So so tired

Hi I am new to the forum
My mum has been diagnosed with end stage idiopathic pulmonary fibrosis. She is out of hospital and home with oxygen
She now cannot walk without becoming very breathless
Previously she was very active and never ill . She cared for my dad at home until he passed away sept 2017.
Since 2016 when my dad was diagnosed as being terminally ill with head and neck cancer I have tried to be there to look after both of them. I have been staying over at least twice a week and at their house caring every day I am not working
I also look after my daughter who is mentally ill with borderline personality disorders and is agrophobic so she needs me to go everywhere with her
I know my mum is very ill and I am very close to her but I am so tired that I feel numb and I am not crying even though I know what is coming.
Mum has carers who come in morning and night but I worry so much when she is alone
I have spoken to my partner of 20 years and think I might need to be with mum a lot more.
I just don’t know how I can manage
Thank you for any advice xx

Hi Diane, welcome to the forum. You need to think of yourself as Care Manager, making sure mum has what she needs for daily living, so you can be provider of special treats, and things you know mum really likes.

How long has mum been home?

Before mum was discharged, the hospital should have made sure she had everything she needed, including all the care she needed. Did anyone mention NHS Continuing Healthcare to you? You should have been present at the assessment, if you were not, then it wasn’t done properly.

I know it’s a really horrible question, but do you have any idea about how long mum is likely to live? You need to plan as soon as possible. Has there been any talk of support from a local hospice, for example?

Is mum now claiming Attendance Allowance? Do you have Power of Attorney?


Hospital discharge ?


Being discharged from hospital - NHS

CHC / NHS Continuing Healthcare ?

Main thread :

Thank you for your assistance. The consultant said she has possibly six months if she doesn’t take another serious exacerbation
I asked if she could have at home hospice care as they were so good when dad was ill.
My mum doesn’t realise how sick she is and doesn’t want to know times or anything. I have a sister but her husband has advanced kidney cancer so she is just about hanging on to her sanity
I just don’t know how to deal with all of this as it is overwhelming

We are here for you, and will support you as much as we can.

Is there a hospice near you. Ring them up and make an appointment to go and talk to them.
Our local hospice has an outreach service. I’m sure that the one near you will know how to approach this subject. They will support you too.

I am so sorry to hear that. You feel numb because it is just the only way your mind and body can probably cope at the moment to get on and do what needs to be done.

PLEASE don’t try to do it all. Great that you have care in, get more if needed. Make sure you get enough rest so you can enjoy what precious time you have left with her.

You are not alone, and you will get through this hard as it is. x

Oh I so feel for you, as I have been overcome with exhaustion too. And I agree with the others, you need to find support you need for yourself, to help you cope, but also support for the people you are close to, so that it doesn’t all fall to you