I've read through all of these posts and, as usual, as well as bringing tears, it strangely brings some relief knowing there are others praying for the demise of their loved ones as a kind alternative to the slow death we are all watching. When people ask how Mum is , my answer is always 'Oh just the same' because I do not want to have to describe the horror my Mum is living through. Plus, they wouldn't understand, so it all stays pent up inside. My reality is a variation of all of the stories on this thread, and the stories of those who have not yet shared. I spend 3 hours almost every night at the care home feeding and caring for my Mum (almost 89), getting her ready for bed and lotioning her head to toe, washing her face and curled up hands, pleading with her not to resist my efforts to ease her arm and hand contractures so I can keep the circulation going, and her finger tips healed. Most days her eyes are small slits, her tear ducts no longer working, she is either silent or mumbling incoherently in conversations with people I can't see, and grimacing but I can't tell if it is discomfort, fear or 'just' dementia. Her skin is so thin that she bruises at the slightest rub, her once well developed calf muscles have wasted away to little sticks, her hair is getting thin and she is now hoisted from bed to wheelchair for few hours then back to bed, where she is toileted like a baby ( on a predetermined schedule) because she can no longer safely sit on a toilet even with a lift. I carry on an inane one-sided conversation, telling of old family stories , nursery rhymes, whatever song pops into my head with false gaiety and much gusto. She only reacts to Galway Bay so I sing it over and over some nights when she seems frantic. As of this week I can no longer manage to wrestle her into the nighties I have adapted using snap closures because she is now in bed after lunch through dinner because she was slipping off the front of her wheelchair in her effort to place her feet on the floor to push herself backwards in the chair which causes her body to stiffen into plank! It took three strong PSWs to get her out of the chair using a hoist that is not made for moving a 5 foot plank! I hate leaving her when I am not sure if it will be for the last time, I come home and fall on the couch , without the energy to interact with my husband, or enjoy TV or even reading. My nights are filled with frantic dreams, always trying to get somewhere but never able to get there. I dread going most nights now, but she is still my lovely Mum so I just suck it up and go, but it is getting harder, and this is the time of year when another resident (or two) seems to die each week ( it is a large home) which just makes it all so much more depressing, especially when you see families moving furniture of their deceased loved ones out as you arrive!
Three years ago this month my Mum was deemed 'end of life' suddenly due to a mixup, and a few missed meals. We followed the palliative care model which stopped her meds and only offered food and liquid but not regular meals. After about three days I expected Mum to be on her last breath when she suddenly started to suck on a mouth care swab! I was not ready for her to go, so I dropped liquid into her mouth with a straw and when she swallowed it I began a 'heroic' campaign to pull her back from the brink. We had one good month when she was able to talk with us and propel her wheelchair before the decline started again. I realize in hindsight it was a selfish thing to do on my part and I wish I had had the courage to let her go then. I have learned my lesson and it won't be any easier to let her go , but this time I will be thinking about her 'life' not mine. There is no quality to the life her body is living, and she would be furious with me for letting dementia rob us of our lives.
Whew! This is the first time I have put this down in words. I know I am not alone on this soul sucking journey and that helps.
Wishing us all strength to endure.