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Floofmom

Hello Birdv759, my mum shows little interest in food but the only thing she has said she has gone off because it doesn't taste right anymore is cups of tea and she always loved a good cuppa.  She is now drinking mainly Ribena.  She does eat every day but only little portions and only what she thinks she can stomach, some things she used to like she just doesn't fancy at all now.  Good luck x

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Birdy759

We are fast running out of options on the what still tastes OK front...the last 3 days have boiled down to just fresh fruit...milk was ok, but now isn't...water is still ok.

Food used to be my Mam's passion...she was an amazing cook and baker.

I have tried adding complan to milk and the nutritional drinks prescribed by the nurse...but these are no longer a possibility anymore. 

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Floofmom

Hello Birdv759, my mum shows little interest in food but the only thing she has said she has gone off because it doesn't taste right anymore is cups of tea and she always loved a good cuppa.  She is now drinking mainly Ribena.  She does eat every day but only little portions and only what she thinks she can stomach, some things she used to like she just doesn't fancy at all now.  Good luck x

 

 

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Floofmom

Hi Birdv759, apologies, I don't know how I have posted my previous reply again!?

Anyway, I just wanted to say that I am really sorry that your mum is finding it a struggle enjoy food.  It must be miserable for her and very worrying for you.  Will she have some jelly?  I know it's mainly water but at least some sugar in it.  I don't know what to suggest, I am sure you will have been racking your brains to find something she fancies.  My mum went through a stage of wanting "flat chips" which are sliced up cooked potatoes, fried.  Have you asked the nurse for suggestions?  Perhaps increasing the Creon?

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Birdy759

Hi Floofmom, tried jelly with tinned fruit in it this morning and it went down a treat. 👍🏻

It is a bit like a torture because as I run out of options I feel like I am starving her to death as I can't find anything she wants.... we are back on the Nystain mouth drops to try to treat the thrush as this could be part of the problem. 

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Floofmom

Oh I do hope the thrush treatment helps.  How distressing for you both. Let us know if you find anything else that she likes.  What about a nice ripe melon cut into small chunks? Xx

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Birdy759

She was very into melon for a few days, but off it now. That's the way it seems to go. Had a tiny piece of steak today, first savory item in a week. Who knows what tomorrow will bring .

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Floofmom

Oh that's great that she had something savoury with a bit of protein in.  Everyday I phone my parents on my way home from work with my daughter and we always ask "What did you have for lunch?" Yesterday it was scrambled egg and some runner beans fresh from the garden.  Bear in mind that the portion size would probably be saucer rather than plate.  Recently she has been liking the rotisserie chicken from the counter at the supermarket.  That's great because it's already cooked so less work for my Dad.  They only get a small bit and it lasts them a while.  She did enjoy small pieces of steak for a while but found that much as she loved it, she seemed to get very sick afterwards so perhaps it was too rich for her.  It can be difficult to find something that they find appetising.

On a positive note, my mum's bath chair thing arrived and they tried it out yesterday.  Previously I had bought a cushioned bath mat from Amazon and that was a huge help (even the nurses were impressed!).  I haven't seen it but it is a battery operated inflatable thing that you sit on, it deflates and lowers you into the bath then when you are ready to come out you inflate it and rise up again.  That will be a big help as she loves a bath but it's difficult for her now to get in and out.  Also she had a fall last week and face-planted the floor, so anything that benefits her safety is good.  How is your mum doing mobility-wise?

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Birdy759

Up untill she had a stroke 3 weeks ago she could manage out of bed, to the bathroom, wash herself and build up to a weekly bath, was very out of breath doing so and would often return to bed a blueish grey colour.. since suffering a stroke she is bed bound and can't find her words very well.. it is something of a guessing game trying to work out what she is trying to say...I thought before the stroke was hard, but since it has been much much worse. Now she is trapped in her body that doesn't work. I have found it quite traumatic to witness this turn of events and I know my Mam is gone into a deep depression. She has sort of given up and I can imagine I would do the same...I just try to take each day as it comes as you never know what will come next.

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Floofmom

That sounds really hard to witness.  You are doing a great job just being there.  Do you manage to get any 'you time'?  How do you cope with everything?  My Dad tries to go out for a short walk or pops round to the bowls club for half an hour to chat to people.  I am sorry to hear that your mum is suffering with depression.  I was going to ask if she has spoken to the nurses about it but if she is struggling with her speech that would be very difficult, still they might be able to just sit and chat with her, might bring her a bit of comfort.  Sometimes it helps for someone with no emotional connection to be there for them to talk to.  My Mum doesn't seem to be depressed but when I spoke with my Dad today he said the breathlessness is getting much worse and she is finding it distressing (understandable).

I hope you are doing ok.  Nothing can ever prepare someone for this.  You are right, you do have to take each day as it comes, with all the ups and downs.  Just know that you are doing the best you can xx

 

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Birdy759

When I get a half hour , or hour or 2  when Mam is sleeping and I have ' me time', I often just do something very mundane to try and switch off my brain. I am coping just now as I have help and support from my brother, but he has to return home soon, then my other half will come and stay for a while, but the periods between when I will be alone, I have no idea how I will cope. 

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Floofmom

It sounds like you are struggling a bit.  Is there anyone you can talk to there?  The nurses are supposed to be able to support family members too, or perhaps you may want to phone the hotline on this website.  It's ok not to be ok as they say.  Or do you worry that if you let your guard down a little then everything will come tumbling out?  We put so much pressure on ourselves trying to appear like everything is ok and yes, I am the world's worst!  I think I have got very good at distracting myself so that I don't have to think about the inevitable.

Yesterday my mum was given lorazepam to help with the breathlessness.  It doesn't really work like that.  It's an anti anxiety drug, a sedative so she is supposed to relax a bit and her breathing should improve because she is more relaxed.  It just about knocked her out!  Nurse is halving the dose.

Last night she fell twice in the night, broke a bedside lamp and my Dad struggled to get her up off the floor.  She's a bit naughty because she is meant to be in the hospital bed downstairs where it is cooler but instead keeps going upstairs because she prefers to do her teeth upstairs!  When I asked why she fell she said she should really be using her walking frame but doesn't like it!  She's a determined little thing (bit like me).  I should think about going down again a a couple of weeks but with BA cancelling flights and all the train strikes I will have to drive by myself and it's such a long way.  It's only 2 weeks since we were there and I am beginning to hate driving that road!

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Birdy759

Gosh your Mum needs to he careful. Last thing she needs is a broken bone.

I have quite a good support system, but the actual care work , aside from the carers and the odd waking night nurse, lies with me. I do worry I won't can maintain it and my Mam will have to go to a nursing home or hospice.. but I'm trying not to worry about what ifs as it uses up energy which I am getting short of. 

Hope you can get down, but your right, current public transport is so unreliable at the moment.  Stress you can do with out.

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Dear Birdy759,

 

I am sorry to hear this is such a difficult time for you in supporting both Mum and Dad at this time, in addition to looking after yourself too. As Floofmom suggested our support line service is also available for family members, loved ones. If either yourself or any of your family wish to reach out, you are all able to have individual and confidential conversations with the nurses on our support line.

 

There is a free call number 0808 801 0707, the service is open Mon-Friday 9am-4pm if this might be helpful.

 

Thinking of you,

 

Administrator

Pancreatic Cancer UK

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