Help with no sleeping

Scott45 1 year ago

2 replies

My mum has cancer she was given days to live last week.. then all of a sudden regained consciousness and now has been awake for four days solid. She is not destressed or in pain can understand me well. She has not stopped talking though.. I mean non stop all easy to understand. But now she is beginning to make no sense at all she thinks she is having a conversation with me.. but it’s random words. The nurse who only come once a day don’t seem bothered at all. I am on my own caring for her there are carers which come four times a day to help wash/dress but that’s it. I feel like I was ok caring for her for a couple weeks.. but it seems it may now be longer .. I feel very alone very tired and very out of my depth :( she had one wish and that was to die at home no hospice no hospital.

admin 1 year ago

Hello Scott45,

Welcome to our Online Community. We’re sorry to read about your mum’s diagnosis and all you are experiencing as a family.

Being a loved one’s primary carer can feel like a lot of responsibility and can bring with it a wide range of feelings and emotions. I’m sorry to hear that you feel very alone, and I’m so pleased you have found our Online Community. You’re welcome to share as much or as little as you like here and visit the Community as often as you need to. Hopefully others who find themselves here will share their experiences with you too.

You also mentioned about feeling tired and out of your depth, which again can be completely normal when caring for someone. Is there anything in particular you feel would be helpful for you and your family at the moment?

We have lots of information on our website about caring for someone with a terminal illness if you would like to take a look you can do so here: https://www.mariecurie.org.uk/help/support/being-there .

We also noticed from the title of your post that you’re looking for help with no sleeping. Have you spoken to yours or mums GP about what’s happening at the moment? It may be worth asking about respite and if there’s any further support available in your area.

I f you would like to speak to our Support Line for an instant response you can do so by calling freephone 0800 090 2309 or via webchat here: https://www.mariecurie.org.uk/help/support/marie-curie-support-line/using-online-chat .

Take care,

Bonnie

Jan1 1 year ago

Good morning Scott,

My name is Jan, a hospice-based nurse, on the Information and Support Line.

Firstly, I would like to say that I am sorry to hear that you are going through a difficult time now, as is your Mum.

Sometimes when our loved ones are less well, they can have varying degrees of wakefulness.

It is not unusual as the person becomes less well, as they move into the end stage of their life, for them to perhaps become more talkative or even withdrawn.

In some instances, this may be what is known as terminal agitation, or occasionally delirium.

It is not unreasonable to reach out to Mum’s GP and share your observations, particularly if it is becoming especially challenging for yourself Scott as main carer, as can be exhausting.

In some regions, Marie Curie has night sitters, for up to one or two nights a week. This may be beneficial for you enabling you to have a little bit of respite. The GP or District Nurse would know what services are available in the area.

It may well be Scott, that Mum may benefit from a GP review, to enable a holistic clinical review of the situation, to rule out an underlying cause of the presenting situation, and to be sure not related to any medications that are being taken.

https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/delirium

I would like to share at this point Scott, if you feel it would be helpful to speak to someone like myself on the telephone, then call us on Tel: 0800 090 2309 as here to listen and share information.

Take care for now,

Jan