Hello Debbbie3
Yours is not an easy post to reply to, none of them are if the truth be known as all posts affect the writer personally and I have to be mindful of that. In that, your post is no different to others but it some respects it is very different - so many of the things you mentioned overlap but equally are separate and complex ‘stand alone’ issues - the Parkinsons, dementia, your dad’s other health problems and the ‘biggie’ death and dying. I have to remind you at this point that anything I write is entirely from my perspective and based only on my interpretation of what you have written; you are not obliged to agree but I do try to be honest.
First it seems to me that your dad is living every day with a multitude of difficulties and has been doing for a long time. You say he has always been optimistic about life which I believe has probably kept him going but everyone has their limits and what he is facing now with the Parkinsons and dementia may just be the straw that broke the camel’s back,
What you write about emotion is interesting and difficult where dementia is concerned. I have seen time and again people with dementia, any type of dementia, talked about and over as if they are no longer there or have any thoughts or emotional ability at all and maybe that is so. My own view is that although much is known about the brain and the neurological conditions that can be affected by it, until faced with that situation you never really know. I believe that even more since being diagnosed myself and there is a subtle difference between knowing about a condition as part of your work or personal experience of caring for someone for example, and living with it yourself. Why can’t a dementia be the same?
Death and dying is actually a very interesting subject which culturally we do not handle well in my opinion. People shy away from talking about it even in general terms and even when a person is considered to have a terminal condition, many just can’t face talking about it. If they are able to talk about it with family, friends or whoever it can become a strangely life enhancing time - there is time to put their house in order, to say things you don’t normally say because everyday life gets in the way, to recognise you’ve had a good life and a life of worth - in a way it’s a privilege most won’t have although of course is a sad circumstance you would not wish on anyone. The overlay of dementia makes this a very different ball game altogether and very much more complex.
All this theorising is all very well you may be thinking but what is the reality and what can you do? You ask specfically if people get stressed, anxious etc about dying when in the advanced stages. The simple answer is that some do, some don’t. In the same way that everyone has their own approach and way of dealing with any bad or life changing news so it will be when in the advanced stages and facing their own mortality. I have written before on the forum there are as many different ways of living with Parkinson’s as there are people who have it and to my mind, that is the same for those who know they are nearing the end of their lives.
Your other big question is how do you approach things with your dad and others. For me the bottom line is that first you need to accept, as I hope some of what I have written may have made clear, that others may see things differently to you and you need to respect that; other than that I think you have to take your lead from the person you are with whether that is your dad or anyone else. I also don’t think it should stop you saying whatever you need or want to say, even if you get told to stop being morbid or the worthless ‘he’ll be alright’ which is often trotted out when clearly he will be anything but alright. Most of all, don’t spend a lot of time agonising over the questions you raise. In a way although important and worthy of some thought and discussion, the questions are too big to be applied to your circumstances as an individual. You are clearly a caring person who just wants to do what’s right by your dad and everyone else involved. You are there for him and them, that is the most important thing and everything else will fall into place when it is right for your dad’s situation. If you take your lead from your dad or anyone else, if you listen carefully and pick up on any openings they may give you for fuller discussion and if you take opportunities to say what you need to say, that and simply being there and caring will be enough.
I’m not convinced this will help you very much but hope you at least understand the gist of it and that it may help you sort out your own emotions.
Take care of yourself.
Tot
