many people find this kind of support reassuring and invaluable to have in place. This team can also liaise with your Mum’s GP about any support or medication changes she may need going forward while at home.

    You mentioned you are reaching out to Home Instead today, however I wanted to highlight that there are different types of support available. So, you don’t need to struggle on your own.  It can take time to get all this support in place. So please call the GP back today and ask for further social support.

    I would also encourage you to discuss your Mum’s pain control further with the GP, they can assess her and ask some questions about her pain. This way your Mum should get the best pain killers for her individual situation.

    Supporting someone with a cancer can be rewarding, but it can be tough at times too. So, it’s equally important that you look after yourself and get support too.

    There is further information and support available through our online community especially the family and friends groups.

    You can find local Macmillan Support Centres here.

    Maggie’s also offer some emotional advice and online courses that can help anyone affected with cancer.

    If your Mum’s condition changes or deteriorates then please don’t hesitate to make contact will GP /111.

    It may also be helpful giving one of our nurses a call directly to talk things over. We are always happy to take the time to listen and advise when and if you may need to talk.

    We are open 7 days a week from 8am till 8pm. Our number is 0808 808 0000.

    I hope this helps.

    Please don’t hesitate to get back in touch if you have any more questions.

    Annemarie

    Cancer Information Nurse Specialist 

    Ref: HC

  • Hi Annemarie thank you so much for your reply.

    Today I have phoned GP this morning and asked them to put out a call to community response care team.  I have also phoned the adult social care team at the council and they are arranging an intensive assessment but don't know when this will be. They are chasing up with GP re the community response team. District nurse coming later today to do bloods, we need to check urine as she currently has chest infection and has started antibiotics.  She may have urine infection too as last few days with the upset and changes in meds she has also been incontinent from no2.  so i feel she might have got an infection. Oh God it is so awful. she doesn't know where she is, where she's living, and what's happened to her leg she can't process it,  I don't know whether to call an ambulance.  I think she thinks i'm a live in care worker, she mentioned something about my hours!!   Annabelle

  •  Dear

    Thankyou for getting back in touch with Macmillan Cancer Support and the Online Community again. My name is Sue and I’m one of the information nurses on the Support line.

    This sounds like an extremely difficult and distressing situation for you and your mum and you have done the right thing in speaking to mum’s GP and adult social care team. Although it sounds like support is being arranged to be put in place for your mum, through the community response team and district nurses, however, because of the symptoms your mum is struggling with, it’s important that she receives an urgent medical assessment to get the right help, as soon as possible.

    Because of the severity of your mum’s symptoms, which may be caused by an infection, she may require more intensive treatment with intravenous antibiotics at the hospital.

    You’ve also mentioned your mum has suffered with new faecal incontinence. Whilst we can’t diagnose and do not want to alarm you, we need to make you aware this can be a symptom of something called metastatic spinal cord compression. This happens when the cancer grows into the bones of the spine or tissues and presses on the spinal cord. It is a medical emergency and if left untreated, this can lead to permanent damage. There are treatments available to help, so it’s imperative for your mum to be medically assessed as soon as possible.

    Because of what’s happening with your mum’s symptoms, we would advise for you to call 999 for an ambulance. They will be able to medically assess mum as to the most appropriate form of treatment she needs and support you both.

     

    We hope this information is helpful

    Please don’t hesitate in getting back in touch for further support

    Best wishes

    Sue

    Cancer Information Nurse Specialist

    Ref: SMJ

    Sue Cancer Information Nurse Specialist