Fair warning - this topic may not suit everyone, so please do not read further if likely to get upset.
Why I created this topic here on this forum
I am a carer and I have been caring for my Mum with help from family and third-party carers for just over six years now. It has not been easy and perhaps we put on a brave face and “get on with it”. Sometimes I feel the need to write things down and I do so on this forum in the hope that it may help someone who might be in a similar situation to us.
Our post-stroke journey is reasonably well documented on this forum and you can read up by searching under my user name if you so wish. I may be repeating things or I may not but this is not necessarily a bad thing. Sometimes I have no idea!
Getting back to the why…
I happened upon an article on the internet with [click bait] title “Hospice nurse reveals what happens to you moments after you die.”
I read it and have read similar before, and it reminded me, not for the first time that death is inevitable and we will all die sooner or later and that today is the first day of the rest of our lives.
This leads me to my Mum and I wonder what she might be thinking and how she really feels about the life she now leads which is very different to the life she led before her stroke. As her carer, I am duty bound to care for her and make her life as comfortable as possible and it is my belief her quality of life is as good as it can be. We (my siblings and I) try to do our best but is it ever enough? There are times when we see the happy side of Mum and there are other times when we see the not so happy side of Mum, when she is struggling with something but is unable to explain to us what it is she needs help with. Funnily enough, I find this reassuring as it tells me there is a real person there just like me who is happy sometimes and sad at other times, tolerant and forgiving and angry and intolerant at other times.
So how do were prepare for end of life?
Is this something we are doing right now? Just over six years ago, when Mum was in her first few weeks post-stroke and lying in bed, we were told that she was “gone” and what we were looking at was just a shell. We were told to grieve for her even though the “shell” was still there and inside was trapped someone which we believe is our Mum but which the experts were telling us was not. We were given access to a psychologist (the one who told us our Mum was gone and we should grieve for her), but we did not feel the need to use their services. Mum was still there and we were not going to grieve for her just yet, in fact, we fully expected her to recover. As foolish as this may seem, we did not know the nature of the beast that is the stroke and so we thought it is just another illness and Mum being Mum she will recover as she always does.
We all receive such information differently and my younger sister cried when we were told [in a not so diplomatic/sympathetic manner] and was inconsolable for a while and I was putting on a brave face. My elder sister did not show too much emotion so again she may have been putting on a brave face. I told my younger sister not to worry about what the consultants were saying because they did not know our real Mum and they may be following a script that protects them from potential law-suits or something, or that they are just doing their job.
In time, we brought the “shell” home and we have looked after the person inside the shell who is clearly our Mum. Every now and then in subsequent sessions with certain consultants we have been told that Mum is in palliative care and that is about all we can do for her. I take that to mean we are Preparing for End of Life for her, and accordingly we have been doing so for the last six years or so! Well if that is what it is, so be it.
In truth, we don’t really know where we’re at. We have the healthcare sector’s view and we have the Carers’ (family) view and they are totally different. But it may be that they are the same. We’re trying to give her a better quality of life, trying to promote independence and encouraging her to live for the day and she seems to be fine with that. Indeed, the person we see today is very different to the one we were told to grieve for in a physical sense - much stronger, more alert and more communicative in her own way.
It is hoped that when the day does come, she will feel she was well prepared to Meet her Maker!
I believe I may not be alone in facing this scenario and that there are other members of this forum who care for someone who may also be being prepared for end of life and there may be stroke survivors who themselves may be preparing for end of life. I suspect there are those that are quite comfortable with this and I have seen on TV adverts for planning your own funeral, so perhaps it is not that a difficult subject to talk about. This might not be an easy subject or something we might want to think about and now you have the assisted dying bill that may soon become law and which may be of concern to some.
Thank you for reading. Please forgive the incoherent nature of this article as I did what I often do: “a brain dump” and this is now a tired brain of an old fool who knows not what he is doing!
As the saying goes, you are not alone.
Today is still the first day of the rest of your life!
Namaste|
