Sharing our experience so far

[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

[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. 

[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

 

 

[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?

[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. 

[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

[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 .

[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?

[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.

[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

 

[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. 

[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!

[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.

[Support Team]

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

[Birdy759]

Thank you, I will keep the number handy. 

[Floofmom]

Been quiet for a while as we seem to have plateaued for a bit again.  The nurses have been going in to see my mum every day but my parents have now been told this should stop as it won't be funded.  The hospice nurses are only available for short periods and they have been visiting for the last 4 weeks.  A District Nurse assessed my mum and decided that she doesn't need extra care as she is not fast track because she has a life expectancy of more than 3 months!  That's news to us.  She was at deaths door in June.  I mean, it's great, but I honestly don't think it's realistic.  She is struggling terribly to breathe, not helped by the hot weather and been extremely anxious over the last few days about how it will end, will she suffer etc.  She's terrified of not being able to breathe.  The GP went to see her tonight and is upping her anxiety medication and has reassured her that she will not suffer at the end.  To be honest she is not really needing the nurses daily but a twice a week check over would be good.  She's still trying to be independent but her mobility is declining.  My Dad took the GO aside and asked him about this "3 months life expectancy" and he said he would have a word with the district nurse who assessed her.  I think he was a bit surprised too.  Plus at this point, given her lung condition it would be awful if she got a cold or cough.  I have to say though that my parents have been very pleased with the support from the health professionals.  It's helping my Dad a lot to have someone popping in just to check on things and gives him a chance to discuss any worries.  

[Birdy759]

Perhaps you could speak to your mum's palliative care nurse about the outside support your getting. Btw, Has your dad applied for attendance allowance for your mum? 

[Floofmom]

Hello Birdv759,. How are you?  How is your Mum doing?  Yes my mum has attendance allowance so can use that to pay for care if necessary.  I think things are getting sorted.  I get a bit confused as my Dad tells me they have hospice nurses, district nurses, palliative care, GP, physiotherapy and something else all popping in and out.....I lose track!  My Dad has to go for a nose operation in a few weeks so he is arranging for a nurse to stay with my Mum.  He is also having tests on his heart so things are a bit stressful for him.  We are going to visit in a few weeks time.  It's difficult though because we want to see my Mum but when we visit she does too much and then has a decline.  She can't help it.  It's her nature.  I think we won't tell her in advance and limit the visits to an hour a day.  Do you still have your brother with you? Xx

[Birdy759]

That's good he gets AA...I was told that if the prognosis is not good the gp or palliative nurse issue a ...I think its called, a ds1500 certificate to speed up the claim and minimise the paper work...and I was thinking if this was the case with your mum then how can she be denied all the help she can get.

At this end, we are just getting by best we can, day by day. I get overwhelmed if I think too far down the line.

My brother has had to leave buy my husband has joined me now, so that a help. X

[Floofmom]

My poor Dad had a frustrating day today.  He has his own medical problems that he is trying to deal with and attend appointments but District Nurse came to assess my mum just as he had to go to his appointment and as he was leaving he heard my mum tell her that she doesn't need carers and they can't be trusted!   Where on earth that came from I don't know!  He is battling to get her more care and she has suddenly turned against it.  He isn't sleeping well and is up and down all night as well with my mum.  

I wonder if this is a state of confusion or that she is worried about paying for care (it wouldn't be an issue).

The extra anxiety meds are making her very sleepy but are helping with the anxiety around breathlessness.  She's not sure whether to cut back or continue with them.

It's a hard call to make.

 

[Floofmom]

Yesterday she was very agitated and restless.  Today extremely sleepy, even dropping off when nurse was speaking to her.  The medication ordered to reduce saliva has not arrived at the chemist yet, that's been several days now and my Dad makes the trip each day to see if it's there.  It's a bit frustrating.  He is hoping to organise a carer for when he goes into hospital for his operation.  He should only be in one night but my mum needs 24 hour care really.  He sounds exhausted.  I am going back down in 3 weeks for her birthday.

[Floofmom]

Well, that didn't go according to plan!  Surgeon contacted my sister to say that they couldn't complete my Dad's operation as when they opened him up they found "something sinister".  Took biopsy and waiting for results and possible treatment plan.  That's going to be extremely difficult for him looking after my Mum whilst going through treatment himself.  Will have to wait to see what they say.  All this happened on Thursday just after announcement about the Queen so I was an emotional wreck.  Going down to see them next week.

[Winifred]

Hi Foofman, 

I haven’t posted on here before but I have been following your journey with your mum. How is she doing?
I’m so sorry to hear about your Dad’s news. I hope you hear about the biopsies soon. What a challenging time you’re having. 
Last week was very overwhelming and triggering. I felt it too. My Dad passed away from PC in July but I have yet to share our story. 

[Floofmom]

Hi Winifred, I am so sorry to hear about your Dad.  I can only imagine how emotional the Queen's passing was for you.  Part of me was thinking "I should be watching history unfolding" but I just couldn't bring myself to watch the TV coverage at all.  We always joked that my mum is very like the Queen.  My Grandma was very like the Queen Mother.  Not so posh or rich though!  I found it very emotional. We travelled down to see my parents yesterday.  My mum is now very frail.  Her mind is very with it except when she is very tired.  She gets tired very easily now so although our journey took 12 hours to get here we just stayed an hour and then left.  We are here for 3 days.  The nurses are concerned that she may have deep vein thrombosis in her leg.  It is swollen and hard.  She has an appointment for an ultrasound on it in a few days time.  My Dad has an appointment with the same day with the consultant and I will go with him.  He has been told it is cancer but treatable.  He will probably have to travel to another town about 25 miles away several times a week for treatment so that is going to be difficult.  We will see what they say but I will need to speak to my sister and see how we can make sure that my mum will be looked after and how my dad will be during treatment.  We will have to have a few options and see how things pan out I think.

[Floofmom]

Mum's scan showed that it wasn't a DVT, but both legs were swollen and they would only scan one leg as that was all that was on the request form!  Jobsworth?

Things not looking great for my Dad.  Might be quite aggressive.  Will take one day at a time.

Mum is starting to look yellow again, but given her frailty and the sleepiness and the fluid in her legs, I think they will say that there is not a lot they can do.  She is also saying that she is finding it a struggle to swallow her tablets.