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.