Deterioration since Thursday

[Martha_k_uk]

On Thursday my dad had a 'funny turn' we are unsure what it was however since then he has been non-responsive, unable to speak, sweaty/clammy but no fever and his chest is clear.

The nursing home asked the GP to come out and see him and their response, just monitor him - we're not coming out today!! Thankfully dad's neuro-nurse was visiting yesterday so she telephoned the GP and quite sternly told them that it wasn't acceptable...half an hour later a doctor arrived!

After discussions with the neuro-nurse they both agreed that they thought it was a deterioration and we needed to consider how we approach the next phase.

We reviewed dad's advance directive and DNR, and have agreed that we are no longer going to treat any infections, and the neuro-nurse and GP have started the wheels in motion for a possible transfer to hospice.

GP has prescribed oramorph to help with pain, and baclofen for rigidity. When we left yesterday dad was back in bed and completely zonked so we left him to sleep.

I've hardly slept and can't stop thinking what if...this is really the end, what if...he bounces back. I need to ring the home first thing but i'm scared to.

Additionally, we have a good relationship with our local hospice. Dad had been visiting their day centre for the pas 12 months, and has only recently been discharged from there because he had deteriorated too much.

Anyway, yesterday the referral went through to the hospice and Macmillan nurses and I received a call from the nursing home to say that the hospice won't take him as he's out of area and we need to refer to a different hospice some 7 miles away.

We are all very upset by this, and of course as it's weekend there is no-one we can discuss this with. I will be arguing the case on Monday. When dad moved into the nursing home he had to change GP, the nursing home is right on the border of two different CCGs and at no time has anyone mentioned that he may not be able to go to the hospice with which he has an existing relationship. When he was referred for their day services, his GP at the time also did a referral for end of life care - I'm hoping this is the key to getting him a bed with them as everything 'should' be in place already.

Thanks as always for 'listening'

[Yvonneandgeorge]

Oh so sorry to hear this, if he had been going seems like common sense that he should be able to go back to the hospice, people say that things happen for a reason, I don’t agree with that, your dad is very sick, why can’t people just see that, I hope and pray you get it sorted out, sending you a big hug. Saying a prayer for you all today, isn’t psp stressful enough with all the hard work you have to put in to look out for our loved ones. Yvonne xxxxx

[doglington]

How distressing. I hope it all gets sorted. It seems so obvious that its better for everyone for him to go where he is known.

In general I found that being firm about what makes sense frequently works. I think "they " just blindly continue until they realise that you are willing to make a fuss. They don't want a fuss.

Good luck. Love from Jean xx

[Kevin_1]

Hi Haley

It sounds miserable and anxiety provoking in the extreme.

Your Dad is so fortunate to have you fighting for him.

I so hope he gets what he needs quickly.

Best wishes to you all.

Kevin

[Hidden]

When you make all the decisions that total rip your heart out and then to be told change of plan,you have to wonder sometimes about the powers to be.

Stay strong

Dee

[Martha_k_uk]

I've been to see dad and it's heart breaking.

He's in bed, can barely open his eyes, not eating or drinking. Breathing is rapid and shallow and he's sweating like mad. Other 9bs are all good though and he doesn't have a temp.

He seems likes he's just given up. I'm off to London tomorrow for a trip with my husband and children and I'm so worried about what's going happen whilst I'm away...I've got a terrible feeling.

[honjen43 in reply to Martha_k_uk]

Thinking of you and hope your day in London has gone well.

You have looked after your dad so well! Take a deep breath and go to your dad! He needs you for just a little longer.

Your dad does not sound well and seems to have made his decision. I hope he waits for your return. He will still hear you! Hold his hand and tell him it is OK for him to go. Tell him you love him and that you will miss him. Make sure the carers keep him comfortable. Play a little quiet music that he will enjoy.

Praying for you and all your family at this most distressing time.

BIG HUGS

Jen xxx

[Escada29]

Such a tremendous worry xx

[Spiralsparkle]

Massive hugs to you.

The neuo nurse sounds on the ball, maybe see if she can help talk to hospice on your behalf. Common sense doesn't seem to factor sometimes in the big wigs decisions where borders etc are involved.

Thinking of you and I hope Monday brings you some answers that you wish for your Dad

[LostinHeadSpace]

Ohhh. Thinking of you.

[margh2468]

Thinking of you, I too am dreading the day that must come

Hugs Marg H

[Katiebow]

Dear Martha I so hope that you managed to arrange for your Dad to get a bed in the hospice that already know him, it seems crazy that he may have to go to an alternative. I also hope you managed your trip to London with the family, you must feel you are being pulled in every direction. If my husband, Ben had deteriorated so much I wouldn't wish him to pull through, he doesn't want any medical intervention but to kept comfortable and as pain free as possible. Sending you love and support.

Kate xxx

[Martha_k_uk]

Thanks all. We are on the train to London now and won't be back until Wednesday

[Blots]

So sorry. Do you need to move him?

My father is probably not far off reaching that stage, and we aren’t thinking of moving him from the nursing home.

We don’t have a relationship with a hospice — if we did, it might be different.

[raincitygirl]

Sorry to hear that the "downward slope" has started the steep slide Hayley. This must be a horribly anxious time - with so much out of your control. Take a deep breath and hope you can appreciate the last kisses and touches, and dont lose all your last hours in organizing - you will feel cheated when its all over.

Bless you.

Anne G