Hi, I’m new to the forum and not really sure what I am doing. I suppose I am my sister’s carer. She was diagnosed as having stage 4 cancer last month. Totally out of the blue. They can only give her palliative care. She only has me to look after her. I have no idea at all what I am doing. Or where to go for help. MacMillan have been in touch and sent out leaflets but there is so much to read.
Hi & welcome Christine
So sorry your sister is in such poor health. What age is your sister this helps for the forum to provide knowledge.
Where is your sister at the moment.
What do you think you need possible answers to - straight away.
Hi Christine and welcome,
I’m sorry to hear about your sister.
Does your sister have support from paid carers too?
Are you staying with her?
Melly1
Christine,my brother was diagnosed with pancreatic cancer when in Uruguay, leaving me to empty and sell his house in the UK as quickly as possible.
My advice would be to try and take control of your feelings and what needs to be done.
Does your sister have any other family?
Own a house?
Have over £23,000 in savings. Yes/No.
Has she given you Power of Attorney?
Do you know how long she has left?
Thank you for your replies.
My sister is 54 years old. She is living in her own (rented) home. She doesn’t have paid carers; it’s all so sudden, she’s in shock I think, she’s not letting anyone, apart from me occasionally, into her home. I have my own house and family but live very nearby. 5 minutes away. We have an elderly mother who is blind and very frail, we haven’t even told her yet, I can’t even think about that conversation. My sister has a son but he lives in the US. We also have a brother but he works full time and has a very demanding job. I work part time.
She doesn’t have savings. We haven’t spoken about anything like Power of Attorney as she has just zoned out. She is being sick all the time and the doctors can’t seem to get that sorted so she is very weak. Everything she eats (which is very little) comes back up again. They have given her sickness tablets but they aren’t helping. It is so difficult to get help especially when my sister isn’t in a place where she wants help. They have said they can give her palliative chemotherapy but she needs a PET scan before they can decide on the type/dosages. The PET scan place is an hours drive away. She can’t walk from one end of the room to the other without being sick. So she cancelled the appointment. She’s saying ‘what’s the point in chemotherapy if I’m going to die anyway?’.
We don’t know how long she has left. She works in a hospital setting and says she can tell by the way they are talking and how they are talking that it is not long. I don’t know if that’s the case or if it’s just her mind deceiving her.
I’ve spoken to the MacMillan nurse and the specialist nurse but they don’t really tell us anything. Just stock phrases. All very generic.
Sorry for the long post. I’m at my wits end.
What a mess!
Is her son aware of her illness? It’s time he stepped in and at least talked to his mum about POA, etc. She is entitled to Fast Track Attendance Allowance if she is terminally ill with less than 6 months left.
Do you know who her GP is?
What sort of cancer it is?
The more help she accepts the longer she can stay in her own home, right to the end if that is what she wants, but you must make it clear that you cannot support her without help. That’s going to be a difficult conversation, but she cannot expect you to drop everything for her. We all have our own obligations.
It sounds as if she is going to end up in hospital herself unless she accepts help?
Is that a fair assessment?
Unfortunately, cancer has been a regular feature in my family, me included. I’m hopefully OK after major surgery.
If you know what sort of cancer it is, ring the charity that deals with that ailment, or the MacMillan helpline.
When my dad, carer for my housebound mum, was obviously very ill with prostate cancer, and I knew it was only a matter of time before mum would be entirely my responsibility, I needed to know how long he had left, and the GP refused to talk to me at all.
So I rang MacMillan, explained the situation. They asked me to describe his symptoms, and then said they thought he had about six months left. They were just two weeks out.
Then I went back to the GP told him what they’d said. He was then more forthcoming, and said whilst he couldn’t talk specifically about dad, because of patient confidentiality, he could talk generally about what generally happened to people with prostate cancer. He told me all I needed to know.
Hi Christine,
I don’t have experience of caring for someone with cancer, but have friends who have. Hopefully other members with direct experience will be along.
I would have thought the most immediate issue is the sickness as this must be horrible and getting that under control. Very hard to be rational when constantly throwing up and feeling so rough.
There is quite a lot of info out there re controlling sickness and vomiting in cancer patients - sometimes it helps to have knowledge and ask the GP/prescribing nurse for a particular med to try https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/nausea-and-vomiting
https://www.cancer.gov/about-cancer/treatment/side-effects/nausea/nausea-pdq
Is she still sipping drinks and taking dioralyte or similar. She doesn’t want to become dehydrated on top of everything else.
