OH now on end-of-life care.

What a dreadful journey, Luckygirl.

Is there anyone else who can hold the fort while you go home and sleep?

Marmight - a sad anniversary.

Thank you for kind messages.

I have been with him till now today and there is a room at the NH where I can sleep over if I wish - but if this is going to continue (and who knows?) for a while then I have to inject some sort of normality. So I am back home to sleep - they will let me know if he is distressed in any way.

He has been asleep all day - and I try and converse with him for the 1% of the time when he opens his eyes. He can barely speak and I can hardly hear what he is trying to say. It is so hard as today he mumbled that he did not want to be on his own - but how can I be there every minute?

Now here is a bitter irony.....many of you will know that OH has been refused continuing health care funding twice and I have been embroiled in appeals and been treated appallingly by the health authority. The first appeal I made about 4 months ago has not been heard yet. Well.....the administrator at the NH came up to me today and said that the hospice nurse had put in a fast track application for funding for OH and it has been approved. So now we know for certain that you only qualify for funding if you are dying. It is pitiful really, but there it is.

Lucky thinking of you as you go on this sad journey. Yesterday was the anniversary of DHs death. He died suddenly & quickly without a chance for us to say all the things which needed to be said. Sadly, there is no easy or right way for those of us left behind. Sending my love and hope that you find the strength to get through the coming days. GN was my salvation and I hope the support you have from us all helps in some way

Thinking of you “Lucky* ?

Having followed your sad and brave journey I was hoping for some sort of resolution for you all; I keep you in my prayers, Lucky and hope that it doesn’t last much longer.

Dreadful strain - would hospice care be appropriate at this point?

"Sleep last night" - my brain is addled!

Thank you for kind words. I had a really good night's sleep this morning.
Yesterday he was able to mumble and you could hear some of what he said. He is taking in liquid.

Spoke to PD nurse this morning and she said that this can sometimes drag on for weeks - heaven forbid, poor man.

You're both still in my thoughts and prayers Lucky. Hope you manage some decent sleep tonight

Hope you both have a quiet night Lucky

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for you and gentle love and hugs for your OH. God bless you both.

Lucky I hope you manage to get some well earned rest tonight.
Night, night God bless to you and your DH.

and a ((hug)) thinking of you

Lucky have a good nights sleep x

thinking of you and your family Luckygirl a sad time for you all to deal with.

Night night sleep tight

Sleep well Lucky

Thinking of you and your DH Luckygirl

So sorry to read this Lucky Girl. My brother has PD with lewy bodies too. I hope your OH torment is soon over it’s a bloody awful disease.

Wishing you restful sleep Luckygirl , strength to face the days ahead and hold in your heart each small precious memory xx

Thank you - I have come home to sleep again - we do not know how long this might go on and I have to get some proper sleep or I will be no use to him at all.

All the family have been with him today. He is asleep most of the time but occasionally is able to mumble a word; and today he managed to say "I love you all" - we will all treasure that. Two GSs went in and dealt with the situation with great sensitivity - I was proud of them.

Hoping you get some sleep tonight lucky.

Septimia, you summarise perfectly how one feels at times like this.