Hi everyone thought I would give an update on mums condition. On Tuesday we take mum back for her first appointment since her surgery in December, we don't expect very good news either, she has jaundice now and has lost 7lbs in 5 weeks, she also suffers from dementia and it has escalated since her surgery, (we are fighting two illnesses here and the dementia is actually worse to deal with than the cancer). Last Saturday mum ripped out all her tubes from her neck, she told us she hated us and during the night she went out in the freezing cold in her nightdress and stopped a taxi, she told the driver we had kidnapped her and we're trying to kill her, the man was very kind and understanding (she was very lucky) and he asked her where we lived and he brought her home to us, I had to phone my sister and her husband to come and help us as my 23 year old daughter was so upset to see her grandma like this. I don't want to put my mum into hospital because I promised her I would keep her with me until the end but I am really struggling now and I don't know if I will be able to keep that promise. She is just a poor frail confused old lady and we love her with all our hearts. Joan xxx
FormerMember
Just wanted to send my fondest wishes to you, your dear mum and the rest of the family - it must be a worrying time for you all.
My mum has expressed a strong wish to stay at her home with dad until the end and like you, I have promised to try my best , but under the circumstances you really do need to consider yourself too...
Oh Joanny, what can I say. I am very glad that the taxi driver took her under his wing.
You have looked after her so well and for so long, she probably can't even remember now what you promised. As much as you want to, how could you possibly carry on caring for her when her sudden outbursts distress you all so much, as well as harming herself, you can't give her 24 hour medical attention and it sounds though that is what she needs. You will still visit for hours at a time but be able to have a break and do normal things too. You still need to have a life of your own.
Thank goodness the taxi driver knew what to do. Of course they see all kinds of things in the middle of the night.
I would tend to agree that you need more help. Whether it is hospital or more support from Social Services and the NHS, is really up to you. Can you lock your front door with a key? A proper lock might be a reasonable precaution, but it gets complicated. Maybe you could have some respite care for her for a few days so that you can get some sleep if it's available, and a visit from the district nurse more than once a day.
Dementia is a problem, but she is still there, just about. I know just telling us is a release, but we are here to listen and respond. Maybe your daughter would find it less distressing in future, now she knows what is likely to happen.
Hello Joan, so good to hear from you but I'm so sad for you that your mum has deteriorated so much, it must be such a fraught time for you. I totally understand how you feel, I really do - when I had to call an ambulance for my mum on November 10th, I knew they would admit her to hospital, but she was struggling for breath and we were both frightened, so I had to do it. From there, she went to the hospice (Nov 20th) for assessment and then she didn't come home to me again until 5th December - she died on the 10th December, so it was a heartbreaking five days.
After she died Joan, I questionned myself over and over - 'what about our agreement that she would only go into the hospice at the very end?', 'why didn't I keep her at home for longer?', 'why didn't I fight for her to come home sooner?' - but the bottom line is, sometimes as much as we want to be the best carer in the world, we just don't have the medical know-how to do it - and trying to and hoping for the best aren't always the safest option - not for us, nor for our beloved ill person.
I cried every morning when my mum was in hospital and in the hospice, but I also went to see her every day for at least two hours - spending quality time with her, reading to her, doing crosswords with her, singing to her, giving her a manicure - and then I could come home and try to at least get some sleep, eat some dinner, say a few words to the rest of my family. I knew in my heart that she was in the best possible place for her and until the end, when we both knew that time was running out on us, she was happy to be there too and if your mum didn't have dementia, she would probably know when it was time for you to have at least a little respite.
I'm thinking of you sweetheart and sending you as much strength as I can, but remember - you MUST take of you too xxxx
We're all here for you Joan - keep us updated and scream and rant if you need to xxx
