A Facebook memory popped up yesterday of a post that I wrote about my Mum titled “the beginning of the end…”, describing my Mum’s current state of health and how we were not anticipating her to live for much longer. Well she surpassed all expectations and is still here with us – but this is not a celebratory post, as I don’t think that’s a good thing that she is.
In the past 12 months she has deteriorated so far into the horrible world of dementia, she is completely unrecognisable. She is basically non-verbal, her eyes are vacant and void of life, she can’t remember how to put on a seat belt or pick up a cup of coffee, and her pain is increasing. In the last few weeks in particular, her pain levels have gone up. She is starting to have the same telltale signs of bowel issues that she did this time last year, however her Advanced Medical Plan has now removed all treatment except for pain relief. The last time she was admitted to hospital, the doctor explained that there was nothing they could do for her, so rather than schlepping her in and out of hospital all the time just keep her home and keep her comfortable. So we changed her medication and added as extra “as required”. The problem with “as required” is you need to be able to identify and understand when the person is in increased pain, which is difficult for a non verbal advanced dementia patient, who is still able to move around so you can’t monitor them constantly like someone confined to their bed. The nurses at Mum’s home are lovely, but they are understaffed (as are all nursing homes!) and so it’s almost like out of sight, out of mind with Mum. The last few weeks every time I have visited on the weekend she has needed more “as required” pain relief, and it was really starting to stress me out and upset me as I’m sure it wasn’t just a coincidence that it happened on the weekends when I visited, so what was happening during the week when I wasn’t there to advocate for her. After a number of teary phone calls to her doctor and the nursing home, her pain patch was increased and she was also put on additional pain relief regularly not as required. If the bowel issues are going to be what kills her, then it will be incredibly painful and we need to be on top of that pain, not playing catch up. When I visited her this weekend just past, she looked like a completely different person. Her face was relaxed for the first time in ages, which broke my heart as it was evident in hindsight that she was in incredible pain that even I missed because I was so used to seeing her expressions like that. One of the nurses that I get on really well with also commented on the change in her face, and her lack of agitation in the morning. So the arrangement now is the moment she shows any more signs of discomfort or distress, we increase the regular medication with no more as required, and continue increasing until she slips away for the final time. We are officially in the palliative stage of dementia. This may be days, weeks, months – we just don’t know. She has surpassed all previous expectations and the women of my family are a stubborn breed so who knows how bloody long she will continue hanging on. I have tried having the conversation with her to let go, but I am not convinced anything is getting through anymore. At my last visit she hadn’t opened her bowels in a few days, but given her history of bowel issues they can’t give her anything to move it along or we run the risk of popping her bowels – and no pain relief in the world will make that feel better until she passes away. I have gone through every stage and emotion attached to the grief of losing someone with dementia, and now I just want it to end. I lost my mother a long time ago, and the bag of flesh and bones that is still behind is suffering an undignified demise and deserves better. A few weeks ago I couldn’t find a nurse to change her pull up, and so I had to take her out to the shops with a shitty nappy on. What universe do we live on that this is an acceptable way for someone to live the last moments of their life? If she were my dog, I would have done the humane and caring thing for her years ago and let her leave this world. I’m at the point where I am wishing for her the end, so that she can finally be free from this hell. This may be confronting to some, but I make no apologies. Until you have watched someone die in front of you, but their body still remains behind, you will never know what this is like. I am tired, I am sad, I’m done and just want to get off this ride now please. They say when someone dies that you instantly remember them as they used to be, and not what they were like at the end. I’m scared that I have lost the memories of who she used to be, and that this will be etched into my mind forever. I’m scared that Ruby no longer remembers visiting Grandma’s house and sharing those special moments with her, that all she will know and remember is hospital visits, and the vacant stare from the person that used to be her Grandma. My mum is not a religious person, but I am and I am praying hard that this final stage happens quickly – so that she can be free and happy again, and we can begin to get back our happy memories of times gone past.
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AuthorHi, I'm Rhiannon and welcome to my blog. I'm not an elite athlete and I may never win any races, but I'm a "real" runner, juggling work, family and life to achieve my running goals. Archives
October 2020
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