Nothing to eat or drink again so far today. She’s been chatting and awake all morning. We’ve had a very angry shouting session (not unknown) followed by a lovely music therapy session after lunch organised by the palliative care team.
My youngest daughter (17) arrived at lunchtime and then had a very angry melt down during music therapy. I understand she’s struggling with the rollercoaster of events but I’d had a very distressing couple of hours earlier with mum shouting “I’ll kill you, I hate you” etc and spitting at me so I don’t feel very resilient to coping with someone else’s emotions during the only nice part of the day. She’s now stormed out of the house and said she’s staying with a friend tonight. I had a similar outburst on Saturday with her anger and emotions being directed at me.
I really do feel for you, my mum used to be like this when I stayed over. It’s frightening & scared me as Mum was very mobile & unfeasibly strong at the time.
But I also really feel for your daughter, mines 22 & up until recently has really struggled to understand all the issues.
it’s easy to forget at 17 they are still children, not that they’d like to be classed as that.
you are understandably struggling with your Mum, & your daughter is to. I know that my children were resentful of how my time revolves around & still does sorting out my parents care needs.
like any teenager they don’t want to be different from their friends. Your Mum means that your time is taken up with her care needs- your daughter feels left out & wants her Mum back. It’s almost like our parents become our children & actually usurp our off spring!
She can chew and swallow fine. She has just decided to stop as far as I can see. Short of prying open her lips and teeth we can’t feed her. Today she nibbled the edge of a biscuit, had a couple of teaspoons fortified yoghurt and small amount of pineapple juice. We offer regularly but she firmly says “no I’m not going to”
I think this is a next stage in the illness. Oddly her mood has improved with less food and drink. She seems happier. She had terrible IBS and diet and consequences have been a huge feature of life for a number of years. That aspect has been removed. I can’t believe she has made a decision based on this as I don’t think she’s capable of that cognitive conclusion.
I know just how you feel. My Mum is at home with me, and I am her sole carer. She still has a little mobility but I do everything for her as she can't do anything at all for herself and is also pretty much non verbal. She seems to have spells of not eating or drinking then picks up a little but the past couple of weeks its been really hard to get her to take more than a couple of sips of every drink I make her and she's only been eating a mouthful of banana and sometimes an eigth of a sandwich. Just says no and starts crying everytime I try. I've had her bloods checked and a nurse has looked her over including her mouth but can find nothing physically wrong. She has been checked by the SALT team. I've taken her to the dentist too and have a doctors appointment on Tuesday. I just don't know what to do but I think what is worse is the constant crying, wailing, pacing and drumming of her feet and constantly tapping of her fingers plus awful uh uh uh noises all the time. It's heartbreaking. I just wonder how much longer she can go on like this, or me for that matter.
My Dad is like this as well
It’s part of the body slowly shutting down. The noises could be that they are experiencing pain - with dementia it’s hard to tell. My Dad has ongoing back & shoulder issues & is on Butec patches now with oromorph to back up the pain patch. when the home say he needs it so we often find Dad doubled over in pain.
apparently the home say unless he’s screaming out or lashing out then he’s not demonstrating pain. My Dads never screamed out or lashed out not even when he broke his ankle! So he’s unlikely to start now.
end of life care is a stage & you have to respect the persons choice to either eat or drink. It’s precious time to hold your loved one & spend time together.