Sharing our experience so far

[Floofmom]

I am sad to say that things seem to be taking a turn for the worse.  My mum had been put onto slow release morphine, one in the morning and one at night, but when I phoned home today (I speak to them most days) my Dad said she was in so much pain that he phoned palliative care and they have doubled the morphine to two in the morning and two at night.  He also said that he has been forbidden by my mum to tell me the full story as it might affect my holiday that I am due to go on in 2 days time. My sister will be holding the fort while I am away, as I did for her earlier in the year.  I feel completely helpless if I am honest.

[Floofmom]

Whilst I was away my mum was put into hospital for pain management (but wouldn't let anyone tell me!).  She is now on a syringe driver.  My Dad says this has really helped and although she was drowsy earlier today has perked up and eaten something too.  We don't know when she will be allowed out yet.  I will arrange to go down to see her in the next few days.

[Lornacath]

Hi Floofmom, I’m so sorry to hear your mum is suffering so much pain, I really hope the hospital are able to make her much more comfortable. It must be so hard on your dad knowing how much pain she is in. Hopefully when you are with them both it will help, sending lots of love x

[Floofmom]

I am going tomorrow.  It's the hospice that she's in.  Yesterday there was talk about getting her stabilised and off the string driver then getting assessed for possible going home.  Today she has a collapsed lung with the other lung starting to collapse. They are thinking of draining fluid off and will discuss it on Monday.  My mum does not seem keen on the idea.

[Floofmom]

Update - she's very tired, hardly eating and quite breathless.  Has been very unsure about whether to give the chest drain a go and the nurse today said it may help the breathing a bit or it might make things worse.  Doctor will visit tomorrow and mum will say yes or no then.

It's difficult as they talk about "when you go home" but there's no way my Dad could provide the level of care that she needs now.  I gather they will assess her needs and organise care if needed but I think she is probably in the best place to get everything that she needs.

It's hard seeing someone you love going through this.  I have to say that the hospice staff seem to be excellent.

[Lornacath]

Hi, it so difficult to find the words to give you any comfort right now. I’ve just been through it and still feel traumatised seeing my mum in so much pain. Your mum I hope is receiving all the best care possible in the hospice and giving you all lots of support too. This disease is heartbreaking, just one hurdle after the other. 

I’m glad you are with your mum and dad, being together is the most important thing right now, sending you all lots of love xxx

[Floofmom]

Thanks Lornacath.  The update is that she had the procedure done yesterday and they drained a litre of fluid from the collapsed lung.  They didn't want to go any further.  She is not sure yet if it has helped with the breathlessness but my Dad said she is eating a little and seems a little brighter.  Hospice staff wondering if she might go home for now but would need a lot of help.  I am back home again but preparing to go down again at the drop of a hat.

How are you and your family?

[Lornacath]

My goodness, how could there be that much fluid in her lung, what an ordeal for your poor mum on top of everything else. You must be so conflicted being so far away, it must be so difficult for you too.

I so hope your mum is more comfortable now and they have all her pain medication sorted that will be a major benefit being in the hospice having specialist care on tap. It will be a lot harder at home, I still feel traumatised by what happened during my mums last few days. I wish I didn’t know what you are going through and have yet to go through, this is a club none of us want to be a part of. Sending you lots of love x

[Floofmom]

Thanks Lornacath.  So, a little positive news (for once!).  I know that people on this journey check these posts and I want to just share a little positivity.  My mum has been in the hospice for two and a half weeks now and they have weaned her off the syringe driver.  I was really surprised.  I thought once on that it was pretty much the case that you were on it until the end, but no, they have weaned her off it, put her back onto the tablets and she went home for a few hours today. 

Now, I know, the inevitable will happen, but the fact is she got to go home and enjoy some time with my Dad and my sister, washed her hair, had a snooze on the sofa etc.  Then she went back to the hospice later this afternoon.

I believe that the plan is to do this for a few days with the hope of getting her home full time for a while.  I hope they discuss arrangements with my Dad as he will need some support for this to happen.  

I think the the to keep in mind is "one day at a time".

[Lornacath]

Hi, that is wonderful to hear, and your right its something I haven’t heard before, that patients can be weaned off the driver. I am sure this information will give others on this forum a little hope that it doesn’t always mean the end to life. 
Those few hours must have felt incredible for your mum and family, I hope the plan goes well and your mum can be home with your dad full time with all the support he needs. Thinking of you all and sending love x

[Borobi]

Floofman, I’m sure the hospice will discuss the support your dad will need if your mum goes home. They set up 3 visits a day from carers when my husband came home (I got them to reduce it to 1 as I really didn’t need 3), 2 visits from  district nurses, visits every couple of days from a hospice nurse and telephone support 24 hours a day. It was reassuring knowing if you were struggling at 3am there was someone you could speak to & if needed they’d send a Marie Curie Nurse out. I couldn’t have asked for better support and it was good to have my husband home. 

