My OH has become completely unresponsive

[Pouli]

Hi, my OH has suddenly gone from eating and drinking small amounts through the day, to eating and drinking nothing. Four days ago he sank half a can of coke with no problem, it went down without touching sides. Yesterday he refused everything. I managed to get a tiny bit of yoghurt into him and some milk. I tried to get a drink into him at midnight but I wish I hadn't. I think most of it went down the wrong way and he bubbled badly. I managed to get him to cough and when I checked an hour later he had managed to clear it and was breathing normally.

I don't think he moved during the night. And today he is just asleep. Well, I think he is more than asleep and unresponsive. The carers washed him, which normally brings forth a few complaints, but today nothing. I daren't try and give him anything.

I have the doctor coming this afternoon. I can't think of anything she can do. I don't want him taken to hospital and tubes pushed down. It would be too traumatic. I see from other posts that PWDs often go right down and then rally.

Can anyone tell me what the doctor is likely to do. And what is likely to happen to my OH now.

Thanks

 

[canary]

Im sorry to hear about this new development.
Im glad the doctor is coming this afternoon. You need to have a very frank and open talk with the doctor and tell him that you dont your OH to go into hospital (I didnt want this for mum either) and see what he says.

If he thinks that your mum has now reached end of life he will probably put her on palliative care so that she is kept comfortable and pain free, which would involve the district nurses. Please let us know what he says, so that we can advise better.

 

[Pouli]

Im sorry to hear about this new development.
Im glad the doctor is coming this afternoon. You need to have a very frank and open talk with the doctor and tell him that you dont your OH to go into hospital (I didnt want this for mum either) and see what he says.

If he thinks that your mum has now reached end of life he will probably put her on palliative care so that she is kept comfortable and pain free, which would involve the district nurses. Please let us know what he says, so that we can advise better.

Well, the doc came and checked everything. He says my husband is quite poorly, low blood pressure, poor oxygen stats. The only response was to the blood pressure cuff!! He always said they cut your blood supply off. The doc says he can't last long like this - no food, and more importantly, no fluids. He asked if I wanted him to go into hospital and have drips. That would be so traumatic. And the last time he had a NG tube they used to block it with meds they hadn't ground up fine enough. Then it was off to the endoscopy dept for a new tube to go in. The doc says the alternative is to keep him at home and comfortable. He will organise the anticipatory meds and I can collect them tomorrow. And also DNR. I've opted for this but I feel very guilty as if I'm not doing my best for him. But he is in no state to decide. The doc thinks he might have had a stroke over the last few days.

Really, this is no kind of life for anyone, and I think he is very tired of it. But have wept buckets because I feel I have doomed him. I never thought I would have to make a choice like this.

 

[marionq]

With you in spirit. That is a tough one but it is the decision I would make too.

Stay strong in the knowledge you are doing the right thing.

 

[Pouli]

With you in spirit. That is a tough one but it is the decision I would make too.

Stay strong in the knowledge you are doing the right thing.

Thank you. I really hope so.

 

[canary]

(((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Pouli

This is what happened to my mum at end of life too.
I think you have made the right decision too. Someone said to me about my mum that you can get to the stage where going to hospital etc doesnt preserve life, it merely extends death. It is far better to allow them to pass away peacefully, but it is hard to let go.

Your GP has prescribed the end of life meds - often called the "just-in-case" box, which is a small box that you can keep in the cupboard, so that things are ready for when they are needed. They are usually given by the district nurses and I think you will probably hear from them soon.

My mum passed away in her care home, I know that other people have passed away in their own home and members whose PWD passed away at home (eg @Sam Luvit ) may be able to give you more specific advice.

Make sure you look after yourself during this period - it is easy to forget about your own needs.

 

[Duggies-girl]

Well, the doc came and checked everything. He says my husband is quite poorly, low blood pressure, poor oxygen stats. The only response was to the blood pressure cuff!! He always said they cut your blood supply off. The doc says he can't last long like this - no food, and more importantly, no fluids. He asked if I wanted him to go into hospital and have drips. That would be so traumatic. And the last time he had a NG tube they used to block it with meds they hadn't ground up fine enough. Then it was off to the endoscopy dept for a new tube to go in. The doc says the alternative is to keep him at home and comfortable. He will organise the anticipatory meds and I can collect them tomorrow. And also DNR. I've opted for this but I feel very guilty as if I'm not doing my best for him. But he is in no state to decide. The doc thinks he might have had a stroke over the last few days.

Really, this is no kind of life for anyone, and I think he is very tired of it. But have wept buckets because I feel I have doomed him. I never thought I would have to make a choice like this.

Oh I think you are doing your best for him @Pouli It is what I would do for dad hard as it may be.

Stay strong and be kind to yourself.

