Hi My name is Lynn. I am caring for my elderly mother who has terminal sinus cancer. She was diagnosed in Aug 2020 and we were at that time led to believe that she would probably not see Christmas 2021. The cancer has progressed and is now pressing on her brain. She has very little lucid moments now but still manages to tell me that she doesn’t want me to touch her, that my voice is far too loud, I hurt her every time I touch her as I’m too rough. At the moment my sister and I are looking after her on a daily rota. My sister has just this week agreed to take time of her work. Up until now I was doing every weekday 7 am to 9pm but then she got worst and we had to stay overnight. The days that my sister is here she either sleeps most of the day or they appear to have good old chats about my mums relatives. When I’m here she won’t settle she gets up and down from the couch or her bed every 5 mins she can’t or won’t tell me what she wants. She dosent appear to be in pain , I’m at the end of my wits please send as much advice as you can. I honestly don’t think I can do this for much longer.
I’m dismayed to read your post. Why on earth hasn’t the doctor arranged any help for you???
Google NHS Continuing Healthcare Framework tonight, especially the bit about “Fast Track” then ring the Practice Manager, and ask him/her to ensure that the doctor applies for it immediately, and help should be provided within 48 hours.
Is there a local hospice? They can also help.
Most importantly, do you now feel it’s time for mum to move into a hospice or nursing home.
You cannot be forced to care, and sound so utterly worn out.
Try to ignore what mum says.
I know this is hard to read, but Google “Signs of Dying”. You will find excellent articles explaining how the body gradually shuts down over a very long period of time.
Even harder is my next bit of advice.
It’s time to work out which funeral director you will use, and how much mum can afford.
Much easier now than after mum has gone.
Do you or your sister have Power of Attorney for Health and Welfare?
Hi
Thank you for getting back to me. Your advice is great. The doctors have done practically nothing for us. The local hospice sends a nurse out one a fortnight to see if there has been any changes in mums wellbeing. She spends time talking to mum and strangers any changes to her meds. We had two nights help from Marie Curie but have now been told that we have to be referred every week for overnight care, but the hospice nurse says that’s not the case. The district nurses delivered a toilet frame, zimmer and a bed handle to help all of which she refuses to use. I have told more than one doctor in our practice that I’m at the end of my tether but have been told just to take deep breath and keep going. Yes we have a full power of attorney but she will not go into a hospice and because she “behaves” so differently when my sister or the hospice nurse are here they don’t think it’s time. Her funeral is prepaid and she sat and wrote out her choice of music etc last year. ( she was the church organist up until the COVID lockdown). I’m sorry to be moaning but I feel so alone.
Not moaning at all, lots of us here have had problems relating to end of life care.
Sometimes, a mobile phone recording of what life is really like, not mum’s act, is needed to get doctors to understand how difficult things are.
Alternatively, you can issue notice that from a certain date you will “not be available to care”. I know it sounds horrible, but your situation is not being taken seriously by anyone.
The only power mum has over you is the power you let her have.
You are perfectly entitled to say “I can’t do this any more”. I did.
Hi Lynn
Welcome to the Forum, I hope you are finding it interesting so far.
Just wanted to highlight that we are currently running Forum Focus, an opportunity for Forum users to hear more about Carers UK’s work.
Find all the posts here: https://www.carersuk.org/forum/48
Thanks
Aaron
Lynn,
As the cancer so widespread, it’s affecting her intelligence.
She cannot tell you what to do, you cannot be forced to care by ANYONE!
It’s time the GP made that Continuing Healthcare Fast Track application, then mum can have free care at home, or in the hospice.
Lynn - Your needs are very important - you must start looking after yourself properly. It sounds like no one else is. To maintain good health you need to have a social life where you can talk to other family members and a network of friends. You need to do things you enjoy doing such as painting, sewing, dancing, swimming, walking, etc. You should have days out, holidays and things to look forward to. It sounds like you’re not getting any of these things. Many of us on this site have been in a similar position (including myself) and it is not good.
Do you really have to be with her all the time? Surely you could leave her on her own some of the time so that you get more time to yourself.
What a horrible position to be in Lynn. You definitely need to be getting NHS Fast Track CHC. I got it for my Mum and it was very straightforward once I explained to the GP what it was!! Best of luck and hope your poor Mum gets the help she needs.x