[Floofmom]

Thanks.  It's nice to hear people's experiences as it's all new to us.  She's been home for a few hours 3 days running and returning in the late afternoon.  I think that's a great idea and didn't even know it was something they could do.  I think there is a shortage of beds so if they can get her to be at home safely for a bit longer then it's good all round.  

My Dad reports that she is eating much better too.  When I saw her last week I really thought this was final stage as she was barely eating or drinking.  Whether removing the fluid from the lung helped (she certainly seemed a lot brighter afterwards) or spending time at home, I don't know.  I am just grateful for each day and the lovely hospice doctors and nurses.

It sounds like you had lots of support.  Hopefully we will be the same.   My mum was told that Marie Curie aren't really in her area (I thought they were all over) but she has a Marie Curie contact at the hospital who can help with admin but not care stuff.  I think it will be down to the hospice staff and district nurses.

Best wishes to you.

[Floofmom]

Mum is still at home and managing with tablets for now.  The last couple of days she has been struggling with nausea.  She has to take 7 tablets in the morning, 5 at lunchtime, I can't remember how many at tea time, morphine (liquid) twice in the day if she needs it, as well as insulin injections and Creon!  My parents were really disappointed that Boots have stopped doing the daily tablet dispenser packs just when they need them.  The nurse has given VERY clear instructions on what tablet is for when, with written description even including shape, size, manufacturers so hopefully we won't see any mix ups but it makes me wonder.  My parents are in their 80s but fairly with-,it mentally.  How would someone on their own cope?

Anyway, we are thankful to be on a plateau again.  I am going down at the end of next week.  Trouble with these plateaus is that you are just always waiting for the next sudden dip on the PC rollercoaster.

[Floofmom]

Things going along not too badly at the moment.  We are heading down to see them this weekend again.  My Dad is worried about my Mum falling down the stairs in the night as she is very unsteady on her feet and the bathroom is at the top of the stairs.  I suggested getting a Stairgate but my daughter wonders if a commode might be best.  Trouble is my mum is very private and although I think the commode might be the best option I don't know if she would be willing to use it.

She's very breathless now but that's not surprising given the fact that she only has one working lung and that's only at 25 percent.  I think the palliative care nurse is due next week so hopefully they will check her over thoroughly and see if she needs oxygen.

She is enjoying being at home again and had a little treat this week when my Dad bought a small deep fat fryer.  Apparently she has been craving some homemade chips.  She only had a couple but she really enjoyed them.

[rogs]

Good that she enjoyed  the chips! ... Reminded me of a time during my own wife's  illness when, not having eaten anything much for days, she suddenly announced she wanted fish and chips - from the shop!.

Off I went to try an locate a chip shop at whatever odd time it was. She only managed a few, but she did enjoy them...

 

I think you may need to insist on the commode. It makes sense. No point in making unnecessary trips (no pun intended) upstairs to the bathroom.

Like your mum, both my wife - and indeed her own mother before her - were very reluctant to start using a commode.

Once the initial embarrassment had been overcome, it soon became obvious that it made sense. 

Not very nice of course, but sensible. The last thing your mum needs at the moment is a broken hip!!

[Floofmom]

Very true Roas

Big shout out to you and all the other carers out there who go the extra mile to give a little enjoyment to the PC patients.  I have watched my Dad really step up to the plate to do all the little things that might make my Mum more comfortable or encourage her to eat.  This week he went to her hairdresser and begged for an appointment as she wanted her hair done.

I have brought up the subject of the commode and will leave them to ponder over it, then I can discuss properly with them when I see them at the weekend.

[Floofmom]

I have been visiting my parents for a few days (staying in a hotel so they don't have any extra work).  Mum seems much better than when I saw her last but bear in mind that last time I saw her she was in the hospice and waiting to have fluid drained from a lung.  She is extremely thin, although my Dad weighs her daily and reports that actually she has put on a tiny amount of weight since coming out of the hospice and is stable.  She has been off the syringe driver for about 3 weeks and is coping with the tablet regime (although that is a LOT of tablets) and having the occasional spoon of morphine.  She is very tired but still has her sense of humour and determination.  We noticed she had disappeared a couple of times and found her ironing or peeling potatoes.  She likes to do it " because I can".  She wants to be able to do stuff.

The main issue at the moment is her breathing with only the one lung and that only at 25 percent.  The current heatwave doesn't help at all and she sometimes has to lie down with a fan blowing at her.  Having a fan and trying to relax really helps with breathlessness.

The nurses came last week and have organised a walking frame and a chair for the shower, both of which have arrived already and she should get a kind of mattress topper to help her sleep as she can't get comfortable.

So, at the moment I would say she is in one of her stable phases.  My main concern is if she catches covid or a cold at this point as her lungs simply would not cope.

[Floofmom]

My parents have been trying to prepare for the coming heatwave but in the last 24 hours my mum seems to not be doing so great.  Dad phoned the nurses today and a palliative care nurse came round.  They have ordered a hospital bed and commode, will be delivered today and put into a room downstairs where it is cooler and more accessible.  Also nurses daily to help with washing have been arranged.  I asked my Dad how she felt about it but he said she's too tired to care.

