I'm very tired so don't have too much desire now to stay on line as I need some will to prepare for my son's secondary school application tomorrow on top of everything else.
Mum is constantly sleeping. She is still with us. The nursing care is wonderful. We get a pair of nurses coming in 4 times a day. They clean her, change her pad, change the absorbant sheet on her bed. We have the district nurses coming to check the medication between once and twice a day. The macmillan nurses come periodically to talk and check Mum, then we have an intermediary team assessor who spends so much time with us looking after Mum and checking that we are ok.
We have Marie Curie nurses coming in a night, at about 1900 hrs till 0600 hrs. We are left to rest and sleep.
Mum was very agitated at the beginning of this regime. They have increased the driver pump into her arm with twice as much morphine. In the UK intravaneous fluids are not allowed in the home, so any fluids were given orally. But now, she is losing the ability to swallow. We have a swab that is glycerine and lemon coated. I dip it in fresh water and gently clean around her gums and teeth with it. She has vaseline for her lips. We were surringing (spelling?) 3-4 drops of water into her mouth, and are doing this less often now as she can't swallow. We need to be very careful to avoid choking.
Dana
I have to say that your words yet again, astound me. Your description of your communication with your Mum and is exactly what I spent 2 hours doing last night with mine. Her eyes are kind of sticking together but yesterday her left eye was slightly open. She fixed my gaze and after the most minimal communication for 3 days I said 'Hi Mum' and she said 'Hi Marl'. I said 'Hi Mum' and the sweetheart said 'Hi Marl' again. Her words were unclear. She is so full of morphine and other medications that it is desperately difficult for her to vocalise. We spent hours chatting. She mumbled unintelligible words now and then, and I chatted to her. I told her I loved her a million times, I wet he mouth, I told her to go ahead and have a pee and that she had a good secure pad on. We played Andrea Bocelli's album again and again where he sings Italian songs and it is exquisitely relaxing. We communicated. Mum moved her eyebrows up and down and fixed my gaze and followed my eyes.
She has had her morphine dose put up now and she is less communicative although she is trying every now and then. Mum wanted desperately to be at home and that's where she is. But Dad and I have had to fight some terrible feelings of guilt and questioning if we're doing the right thing. As she can't have a fluid drip at home and only in hospital, should we have moved her back to hospital. Would fluids at this stage make her process of dying any easier for her? The nursing team and doctor has assured us that now the body will be taking over and doing what is necessary to balance the process. She does not seem as if she's suffering now. Mostly she sleeps and her breathing is regular. It will likely be a matter of days.
She has had friends and family coming in and out of the house and we are surrounded by care and support.
I'm exhausted with the question of fluids going round and round in my head. Should she have been in hospital on a drip? Mum was desperate to get home. If we'd have given her a drip and it had pulled her back from the brink after she had been so strong, wonderful and brave to go through the beginning of her dying process then she would just have to go through it all again. Wouldn't that be crueler?
I don't know if i'm making too much sense. And anyway, to make perfect sense i'd have to stay and write a lot more and i'm too tired. I'm going to have a shower and wash my hair. I've got to prepare for my son's interview too.
Holly, thanks for the pm. I know you won't mind if I reply through this by way of this note to all. Dana, what you have said about your Mum's last moments are really what are happening now for Mum and I. Darling Dana, what you describe is what is happening here and now between me and my Bren.
Thank you for your support. I can't say it too often. I'm a lucky lucky woman to have such wonderful folk surround me with so much love at this time.
Mali