My 91 yr old Mum has been considered EOL for some months now. She is bedridden, has no intelligible speech and has been incontinent and immobile for the last 4 years. Recently her weight loss over a period of months was shocking. She is now on pureed food and since I feed her dinner most nights, which up until recently included Cadbury chocolate bar (s) which I mashed into small bits and put in her mouth, I know her weight is not reflecting her calorie intake. After using fortified puddings etc, in addition to 3 meals a day for months, I now realize that her poor old body is just not holding on to the processed foods and I have accepted that this is part of the long, slow march towards death that is Dementia. I know what I am seeing in terms of the weight loss when I lotion her from head to toe most days, so I have asked them to stop weighing her ( since she is bedridden there is yet another hoist involved).
I have spent the better part of 12 years fighting the system, advocating for my Mum and others and trying to make things as 'perfect' for her as I can. I can't remember a single day that I was not in person, by phone, by email or just in thought trying to fight this cruel disease. Recently, one of the lovely ladies who has looked after my Mum in her care home for 8 years found me crying in frustration, and sorrow, I was worried that Mum was about to die, in spite of my best efforts. She said to me 'It is not her time yet, but when it comes we will ACCEPT it' In that moment I felt like the weight of the world was lifted off my shoulders and her words have somehow given me peace.
I am no longer spending my energy on trying to change the system, or trying to force reason upon bureaucrats with their inane protocols and stupid rules. I am now focusing instead on time spent making sure my beloved Mum is well washed, (I often do a sponge bath and hair cap wash on nights she is sweaty and hot), and always lotioned and perfumed , hair dried and brushed to keep her in as close to the way she was used to. I feed her the sweet puddings she likes instead of forcing her to take the puddles of food that her body can swallow, listen to favourite music and talk to her of family and people and places she loved.
I can't make her life the way it was, but I can give her comfort in feeling cared for and loved, which in todays long term care facilities is something they just don't have the resources to provide.
I think what I am trying to tell you all, is looking back at the 12 years on this roller coaster hell, is that if you can make peace with the fact that Dementia is a fight you can't win, you can choose to devote your energy to making sure your PWD's days are filled with the care and love they deserve.
Wishing you all strength on your journey.