[Floofmom]

Things continuing to go downhill now.  My Dad is struggling to cope, my mum is trying to be as independent as possible but not managing.  He thinks she might need to go into the hospice again.  The pain is under control but it is now extreme fatigue and not being able to move about.  I asked if she has been eating and she is still managing a small lunch so that's something at least.  I know we can expect more and more fatigue as we near the end.  I think what my Dad is finding hard is trying to assist with toileting, simply from the manual handling perspective and again, trying to get her out of the bath was silly and potentially dangerous at this point.  She has a chair for the shower but she loves a bath.  I have suggested asking the hospice if she can use their bath facilities even if there isn't a place there for her at the moment.  At least she now has the hospital bed and commode and today was shown how to use it.  Fingers crossed she gives it a go as another worry is that she makes it to the bathroom and falls over behind a locked door.  Sorry, it might sound like she is being awkward.  She's really not, she's "fiercely independent" which is probably how she has got this far - 7 months since diagnosis with only palliative care, bless her.

[westlondongirl]

Hi Floofman,  have the NHS not offered you carers? Where I live in Hammersmith my mum was offered four visits a day.

In regards to the bathroom we changed the lock so it was a twist one which could be opened from the outside.

Sadly my mum had strokes which ended with her being bedridden. I miss her every day x

[Leah256]

Hi Floofman, I’m in a very similar situation with my mum. I posted a while ago asking whether my mum would be healthy enough for chemo - in the end, she had two treatments, ending in the hospital each time and was told after the second she would not be able tolerate any more. That was about a month ago. 
 

My mum has lost so much weight over the four months since diagnosis, she barely eats or drinks, has extreme nausea (now mostly controlled with daily injections) however, mentally, she is clear headed and other than fatigue says she feels fine in herself. She too is fiercely independent and was adamant about not staying in bed all day. Last week, she fell/passed out trying to get to bed, luckily my sister was right behind her and helped her to the floor so she wasn’t hurt, but it did trigger all of us realising she needed a lot more help.  
 

Now, she is in a hospital bed, with carers coming four times a day, organised by the hospice. Up to this point, my sister and I have been the only ones looking after her. It has been a huge relief to have so much help, mainly to know she is being cared for properly. At first, she tried to use the commode, but her mobility continued to decline. We tried a bed pan next, resulting in a bed sore, and now she has to use pads (nappies). Again, she really didn’t want to, but said actually it was a massive relief not to wrestle with the bedpan and risk of mess. 
 

When she declines more, we’ve been told we can have a ‘waking night’ carer who will stay throughout the night and another carer, ‘a long sit’ who will stay during the day. We also have weekly visits from the nurse at the hospice to assess how she is doing and request any new medication from the GP, plus a physio who can order equipment. The district nurses also comes every day for the nausea injections and are able to treat or diagnose other symptoms that have come up. 

I hope you and your dad get more help quickly - even though it was the last thing my mum wanted, it has taken so much struggle and suffering away. My mum seems so much more content and we are able to actually spend time with her than rushing about and worrying how to look after her. 

 

 

[Floofmom]

Hi Westlondongirl.  Thanks for your reply. I am sorry to hear about your mum.  Yes my mum is having carers in to help wash and dress her but determinedly does it herself before they come!   They are not really seeing her at her lowest points.  I think it is a huge relief to my Dad to know that they are coming each day though.  Great idea about the bathroom door lock!  Also another carer comes at 3pm to check up on things. My Dad thinks that's possibly not necessary but leaving it as it is just now.  I think it's good for him to have someone in to talk to.

[Floofmom]

Hi Leah 256, many thanks for your reply.  It sounds like you and your family are in a similar situation to mine.  I think it is a blessing having the carers in.  My mum still being fiercely independent but I think them coming in really helps my Dad.  He was also offered a waking carer recently, which he declined as he said he didn't feel it was necessary yet.  I spoke to her just now (we live at opposite ends of the country) and she says she is just so exhausted and that everything takes so much effort. Dad says she falls asleep in her food sometimes.  He also says she has started getting swollen legs so will speak to nurses about that today.

Finally she has been using the commode, but I will bear in mind about the pads in case she is too exhausted to get out of bed.  She now has a hospital bed downstairs.  My Dad is worried that she wants to spend her final days in the hospice and from what the nurses are saying there may not be availability. 

I hope your mum is comfortable.  It's good that some of the pressure is off you now for the carer side of things.  Will keep you in my thoughts going forward.

[Birdy759]

Hello everyone,

Just reading this thread and can relate to all of it with what my Mam is going through just now.

I am grateful to folk that contribute to these forum threads as it really helps to hear people's stories. Has anyone had any experience of food tasting bad/ off / rancid? This is a big issue just now for my Mam and putting her off eating which she was doing little of anyhow. 

[Birdy759]

Hello everyone,

Just reading this thread and can relate to all of it with what my Mam is going through just now.

I am grateful to folk that contribute to these forum threads as it really helps to hear people's stories. Has anyone had any experience of food tasting bad/ off / rancid? This is a big issue just now for my Mam and putting her off eating which she was doing little of anyhow.