I've seen many posts on here of people talking about their loved ones in the 'later stages of dementia'.
How do you know it's late stages? Have you been told by medical professionals or is it a feeling? Are there certain things to look out for which determines late stage of dementia?
I'm not sure where my Dad is, to me it feels bad but I just want to know where we all are. Somedays it feels unbareable? Does that make sense?
Xx
Isn't it so easy after the event, to realise where things went wrong? We trust, we do what feels right at the time, and later as events take over, we find out that maybe we should have dealt with things in different ways.
Such a simple question. I came here to ask the same question myself in the hope that there was some “official” answer.
The fact that I had to come to the forums to find the question even being asked does not give me great hope.
I am another who can quite easily tick off 75% of the criteria on Toms list for my Father. I am a carer for My mother who has almost nil mobility and my Father who has Parkinson’s dementia. The main problem with Parkinson’s dementia is that it is extremely inconsistent.
There can be days when there are glimpses of my Father as he once was, when he is calm and seems to recognize where he is and who we are. But then there are bad days ranging from aggressive behavior through total disorientation, to what can only be described as vegetative times, when he seems to degenerate into a world of his own where he cannot be reached.
Unfortunately the lucid times grow less and less with the passing of time. And just recently he seems terribly confused almost all the time. We have gotten so that we prey for sleep. Because when he is asleep he at least does not take 100% attention and care for fear that he may fall or wander off when we fall asleep due to endless nights spent watching him.
For myself I have found that I am a better carer when I detach myself from emotional connections. I no longer dwell upon the sadness of the situation, but only upon the practicality of dealing with the endless small tragedies that occur unendingly every day. In this way I feel am different to Tom, I know full well that I am doing all I can and that is all I can do.
What happens beyond that passes into the realm of, what will be will be. My Father had a good life, a good innings, as we say here.
It is of course devastating, especially for my mother, to have to watch him daily deconstruct all that he is from the inside, to be reduced to the basics of human existence.
I believe you cannot expect anyone who has not experienced it to even begin to understand. Therefore I do not criticize to greatly those who cannot understand.
As a Dementia carer you become part of a secret order of beings, who you recognize simply by the hard worn expressions that they wear upon their faces, and the resigned look they have deep in their eyes.
Recently I had to visit the hospital myself with suspected heart attack. Long story short, it was mostly stress. Before I left I was introduced to a nurse, quit clearly a member of the secret order.
Strangely enough it was the first time I laughed for a while as we again and again struck hidden chords.
When I was eventually told the results of my angiogram, all good, I joked that I felt like a soldier, who having been wounded and sent back to the medical unit, was then informed that” its all ok, You are fine now, you can return to the front line”
Please excuse what might seem like wallowing in self pity in the face of those who have such a terrible disease.
I think though that in many cases the carer can suffer as much as the sufferer. Maybe even more so, as many Dementia sufferers are, thankfully, unaware of their predicament, or so it seems in the so called latter stages of the disease.
So we are really no wiser as to how far down the road our loved ones have traveled. Or how long we are supposed to watch the gradual decay before we crack.
Maybe the final stages are more in the hands of the carer, how much can they take before they themselves have to finally give in.