 

[Sam Luvit]

Hi @Pouli

As @canary says, my mum passed away at home. Once the GP confirms End of Life, they should put you in touch with a hospice team. St Michaels were amazing for us.

The Just In Case box should be ordered by the GP, it was bigger than I was expecting, but I left it on a table with all the necessary paperwork. The District Nurse & Hospice Nurse had to complete paperwork on every visit, so have it easy to reach (a spare pen or 3 is also a good idea)

Mum didn’t want to go back to hospital (she had asked for that to be put in her notes in the last admission), so although standing there telling the doctor that “no, she is not going to hospital” was very hard for me, I knew it was better for her. She wasn’t going to come back out if she went in

This stage went in for nearly 5 weeks. The last 3 weeks I was expecting her to go at any time. If mum asked for food (which she might have done 4 times in 3 weeks), I gave her some. She only managed a teaspoon of yoghurt though.

You will be given mouth swabs to moisten his mouth. They were in short supply & I begged for more at every visit. Stockpile them, don’t wait till you are on your last one If you are running out, rinse out after use, with boiling water, then leave in fresh boiled water till needed again. Moisten with cooled boiled water. I was swabbing about every 20 minutes

Find someone to come & help you. You can’t do this but solo. It’s beyond tiring, both physically & emotionally

Ask the hospice team & the district nurse about a night sitter. Take all that are offered. You might be lucky & get one night from the hospice team, but a second one is only when you are on your knees

If the GP has confirmed End of Life, they should apply for CHC. That should include up to 3 night sitters a week. They arrange one, you have to ask for the others, just at a time when you can’t face another fight. The care agency should fight that battle for you

Keep posting & I’ll keep thinking of what else might help, I’m sorry, it’s such a hard thing to go through

 

[Maggie]

I've witnessed a person at this stage slowly given thickeners mixed in diluted juice.

Do you have a dementia nurse?
who I am sure would know about this more, then I can explain it on hear?

 

[canary]

@Maggie - I think that Poulis OH has gone beyond that stage.
What you have described is useful at the severe dementia stage when the ability to swallow is poor, but once you reach end of life the body is shutting down and does not need food or fluid. In fact, at this stage it cannot process it and so it can actually cause pain.

They are not dying because they are not eating or drinking - they are not eating or drinking because they are already dying.

 

[Maggie]

@Maggie

They are not dying because they are not eating or drinking - they are not eating or drinking because they are already dying.

Apologies I was not implying that.
Thank you for explaining.

My Mother with cancer was like that
moisten to her mouth with a swap when dying from the Cancer.

So I never saw her dying from Dementia at the very end stage of life.

 

[canary]

My Mother with cancer was like that
moisten to her mouth with a swap when dying from the Cancer.

People dying from dementia are the same
Its a difficult time.
x

 

[Maggie]

Hi @Pouli

As @canary


This stage went in for nearly 5 weeks. The last 3 weeks I was expecting her to go at any time. If mum asked for food (which she might have done 4 times in 3 weeks), I gave her some. She only managed a teaspoon of yoghurt though.

I read this, So was thinking of the thickness with Juice that we give the person..

 

[love.dad.but..]

I like many had to make that decision for dad at end of life. You are not letting him down you are continuing to make the best and kindest decision for him. It is a tough time and hopefully the end of life meds will keep him painfree and comfortable but don't hesitate to seek help from GP...hospice...district nurse etc. Dad was in a NH so he had that constant care around him at end of life. Good advice from Sam and Canary for you.

 

[Pouli]

Thanks to Sam Luvit Canary and all the others for your good advice. Two nurses came round with another box of stuff and some paperwork. Then I should get the actual Just In Case box tomorrow. And the paperwork. My OH seems quiet and settled tonight so I hope he stays like that.. I've been warned not to try and give him any fluids. I know of old that he wouldn't drink that thickened stuff. He spat it over the nursing staff when he was in hospital before. It's ok - if you like drinking jelly. My children seem to agree with my decision as well as members here, so I feel a bit cheerier that i've made the right one.

 

[Maggie]

I always wondered what it would taste like!
`
Just wanted to send you my heartfelt love at this time.
Even though I do not know you xxx

 

[nitram]

My children seem to agree with my decision as well as members here, so I feel a bit cheerier that i've made the right one.

Can I add my support.
In addition to the already mentioned phrase ' not dying because not eating but not eating because dying' I'd like to add 'dying is the final stage of life'.

I found the 'just in case' syringe driver plus mouth swabs excellent.

 

[Maggie]

Another Support ...

I would like to add also.
When I was with my mother at the dying stage, a doctor told me hearing is the last sense to go in the dying stage.
So keep talking xx

 

[Pouli]

Thank you Maggie and Nitram. Every bit of advice is welcome.

 

[Sam Luvit]

Yes, I talked to mum all the time, about anything & everything. It’s a bit hard thinking of that now, but ...