First week of Lockdown my Dad was diagnosed with Oesophagial Cancer, he is too ill to have surgery or treatment and they gave him a prognosis of 6 - 12 months, obviously we are approaching month 7 and thankfully he is still here.
Four weeks ago my Mum was diagnosed with metastasis Cholanglocarcinoma (Cancer of the bile duct), it's in her Lymph nodes as well, she was admitted to hospital a week ago because the tumour has blocked the bile duct completely causing extreme pain and extreme jaundice, at this point they said that they could do nothing, she was then given on Friday just gone a prognosis of 3 weeks.
My Sister and I are in our 40's, married and we both have children, 2 each, the youngest of them is 17 the eldest 27. We are a very close family thank goodness because we really need each other now, but this is a double edged sword as being so close this is so very hard to watch both our parents die before our eyes one after the other. Our parents helped us daily when the children were going through school with childcare, so that we could all work, but this only created a stronger bond between them all, so losing both Grandparents so close together is awful and my Sister and I are struggling to support our children and care for both of our parents, especially with our Mums coming out of nowhere and being so final so quick.
How do we get through this, how do we ensure they are not in pain, when we are given conflicting information from Drs, Cancer Nurses and District Nurses.
For example, tonight Mum was in extreme pain, so what do we do?
The Dr said she does not have to be in any pain so give her this drug and this drug.
The Cancer Nurse said if she is in 'this' level of pain call this number and a Dr/Nurse will come out and give her an injectable medication which we have ready at the house.
But when called,
The District Nurse said dont do as the Dr said, dont use those meds together, and no we wont use the injectable medication that you have as the Dr or Cancer Nurse need to tell the District Nurses when they can do this and they wont take it from us (understandable, as it could be abused), but then why give us the meds and that directive.
And I defy anyone to watch a loved one in that much pain and not want to ease it for them, especially when they have such limited time left, and their partner (my Dad in this case) is also dying and is having to watch his beloved wife die in agony knowing similar could be for him in a very short while.
My Sister and I are following the guidelines given to us by all these professionals, and documenting every med/pain/sore etc for both our parents, but is it too much to ask to have a clearer message and better control of pain for our dying parents?
That being said each individual professional has been up to now absolutely wonderful to our parents for which we are immensely grateful, especially the Acute Macmillan Nurses at the hospital.
Hi , so sorry to hear about both your parents and especially the challenge for your dad having the extra worry that he may well end up in the same position as your mum.
I recognize the situation of getting conflicting information from different health professionals, frustration does not begin to cover it. We hear to of patients that do not want to take some of the meds because it can knock them out or make them feel sick (my wife appears to be intolerant of oramorph).
When my parents were ill towards the end of their life one thing that worked really well for us was looking through some of the old photo albums and talking about their childhood and their lives when we were young. We got a real buzz to find out more about their lives and realise how strong they had been and perhaps how lucky we were to have them and made us even more proud of what they had achieved.
I am so glad that you have a strong family and it sounds too like you are getting support not just for your parents but for yourselves too - that is so important and is a major reason we have this forum. Do post anytime as someone is always listing but if you need more instant support remember you can always ring the helpline too.
<<hugs>>
Steve
