HI
I recognise most of what has been described. Ask the carers, they tell me "she`s ok". I can clearly see daily deterioration. Cardio Vascular. Now needs cradle sling for hoisting, she cannot hold on to straps. She has been on pureed food for over 1 yr and thicken drinks. Double incontinent for 3years. used to make noises, but now only when moved. Some carers have neverheard her speak. Happy demeanour until she suffered an infection pre Christmas in pressure ulcer on her ankle, her first, but although the ulcer is healing, the progresion of the dementia has taken a huge drop of the past few weeks, and even daily now I can see more loss. She has always been caring, affection, hugging and kissing people, now we sometimes get a weak smile/giggle, she used to kiss me, but now her tonge comes out thinking Iam something to eat. Somedays she will hold my hand, others I hold her limp hand. She is exhausted. Now her care regime is, depending how she is, up about 9am, sit in lounge (she people watches on a good day), I visit daily to feed her, today she kept resting inbetween mouthfuls, leaning to the right, head back eyes rolling, but slowly but surely she ate all her food (essential for healing the ulcer), then bed rest all afternoon. We have a radio on for her to stimulate the brain. Up again to the lounge for tea, then back to bed.
Three times a day hoisted. Moved 2 hourly in bed even though she has an good hospital bed. We are waiting (now 2 weeks so far) for the thicker night time pads, (protolcol! what a sham, she`ll be dead by the time she is assed and pads delivered!!) (I don`t understand if carers report she needs night time pad, why is an assessor required and why so long) carers have to completely change the bed and mum every two hours! What sort of life is it now for her. I am her only child, so we are very close. I sit in the lounge with her, enjoying our "mummy cuddles" - she is just like a new born. Everyday I think could be her last, and ever day the carers say "shes fine". Like most of us, I cry on my way, smile and laugh when with her cry most of the way home, then more crying as I await "the phone call" even though she is not on end of life care, but I feel she will just slip away in her sleep very soon, I hope so, it would be kinder for all of us. It is heartbreaking. I don`t feel special to her, but she has no idea who I am, but I know who she is, my Mum, and I still need her touch, her smile when it appears, she is special to me and perhaps deep down she knows its her "darling daughter". We have walked the road together for so many years now, how will I cope without her, I daren`t think. I pray nature has been kind to her and others going through this horrible experience, and they are unaware of what is happening to them, and as they draw close to the end, they have no recollection of their own suffering as they decline. Sorry very distressed today (I have been quite calm last year, up until the "drop" caused by the infection pre Christmas), which I am most days. I keep my mind busy. I do wasgijs, jigsaws, but not the picture on the box/I am a secretary to a local archery club, my husband and I enjoy caravanning, so take frequent breaks even during winter. We`ve been busy refurbishing the house and sorting ou the trees/shrubs uin the garden, because when I`m not busy, I`m a mess!.
Waituing for the day, I can no longer hold her hand and cuddle her. I`m 67yrs old, and still a child at heart and to Mum, how silly does this sound, I better go now as niagra falls has started, so I need to take myself away and calm down before I go to bed.
God Bless all you witnessing the "long goodbye".
Heather x