OH is losing all his skills and most of the things we used to do have gone out of the window because he is no longer able to do them. He is at the stage where he just wants to sit on the sofa all the time with his android tablet. He doesnt want to go out, he doesnt want to do anything and all empathy is gone. In the evenings we used to watch TV together and even though most of the stuff was a repeat, we could still watch it together. Just recently he has stopped watching TV. If I turn it on he doesnt watch it, even if it is something he would have once wanted to watch - he just carries on scrolling through his tablet.
It seems that with that gone there is now no longer any connection between us at all - that was the last surviving thing. Today he has only said two things to me. One was to ask what time he should have his eye drops (I put them in for him) and the other was to ask what time dinner would be..I am so lonely here. Today I have only spoken to answer him as he cant process conversation and I havent even seen anyone else.
This is precisely what is so often missed in the perception of dementia as a whole. The very real and tangible aspect of communication which keeps an equilibrium on track. We can tolerate sickness and someone being unwell, just as long as we maintain interaction I.e. empathy, comfort, the equilibrium of simple to and fro of chat. When this becomes an absentee the whole nature of the relationship changes. Not the love of course, because that overrides even the scourge of dementia. But that "loneliness" is much like the moment you stand amidst the bustling life of a major city with all the ongoing activities and the normality of daily life happening all about you, and yet you cannot engage, because the loved one you cared for is no longer there, no longer a part of your physical and mental norm of daily life. That part of you which is them, is removed to memory, contained as such, because the norm of engagement has been compromised or simply ceased to be. This is what others cannot see, even in our own family and yet it is a fundamental challenge of significant proportions because it is in fact your life as it stands because you don't abandon anyone, you don't delegate the reality to anyone else , you adapt and that is a challenge in itself. Despite everything, and despite the always very poignant fact that when things spoken of and visualized and debated actually HAPPEN to oneself, you will come equipped with the armory of that debate, the understanding of others who relate through actual direct experience rather than clinical explanations and above everything, the power of love in essence. That thing which cannot be explained nor set down nor harmed nor in any way influenced despite the immense pain which can evolve out of this journey through dementia, because we are emotional beings and we are not perfect. Only you will ever know how you truly feel or what each day brings by way of the ongoing challenges. But by the same token, you have given and continue to give solace to so many others who come to TP in your expressions of understanding and empathy. That tells me that you will be well equipped to weather the "dementia storm" albeit a true challenge, because you are a witness to its devious nature and the way it claims the one you know and love, but which can NEVER claim the love which remains above all else and which remains deep within the loved one you care for, if hidden behind the mask of indifference and silence. For dementia is an imposter......love manifest in humanity, is not.