Anticipatory end of life medications prescribed

[Rachelx88]

Hi everyone, just looking for a bit of advice/support and I suppose a bit of a release if I’m honest.

My beloved dad has suffered from vascular dementia and Alzheimer’s now for almost 7 years. He is now in the later stages. He was admitted to hospital with an infection where he stayed for over 2 weeks. He has since been discharged back into the nursing home in which he resides.

Since his discharge, he has gone down hill rapidly. He is taking his antibiotics however his chest now sounds awful, very crackly, almost like a bubbling sound when he breathes. It wasn’t like this during his hospital stays although he did have fluid in his chest.
He had a drain fitted in hospital to drain the fluid off his lungs which was removed after 2 days.
They didn’t say when he was being sent home that we were looking at end of life.
I am finding it all very overwhelming as I expected him to recover from the illness.

The nurse in charge spoke with the GP and they have prescribed anticipatory end of life medication for him. They aren’t administering it yet but if he deteriorates rapidly then the medication is all there waiting to be used so he doesn’t have to suffer unnecessarily.

I have asked the staff if there are signs to look out for & if they will have an indication of when he may pass. They do offer beds for family to stay over at the end so we can plan ahead so he doesn’t die alone.
I have asked a few times if it’s looking like it may be time, just because of how poorly he seems.
They aren’t really giving clear answers and now I just feel like I’m in this awful limbo.

I’m struggling to sleep & constantly feel sick to my stomach.
Everytime I leave the care home I feel like he could pass at any moment as he looks so unwell.

It’s just such a lot of uncertainty and a time of high emotions
Any recommendations for how to try and cope during this phase or any signs I should look out for would be greatly appreciated.

Thank you for reading x

 

[Jane3]

Hi Rachel we are with you ,
I'm afraid it's a cruel limbo and no one knows the answer to how long. I had exactly the same question only days ago.
Someone directed me to you tube and hospice nurse Julie, its not easy to watch.
Mum is in a NH on EOL and like you said every one is very vague,.

 

[Rachelx88]

Hi Rachel we are with you ,
I'm afraid it's a cruel limbo and no one knows the answer to how long. I had exactly the same question only days ago.
Someone directed me to you tube and hospice nurse Julie, its not easy to watch.
Mum is in a NH on EOL and like you said every one is very vague,.

Thank you for your reply.

It’s just a horrible situation isn’t it, part of me is willing him to pass so he doesn’t suffer any further but then I feel so guilty for thinking that way. So heartbreaking to witness the demise of a loved one with this dreadful illness.

Thinking of you and your family x

 

[Jane3]

we are seven weeks in with mum, with so little fluid and food intake she is just fading away.

 

[Muggers]

Me too, I’m the same as Jane, it’s like living on a knife’s edge, can’t sleep, can’t eat, can’t go to work, just wait and wait some more, even the doctors are amazed that mum is still with us, no food for four weeks just little drinks of tea, weighs 4 1/2 stone, her bones are poking through her skin, I’m completely traumatized yet grateful for every second I get with her, it shouldn’t be like this though.
You are all in my thoughts xx

 

[Rachelx88]

My dad is still managing very small amounts of food & liquid at the moment. He chokes very easily though and I am concerned that his chest is worsening due to aspiration.
This has been an issue for a little while now on and off but he recently passed a swallow assessment.
It really is like living on a knifes edge.
I keep saying to my husband that we will have to keep riding this wave and see where we land, it’s so much easier said than done though.

Thinking of you all x

 

[Muggers]

My dad is still managing very small amounts of food & liquid at the moment. He chokes very easily though and I am concerned that his chest is worsening due to aspiration.
This has been an issue for a little while now on and off but he recently passed a swallow assessment.
It really is like living on a knifes edge.
I keep saying to my husband that we will have to keep riding this wave and see where we land, it’s so much easier said than done though.

Thinking of you all x

Bless you, stay strong. X

 

[SherwoodSue]

Please also know this. Many prescriptions for anticipatory medications expire before the medicines are ever used.

The prescription In itself isn’t the herald of impending doom.

It’s a just in case action.

Try to not cast your thoughts too far into an uncertain future.

For all you know the antibiotics may yet kick in or the infection may indeed become overwhelming, we just don’t know and that’s hard.

Your team are monitoring its their responsibility not yours.

I am on the same page as you. Mum on palliative care list with GP.

Thinking of you xxxxx

 

[weeannie]

Me too, I’m the same as Jane, it’s like living on a knife’s edge, can’t sleep, can’t eat, can’t go to work, just wait and wait some more, even the doctors are amazed that mum is still with us, no food for four weeks just little drinks of tea, weighs 4 1/2 stone, her bones are poking through her skin, I’m completely traumatized yet grateful for every second I get with her, it shouldn’t be like this though.
You are all in my thoughts xx

Thinking of you Muggers,
my mother-in-law is similar, surviving on chocolate mousse and ice-cream, only because they are the wrong consistency for her to spit out. It's heartbreaking, and it's been that way for over 2 months now. How do they keep going? Your mother is in my prayers x

 

[Muggers]

Thinking of you Muggers,
my mother-in-law is similar, surviving on chocolate mousse and ice-cream, only because they are the wrong consistency for her to spit out. It's heartbreaking, and it's been that way for over 2 months now. How do they keep going? Your mother is in my prayers x

Thank you weeannie, yes we did the sweet and sloppy food and the ensure drinks, once that stopped we kind of knew we were on a downward road, we can only give her sweet cups of tea now as she won’t drink water and any juice affects her paper like skin, couldn’t bare for her to get sore.
Stay strong.

 

[StressedDaughter]

Please also know this. Many prescriptions for anticipatory medications expire before the medicines are ever used.

The prescription In itself isn’t the herald of impending doom.

It’s a just in case action.

Try to not cast your thoughts too far into an uncertain future.

For all you know the antibiotics may yet kick in or the infection may indeed become overwhelming, we just don’t know and that’s hard.

Your team are monitoring its their responsibility not yours.

I am on the same page as you. Mum on palliative care list with GP.

Thinking of you xxxxx

You are correct. FIL had all the anticipatory medication at home. When the time came many months later, they were out of date and had to be re-prescribed.