When is it over?

Hi...new member here.

It's been about 4 years since my father started losing the threads, began to construct his own world.

And just over the past few months there is only silence after the initial greeting.

I hug, stroke and massage his hands and feet, which he seems to enjoy.

But now when I make eye contact I feel that it somehow threatens him.

As if he knows he's too far away and can't get back.

Has anyone else had this feeling?

Jaysal.

Thanks SnowyLynne

It's maybe me,  projecting my own emotions and fears onto him.

I visit him every second day, to assist with his meals and put on his pyjamas etc, which is great practical help I know, but always inside and behind it all is this desparation to hang on to him.

He was my world.

Hoping always that it does bring some comfort by being there.

But also wishing he isn't aware of the need for comfort so that he isn't stressed at all.

Want it both ways I know.... hate this insidious disease.

Hi Lynnie,

thanks for the welcome.

I think there's a difference when it's your partner, I've seen my mother do the same thing but with more intensity, I imagine the need to connect with a partner is stronger.

My "gut" feeling is that we are inadvertently asking them of something they aren't able to give and it threatens them and they get frustrated.

What I do now is only use eye contact briefly.

I guess it wasn't so bad when each day he got further away but I was able to go with him ( if that makes any sense).... now there's no place to follow.

It's a minefield of emotion isn't it?

You have just helped me!....reading this back to myself I got very anxious....and realise that with my brain pathways still working normally, the inability to connect is frightening, and it makes me feel inadequate.... how must it feel for someone who's pathways are becoming further apart  every day?

Dear Miriam

I have loved and adored my father for 60 years, and it's only now that I can truly love him unconditionally as he did me as a child.

He doesn't know "who" I am, but he knows I am different to the people who surround him...I wear the same perfume, use the same phrases and mannerisms, in the hope it will give him some reassurance and sense of familiarity. But all of this is guesswork, I can't know what his world looks like to him, and I suspect the reassurance is for me.

It is as you say the "long" goodbye and sometimes the grief will ambush me when I am feeling vulnerable...but I am so grateful now that I can say goodbye, he's not been snatched away, he isn't in pain and he isn't concerned with the stress and anxiety of daily life.

Most of what distresses me is my need to explain to him what's happening, to ask if he is okay, to let him know he will never be alone, always be cared for. And I recognise it's my needs not being fulfilled that hurts so much.

He most certainly isn't the man I knew, but with the barriers down, the reserve gone, his essence is something exquisite. And finally I can love him in a way I never dreamt was possible.

But I still want him back!

Red

My father went through this stage of being the frightened child and like you it was gut wrenching to leave him. So much guilt and hopeless despair in not being able to help them. When I look back this was the hardest time of all.

Like a mantra I kept repeating to myself soon, soon this stage will be over and thankfully now it is and he's in a place where nothing seems to bother him.

But there are other people where he lives, whom I have known for a few years now and they seem to be locked into this frightened child stage, so confused and troubled. I used to go every day but now every second day so I have spent quite some time with the other people there, and from what I have observed they do forget the distress quite quickly.

Everyone is so different though, as are the effects of this disease....all that is common is how much it hurts the families. I think of it as a trade off, how much it hurts is equal to how loved and wonderful they were.

What I find very touching though is the extreme patience and gentleness they show to one another, even though seemingly they aren't communicating any sense as we know it. And I wish we could be as generous with our time and care as these new personalities are.