She should be entitled to fast track continuing health care funding to pay for care either in her own home or in a hospice if a bed is available.
I understand that telling your Mum is going to be difficult, but don’t leave it too long as otherwise she won’t have the time prepare herself - having lost my Dad to a sudden and expected death, this is by far the worst.
Melly1
Edit: Typing same time as BB
Christine
I have dealt with a dying sister aged 52 from lung cancer. It became very complicated as not everyone was aware (because of her wishes). Of the severity of her condition. It caused no end of problems and complications. And included birth children and grandchildren still living at home.
There is a fine line with knowing something and being instructed not to share it. Conversations how every uncomfortable need to take place. I would make a list of your concerns try to speak to your sister. If she doesn’t want to speak about it. It has to be at least left with her to read. Try and ask your sister to break down one task at a time. I know when she is being sick this isn’t ideal. Do you know any of your sister’s close friend or work colleagues.
It a unfair burden to leave to one individual. We are talking about a person whole life. There is so much to do before and after someone dies. I’ve lost seven close relatives within four years.
I do agree Mum needs to be informed respecting wishes in one thing. It’s really unfair to be asked to withhold information. If your sister needs help to tell Mum. Ask the MacMillan nurse/s to support her.
Elderly mothers have lived through a war, or the immediate aftermath. More stoical than they are given credit for. When my father in law was very ill, I told my son with learning difficulties, when he asked “Is grandad going to die?” that he was very poorly, but the doctors were doing everything they could to help him. Mum at least deserves and needs to be told that her daughter is very ill.
Her son is aware but hasn’t really done anything since she told him. That’s causing upset too. I think she expected him to increase the amount he contacts her (he texts once a month or so) but there’s been no change. I know he must be shocked but it’s made her sad. I contacted him to say I was here if he needed me and that she would love to hear from him but nothing so far.
I know who her GP is and they have been great. She has colon cancer which has spread to her liver and stomach.
You are right that I need to have an honest conversation with her. I don’t want to do it on the phone. I need to get her to let me in the house.
Thank you so much for your reply.
I feel if we can get the sickness under control other things will be easier to deal with. It’s such a dreadful feeling. I have spoken to the specialist nurses today so hopefully there is progress there. Thank you for the links. Very helpful.
She is sipping drinks. She needs to get the balance right between small amounts and too much as too much and she’s sick. She needed 3 blood transfusions last month and has been thirsty since.
And yes, we need to tell our mother. It’s horrible. But necessary.
Her friends/work colleagues know. She actually works at a hospital so has lots of support available. She has just cut herself of. She only tells me. I’ve been trying to get her to speak to other people.
WE do need to tell our mother. My sister keeps saying not yet. Another conversation to have with her. I suppose what she is waiting for is the ‘how long do I have left’ conversation before she speaks to her. Is it 6 months or 2 years for example.
I feel I am in a nightmare.
You are right. My mother is an incredibly strong woman. She’s what the Americans would call a steel magnolia. Impeccable manners and a backbone of steel. She lost her sight 10 years ago and has never let it get her down.
We will tell her. As I said in a post above I can understand my sister wanting to know approximately how long she has left first.
Sadly my mother and my sister have always had a troubled relationship. They aren’t exactly estranged but not far off.
I didn’t realise that your sister wasn’t even letting you into the house. You need to have a key now.
Christine, I have had blood transfusions following operations and they make you feel really bloated, not a nice feeling.
If she isn’t eating much and taking meds, she could be constipated and that can make you feel nauseous.
Melly1
Good point Melly,
I can’t take anything with codeine in it before my digestive system stops working properly!
Hi Christine
Welcome to our forum, I’m sorry to hear about your sister. It’s an incredible difficult and worrying time for you.
I’m glad you have found our forum, we also run a weekly zoom meeting for our carers, we meet every Monday at 3pm. I’ve attached the link if you would like to come along and join us, we would love to see you there. There’s no pressure to share any information, unless you want to, its a chance for you to grab a cup of coffee and chat to other carers, pick up tips and make new friends. Here’s the link Christine
https://www.carersuk.org/help-and-advice/get-support/online-meetups
with all good wishes
Ingrid