As you may be aware by now, my Mum hasn’t been well for a while. She is 62 and has been in a nursing home for 4.5yrs with dementia. In the last 6wks she has been admitted to hospital 4 times, and each time she has regressed further with the dementia. She is now officially in the late stages of dementia and is mostly non-verbal, and becoming aggressive at times. In the last week alone, she was diagnosed with a tumour in her lung that is unable to be operated on (and chemo is not an option), giving her 12-18mths to live, as well as a condition in her bowel that, given the advanced state of her dementia, is also unable to be treated and will continue reoccurring until the end – flare up, hospital admission, treat symptoms, discharge back home. Lather, rinse, repeat. As each admission causes her to deteriorate further, it appears as though the original guesstimate that she would not make it to the end of the year was grossly inaccurate and it is believed it could now be months instead. After the initial numbness and shock wore off, I felt relief. Followed by guilt that I should be relieved my mother is close to dying. But sitting with her day in day out when she’s in hospital and watching the shell of a human being in front of me lose all dignity and life, it reminds me of a conversation we had years ago before the dementia took hold. She once told me she never wanted to be left in a vegetative state if she ever got sick – well the current life she’s living feels like as close to a vegetative state that one can be without actually being hooked up to machines. Imagine being wheeled to a toilet by strangers, while they wipe your arse and clean up yet another accident you had, while you just sit there sobbing before staring vacantly at the floor. This woman – who was once a warrior, who fought the hard battles all her life before her demons became too strong to overpower anymore – reduced to a lump of flesh that often needs draining from both ends. I’m sorry for the graphic details and the harsh descriptions, and this isn’t a dig at the health care professionals and everyone we have come in contact with recently have been amazing. The nursing home staff love her like one of their own mums and are just as heartbroken to hear the latest prognosis, and the hospital staff now welcome us like old friends and care for her with as much respect and dignity that they can. But surely this isn’t how the last months or years of someone’s life should be? My mum used to be a huge advocate for euthanasia and would tell me that she wished she had the money to fly to a country where it was legal before things got too bad. Unfortunately for her, we never got that in writing and signed as a legal document and so my hands are bound. Imagine your non-verbal relative, who hasn’t spoken more than 5 clear words in over a month, turns to you and says as clear as day “I just want to fucking die!” What would you do? Well I sat there, I said quietly “me too” and then I cried. I am the only person who can legally make decisions surrounding my mother’s ongoing health and happiness, and even I can’t give her the one thing she wants. A dear friend of mine is experiencing the end stages with their parent right now, and yet their experience is completely different to mine. My friend talks about death being as special as the birth of a baby when loved ones are around and supportive, and knowledgeable. They have described their previous experiences with it as being magic and something amazing to be able to experience. My friend’s parent has physical ailments but their mind is still 100% and they have been able to have many wonderful conversations about the end, and what they both hope it to be like. When I first read their messages I was confused, how the hell could this be lovely? This is hell on earth right now. But the mind is a powerful thing, and it’s amazing just how much influence it has over many different situations. To be at peace with what is happening and to be able to describe it to your loved ones while they sit there, embracing you with love until you take your final breath on this earth. Wow. I am so thankful that they are able to have such special moments with their parent as they near the end of their journey, and yet I can’t help feeling ripped off that both my mum and I don’t get the same experience or closure. It brings up the old feelings of resentment and frustration, where I get angry with my mum for doing this to herself and to us (her dementia is called Korsakoff’s, which is alcohol induced dementia and is caused primarily by being a chronic long term alcoholic). Frustration that my 7yr old daughter will have memories of her grandmother walking around with no pants on and the room smelling of shit as she had soiled herself again just before we got there. Or that she won’t be around to see Ruby graduate or do any of the other epic shit that her granddaughter is destined for. Or that she no longer has any idea of who I am, and yet I will continue to sit there day in and day out as she gets cranky at me for not giving her clothes and tells me to fuck off (again – she’s non verbal people but the few words she does have are crackers! Lol) To be honest I don’t really know what the point of this post was. I guess I just needed to get it all out. Bare myself in a way that I haven’t been able to do for a while, as I need to be switched on all the time around her and the medical staff. To anyone that has been touched by the evil curse that is dementia, I am truly sorry. I wouldn’t wish this hell on my worst enemy. To those that haven’t experienced it first hand, please make sure that you have the difficult conversations with your loved ones before they are no longer able to have them. I touched on this briefly in a post 6wks ago when she was first admitted, and many of you messaged me afterwards to thank me for being so open as it prompted them to begin those conversations. I have just finished completing an Advanced Medical Plan with both the nursing home and the hospital, and believe me when I say you need to be specific and down to the extreme fine details so it’s best to know this now about your loved ones so they can help shape what their final months, weeks, days and hours will be like. Don’t leave it till it’s too late and the livelihood and actual life of another human being rests solely in your hands. I will end with once again, a big FUCK YOU to dementia!
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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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