Loved one in hospice - CHC funding?

[GlitterNails]

This thread is part advice, part hand-holding and talking about what has happened as it helps.

My very loved 101 year old Grandad is currently in the hospice after developing a UTI, that turned into sepsis giving him heart failure. He was treated badly in hospital. For example the paramedics put a canular in his hand ready for antibiotics on arrival as it was obvious what was wrong after finding him on the floor. The hospital left him in a corridor all day and all night, and only gave him antibiotics the next day.

After two weeks he was finally moved to hospice where I felt he was much safer. They have been much kinder and humane to him. We were told he didn't have long.

However on day three of being at the hospice we were told if doesn't get worse they will look to discharge him which was quite a shock to me. I thought he would be in the hospice until the end - but that was my ignorance.

In the last three days to the family he has declined a lot. He is struggling with light, noise, struggling to swallow, refusing food and his drink intake has gone from cups of drinks to a sip of water every few hours. He was entirely mentally there until then - but he has been saying odd things in the last few days - although other times is okay. He was holding conversations and remembering things, but now sometimes he struggles to give yes/no answers and doesn't remember much.

He is refusing to be moved, refusing washes and more but he is covered in sores from the hospital.

The hospice have said if he is still there Friday they will look to discharge. He has been very clear he doesn't want to go into a nursing home.

We hoped to try and get continuing health care funding for 24 hour care but understand this is very difficult to get. I've been told by someone who tried years ago it's very difficult to get 24 hour care in our area.

I don't know what they look at and if he will qualify.

I'm just finding it incredibly difficult currently. He desperately wants to die and has made that very clear - but somehow he's still hanging on against his own will. In some ways I'm hoping he goes (to end his suffering) before it gets to discharge because any other option he will find torture. He wants to stay in the hospice and die but it seems his wish doesn't come into it.

Until this happened he was living independently, looking after his own house and more mobile than me. I find it hard when people say things like he's had good innings as his age doesn't change my feelings/grief at watching him go through this.

Hey.
I have no experience or preferable advice really to the situation.
I just didn't want to read this and just scroll back.. If anything it's more of a virtual hug!
How awful to be experiencing this and to see your grandad detoriate like this - so quickly too.
I'm so sorry he wasn't treated with the dignity and respect he should of received in the hospital, and rightly deserves.. this may be worth a complaint when you feel mentally up to that battle.
He sounds fed up - bless his heart.. and I probably would be too!
I really hope between yourselves, the hospice.. that you are able to sort something out that puts everyone at ease to some extent by Friday.
It's never going to be nice seeing any loved one like this - so I'm sending heaps of love to you and your family. I'm sorry I can't be of much use when it comes to advice RE funding, hospice etc. Please keep us updated ❤💙

Thank you Justwingingitox. It looks like we won't have the CHC fight on our hands by the turn of events last night/today.

Last night he wasn't really making sense anymore, today it's like he's not 'there'. It's not really like sleep as his arms are waving about, his face is twitching but he's not responding to voices.

They have increased his pain meds and given him something to reduce agitation.

His hands are cold and the tips are going blue. His breathing is changing from deep to very fast and shallow.

There is no spare side room for him which they kept promising. So looks like he has to die in an open ward with people watching.

That sounds difficult but hopefully the staff will pull curtains around and give him some privacy.

@GlitterNails I'm so sorry to hear this sweetheart.
I really hope they manage to provide a side room. Or at least as PP said, be able to provide him with some privacy with curtains pulled around or something.
Thinking of you xx

Yes they do pull the curtains round when family are there. It can't be nice for the other patients though who all have terminal illnesses having someone die next to them. And when we are upset there is no privacy.

It's still all a million miles from the hospital though, which I'm grateful for.

It is correct that the hospice tell you they're not a long term place of care but He should be there two weeks as a starter.
Also his PPD (preferred place of death) definitely should come in to it.
They can't discharge him until he is "medically stable" with all symptoms controlled.
It will be Fast Track funding that the hospice should apply for, which is for anyone palliative, is not hard to get, but you should be aware that it is reviewed at 3 months and then a year.

I'm sorry, I have just read your update.
Open ward in a hospice?!

Yes - they seem to have two big wards for each gender, and then individual side rooms. They are currently using side rooms for new patients for three days due to covid. So he started in his own room and we thought that was where it would be and was shocked when he was moved. (I think if they had warned us it would have been better)

Particularly as there is a stark difference between him and the others on the ward. All are clearly unwell (obviously, it's a hospice!) but are sitting in chairs and talking fine/doing crosswords and eating/drinking normally. Most seem to be in for a short stay for symptom control. So before he was moved I assumed the ward was for the slightly more 'well' patients as it were.

