HI Emya,

I am so sorry to hear about your mum. It is so upsetting for you to see your mum unable to eat solids, especially when you notice her failing before your very eyes. Unfortunately, this often happens towards the end of life. There are various build up drinks and puddings available on prescription. Have you spoken to the district nurses or her doctor about these? I am surprised that you haven't been given these already, but do please ask them straight away. It doesn't sound as if you can wait for the dietician and s'he will only prescribe the same products. However, do press for an appointment and impress that it is urgent.

I agree that some of these are not very pleasant to taste, but we found that my mother-in-law found one flavour that she liked and we only got that flavour prescribed. They are usually prescribed in a tray of assorted flavours. Perhaps you could try one of these, to find out what your mum likes, then order only the ones that she favours?

If you Google build up foods and drinks, you will find a number of different products. Some that spring to mind are Ensure, Complan, Nurishment,  and Meritene. These manufacturers provide soups and drinks.

You can get individually wrapped lemon flavoured cotton buds to help moisten your mum's lips - again these are available on prescription.

I hope that you get some help from your mum's care team soon. Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi

Thank you for your reply, this has been a help, I had to call 111 today as the GP surgery was closed for staff trying, no number was set up for out of hours, I called the pallective team and they were very helpful too, I've not been able to get the pallective community nurse onboard yet, staffing issues, I have had a nems Dr to write a prescription for the drinks but none in stock and missed the ordering cut off, fingers crossed they get them tomorrow or Saturday. I did feel very sad to be told today didn't warrant a emergency call out  I felt as my mum is starving it did,  learnt alot today, I do think it's end of life care she needs but my mum is a proud woman and has declined the bed, commode etc. 

Imy daughter is caring for her throughout the day whilst I'm at work. I understand that medically they only treat this in hospital and not home but she really dosnt want to die in hospital or attend a hospice. 

Shes told me her wishes and I have to honour them . I really thought we would have all the professionals on board but they keep passing one and another off. 

I've again got call a gp tomorrow to come and see her at home to up her medication in the driver, call into a hospice to collect bile bags as they don't offer this on prescription.

Follow up the wheelchair referral form and go to work for my night shift. Its mad.

Thanks again I will ask too for lemon buds that's a new one that no one has mentioned.

All the best xx

Emma x

Hi Emma,

I am appalled that your mum's GP wouldn't come out to see her today. I expect that s/he sees this as normal at end of life. You usually find that people don't want to eat, before they stop drinking.

It is a pity that your mum is too proud to accept a bed and commode, as this would be much easier for you and your daughter. Most people want to die at home and your mum should have been put in touch with a community palliative care nurse before she left hospital. Would she consider having carers coming in throughout the day? My mother-in-law was bedbound for 6 years, and my 97 year old father-in-law did his best to look after her at home. In the last year, we persuaded him to have carers coming in 4 times a day. He found this an intrusion in a small flat, but he appreciated that it took a lot of pressure off him and us.

It seems ridiculous that you have to run around after bile bags, when your mum is so ill. Is there no way that these can be delivered to you? I am sorry to hear that you are having to chase up her wheelchair referral too. It sounds as if you have been left high and dry. We were too initially, I eventually got a social worker involved and she worked miracles. We saw her on the Friday afternoon and she had everything in place by the Monday. This included bed, draw sheet, medication, lemon buds, emollient creams, Ensure drinks and yoghurts, dressings for her heel and leg ulcers, cream for these,  inflatable leg and heel rests to reduce ulceration, incontinence pads(including a regular delivery schedule from there on in) and carers and nurses, who appeared with an end of life pack. She even visited mum's GP after she saw us, to insist that he paid her a visit, as the practice kept telling us, that he didn't do house calls - it really is amazing what one can get done in a day, when someone puts their mind to it!

We found the lemon buds helpful to clean out that "odd dirty taste" in the mouth. You can use them to freshen the interior of the mouth or just to moisturise the lips and there's no limit on how frequently you use them.

I hope that you manage to get the medication for her driver increased tomorrow.

Do please keep in touch and let us know how you get on. As I said before, we are always here for you.

Kind regards,

Jolamine xx