Hi, my name is Nicky and I am new here. I care for the person I live with who is a friend/partner called Lyn. Lyn has metastatic breast cancer and type 1 diabetes so her condition is life limiting. But that is not really why I need support. Lyn is very sensitive to infections and they have started to cause delirium which can last for months. When she has it she is like a different person. She screams at me, calls me terrible things and is furiously angry at everything. It is very hard to cope with. I am just about staying on top of practical things like meals and washing but I am struggling not to take the anger and insults personally. It means things escalate to horrible situations. Does anyone have any experience of this? We really need help. Thank you for reading xx
Hi Nicky, welcome to the forum. Such a sad situation.
To me, this aggression is unacceptable, whatever the cause.
Would it be possible to safely record some of her dreadful outbursts on your mobile phone?
Some forum members have found this the best way of doctors taking the situation seriously.
Do you know how long she has left?
My dad was one of the government’s top scientists, a brilliant mathematician. He developed prostate cancer, but after he died I found he’d made some really awful financial decisions, which I was left to sort out! The cancer had definitely affected his reasoning in various ways.
Is the GP any help?
Are you getting any support from Macmillan, a local hospice, or similar?
Macmillan were really helpful to me when I rang them up, and the local hospice were great with dad.
Is your friend claiming Attendance Allowance?
Sorted out a Power of Attorney?
Thank you so much for your response. We don’t know how long Lyn has left. She is refusing to take the hormone tablets that are her treatment so that will shorten things. I could try and record an outburst I think. It would probably anger her more but that might not be such a bad thing. We have s fantastic hospice in our local area who are giving us loads of support. They came round last week but I wasn’t 100% honest about how bad things are so I am going to call them on Monday. Lyn hasn’t done a power of attorney - she started but didn’t finish the process. We need to do that. Thank you again for your response.
You need to talk to the hospice staff away from home, where you can be completely honest about how things are, and how you are struggling, also your fears for the future.
My dad’s GP wouldn’t tell me anything, although he knew I had a son with severe learning difficulties and would be left to care for mum after dad died!
So I rang MacMillan’s helpline, they asked me what dad’s symptoms were, and from their experience told me he had about 6 months left. In fact it was 6 months and two weeks.
Even though I’m sure you are struggling to face the idea of a world without your friend, you need to know so that you can make plans.
Another suggestion, also not pleasant, is to Google “Signs of Dying”. I did this when mum was very ill, in fact she had 2 years left, but it really helped me understand more about why mum was often not very hungry or thirsty. She wasn’t dying because she wasn’t eating enough, she didn’t want to eat much as her organs were gradually shutting down, and her body knew automatically how much it could cope with. I could support mum so much better with this information.
It’s a horrible time of your life, knowing there is nothing you can do to stop what is happening.
I had a private counsellor towards the end of mum’s life, by this time I had been disabled in a car accident and suddenly widowed. Normally regarded as a very “strong” woman, I found that everyone had a breaking point.
It’s OK to say you are struggling.
Dear Nicky_21101
My name is Kristie and i am an online community host for Carers UK. I am so sorry to hear about the difficult situation you find yourself in with you and your friend. I am hoping Carers UK can help you.
I would just like to say welcome to the forum. You are not alone in your caring role and i am sure that many on here will understand exactly how you feel and will offer you support. Caring can be very lonely and the pandemic has made caring responsibilities more challenging than ever and many carers have been socially restricted and unable to attend social groups etc.
Carers UK are running online weekly meet ups for carers and you can find the information on how to register at Care For A Cuppa:-Online meetups | Carers UK. There is another group called Share And Learn:-https://www.carersuk.org.help-and-advice/get-support/share-and-learn-online-sessions.
Carers UK telephone number is 0808 808 7777. The line is open from Monday to Friday, 9am-6pm and the email address for Carers UK is (advice@carersuk.org).
They provide information and guidance to unpaid carers. This covers:-
-Benefits And Financial Support
-Your Rights As A Carer In The Workplace
-Carers Assessments And How To Get Support In Your Caring Role
-Services Available To Carers And The People You Care For
-How To Complain Effectively And Challenge Decisions.
Best Wishes
Kristie.