Palliative Care update pg 7

[Princess Ariel]

Thank you all so much for the replies and for sharing your very personal experiences, they have really helped and comforted me.
Unfortunately I woke up this morning to a very distressed phone call from my sister. My mum had phoned her in a very upset state saying she had an awful night, was in excruciating pain and had a heavy bleed and loose stools. My sister doesn’t think she and dad will realistically cope if something like this happens when mum is at home. Mum is also very delirious, she is confused and disoriented and seems to be hallucinating. She doesn’t seem to remember the meeting yesterday and was talking about going into a hospice again today but stated that she doesn’t want to be there for ‘6-9 months’ my sister didn’t have the heart to tell her she most likely hasn’t got this long left.
I have rang the ward this morning, they wouldn’t tell me much just that the dr was with her because of her bad night, I got the impression they just wanted me off the phone to be honest. They are supposed to be ringing me back but haven’t so far and my dad has been unable to get hold of my mum.

[pinkbelle]

So Sorry Princess Ariel, so many of us have walked this path and have empathy for you and your family.
You can only act on what you know when you know it. Take comfort in the fact that your Mum is in the right place for now and will be getting the help she needs. I really hope they can get the pain under control and her more comfortable.
From my experience, that allowed us all time to breath, and prepare ourselves the best we could for what was ahead.

[MargaretMouse]

Just wanted to say I’m thinking of you and sending hugs.

[Princess Ariel]

Just thought I would give a quick update on Mum’s condition. She was diagnosed with high calcium levels at the end of last week and had IV therapy over the weekend. She had a really good day on Monday and was transferred to an inpatient hospice. My sister was questioning whether she should have had Mum at home due to how bright she seemed but I kept trying to reinforce that this was most likely due to the IV therapy she had received.
Lo and behold yesterday Mum was really unwell, she was complaining of pain and saying her catheter felt blocked. The nurses attempted to flush the catheter but this had no effect so removed it and tried to insert a new one. Due to the tumours they couldn’t insert one, even two of the dr’s tried, at this point Mum was screaming in pain and was agitated and delirious. She was transferred to A&E and the hospice dr requested a suprapubic catheter instead of an indwelling one.
Unfortunately the specialist said she couldn’t put in a suprapubic catheter due to the risk of haemorrhage because of the amount of tumours mum has but did manage to put in another indwelling. She advised that because of all the tumours in that area this is likely to happen again.
Mum was transferred back to the hospice last night and slept until this afternoon, she has woken up in terrible pain which the staff have struggled to manage so she is now having a syringe driver for her meds. The doctor at the hospice has said mum likely has less than a month left now.
Hopefully the syringe driver will help with the pain and mum will be able to spend her final weeks a bit more comfortable.

[Tinkerbell]

There are no words. My thoughts are with you and your family at this very difficult time.

[parisdisneyfan]

So very sorry to hear this. It is awful that your mum is in so much pain and for you to have to see this. I hope that the hospice can get it under control for her and you.
Big hugs for you and stay strong but remember to take time for you as well xxxx

[THE WIZARD]

Im so so sorry Ariel I have been thru what your going thru with both my mum and late husband and know how devastating it is. The syringe driver does make a lot of difference I promise you & I can but hope it is over for your dear mum peacefully and quickly. I had Hospice at Home for my husband which was very helpful.

[Colette-S]

So sorry Ariel, it’s heartbreaking to watch. I hope they manage to keep your mum comfortable xx

[harber78]

Princess Ariel so sorry to hear this and if you are able to I would visit your mum ASAP xx

[Princess Ariel]

Originally Posted by harber78

Princess Ariel so sorry to hear this and if you are able to I would visit your mum ASAP xx

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Thank you all so much, the last couple of weeks have been emotionally exhausting for all of us. I did go and see Mum on Monday which luckily was the best day she’s had recently so at least I have that memory with her. I am planning to go and visit again on Saturday with my eldest DS (21) as long as she doesn’t deteriorate before then. The hospice have said they will contact us if it looks like she is nearing the end so that we can all get there and be with her and they are aware that I am a couple of hours away so that’s reassuring.