Up until today my grandad has really struggled being on the ward. He was really struggling with the light - and the whole ward has been in darkness for three days - which is very kind of all the others in the ward. He was also wincing at every noise and although no one is being loud - lots of things are going on in a ward and he was jumping/wincing. He also developed a constant cough which is apparently down to his swallowing deteriorating.

This was particularly why we wanted him to have his own room and they kept saying he would after the weekend but they were prioritised for both new patients, and those actively dying.

Today I asked again as I feel he is now he is in his last few days - and they said they have two new patients coming in, and the rest are being closed for refurbishment this week!

Since his deterioration today he isn't wincing at the noises/light anymore - but has periods where he clearly in pain or agitated before they come and sort it, which is the part I don't think it's nice for others to see.

@GlitterNails I'm so sorry you're going through this. The hospice I used to work (RN) did have a 2 bedded bay and a 3 bedded bay but these were either for couples or people starting to think about discharge.
I completely agree with you that it may not be nice for them, but I think hands are probably tied. My advice would be if you're at his bedside, to ring at any changes so they can administer medications in a timely manner to keep him comfortable. Also, ask if you can give him regular mouth care to keep him comfortable and last but not least, engage in the bereavement support offered by the hospice xxx

Sorry you are going through this , I lose my lovely dad a few weeks ago due to urinary sepsis , he had Parkinson’s and just couldn’t fight it off and then developed pneumonia - it’s good to know they are keeping him as pain free and comfortable as possible

Thank you. He has quite a big family so we are doing shifts throughout the day as it were due to restrictions on amount of visitors at one time.

He does have mouth care and we are regularly requesting pain relief if he shows signs of pain.

I also did set in motion the counselling offer yesterday which will be helpful.

I am so sorry for your loss. It's just so hard, isn't it?

May I ask how long it was between him getting the infection and passing?

He was admitted on a Wednesday and he passed away the Tuesday of the following week , they tried various antibiotics but nothing was working and his swallow had failed with Parkinson’s etc so we decided no more treatment and asked for him to just be made comfortable on the Sunday. I miss him terribly but it was a blessing really as he was in the last stages of Parkinson’s and wouldn’t have wanted to become totally bedridden etc. He had an awful few months in and out of hospital over the summer with one infection after another so it’s a relief really that he is free from pain and at peace as much as it hurts us left behind.

Hi OP. Im sorry you're going through this.
Your granddad should be assessed for Fast Track CHC funding, which is the funding steam for those at end of life.
I cannot say if this would lead to 24hr care, as there will be variables depending on area etc.
The MDT at the hospice should be discussing this with your granddad and family regarding how his care will be managed once he's home.

Yesterday I sat by him googling symptoms trying to work out what stage he was at. I said to my family I think he's in the final stages at got three days maximum.

I obviously had asked about the side room and was told no. I asked if he was final stages and didn't get a clear answer.

Today we have been told he's got 1-2 days and is now being moved to a side room.

I am a little frustrated as while everyone at the hospice is nice - they always seem 1-2 days behind the family and I guess with their experience I thought they would be guilding us instead of me having to Google articles on death often written by other hospices!

My aunt is staying overnight now and will call us if she thinks anything is happening. I will be with him all afternoon now.

Make sure you look after yourself too and take shifts so you can get some rest , it’s unbelievably exhausting sitting by a loved ones side but you need to make sure you are kept well too.

The team are there for you all so make sure they give him pain relief as soon as he needs it etc

Thinking of you x

Thank you. I'm disabled myself so it's been very difficult. I rarely leave the house let alone almost every day.

At the hospice now and he's finally in a lovely quiet side room. His face looks so different.

His breathing changed when we arrived which I took as him knowing we were there. The nurse then arrived and asked if he wanted a wash and he shook his head - so he can hear still.

He will know you are there I am certain of that

Got a call in the middle of the night to say his breathing had changed. It was quite surreal as his breathing would often stop - we would all look at each other, then it restarted.

By 8.30am I was fading big time and his breathing was back to how it was. Mornings are my worst time and I thought if I stay, it will be hours and if I go it will be soon. I had to leave though - was sick in the car park and drove home. Went to bed. Woke up and got a call to say some of the family were going to head home for a little bit. Two minutes later got another call to say he was gone.

Sadly one of my aunts was two minutes too late getting back to him.

It's still not hit me properly yet. I am so glad he is no longer suffering, but I can't believe I don't have my lovely Grandad anymore.

@GlitterNails I'm so sorry for your loss. Sending lots of love and thoughts ❤