Can someone tell me about hospices and what to expect?

[oneofsuesylvesterscheerios]

My dad has got an undiagnosed condition that is similar to motor neurone disease. He's been in hospital/intermediate care for the past 3 months and came home last week but has seriously deteriorated and it's only a matter of time before he needs help with feeding etc.

My previous thread is here.

So now the GP has said what we all knew really but hadn't voiced : that this condition is going to result in his death, sooner or later, and as it has only taken 8 months from him being fit and healthy to wheelchair-bound and hardly able to use his hands, I'm not that hopeful of anything past 6 months to be honest. The GP has now referred us to the local hospice and a nurse will be in touch next week. But my mind is racing and I don't know what to expect.

At the moment he has care twice a day which he pays for. Now they have confirmed that he is sying, will he have any additional care or again will he need to pay for it? Sorry if these seem like stupid or crass questions, but he will be wondering this as well and I'd like to be able to speak to him about it tomorrow.

dying

At my local hospice here it says that patients don't pay as it as a charity ... i presume all are the same?

ps there is a helpful link at the bottom of the page that should help you find on the web your local hospice

Thanks mrs pear. I found the page of our local hospice and it says the same as you said. But does that now overtake the care he already gets now they have decided he's dying from this condition? Who will provide the carers for getting him up and washed etc?

I assumed he'll still go on paying for this and the hospice will just provide the counselling and maybe some palliative nursing care?

I'm so confused.

I would maybe give the hospice a ring? We did this with my BIL and they were really helpful, even before he had to go in. They should be able to help you with benefits too as you do lose some if you go into hospice care. So sorry that you are going through this.

I'm sorry to hear about your dad - the local health authority normally pays a day rate to hospices which normally covers the cost of care although of course donations are welcomed.

They tend to offer a mix of single rooms and wards and visiting hours tend to be unlimited to allow visitors where appropriate. Most are staffed by Macmillan nurses but they also have general nurses and doctors visiting. Larger hospices have full time doctors.

Generally, you will be asked to keep in touch with the hospice so they know when to expect him. They are used to rapid deteriorations and changes of plan though.

It's worth asking them under what circumstances (if any) your dad would have to be transferred to hospital or if they'd just deal with things there and then.

You'll have to set out a care plan, how you can be contacted etc. All the obvious stuff.

A lot of people find it helpful to take in their own stuff, blankets/pictures etc.

Don't worry, they will know the state you will be in and will give you all the information you need, as many times as you need it before you take it in.

Good luck. To both of you.

Sorry to hear about your father.

My brother stayed in a hospice a few years ago when he was in the late stages of brain cancer aged 50.The care he received was attentive and kind.As a family we also felt cared for especially his young sons. He had periods of staying there over his last few months alternating with time at home and a local community hospital.

I think with your father he will have his needs assessed on a daily/weekly period where he may need the extra care and pain relief in a hospice but may also have time at home if he and family are able to cope.
Hospice care is completely free of charges.

My thoughts are with you at this sad time x

Thank you so much.

My dad is being so stoic. I noticed he hadn't done his crossword since he came home and realise it was because he can't really hold the pen anymore. So we did the crossword together this afternoon and had a good laugh.

But it's breaking my heart.

I'm so sorry to hear what your family have been going through. Both of my parents unfortunately had to use the services of a hospice (Marie Curie). I was absolutely dreading setting foot in the place for the 1st time but actually was pleasantly surprised. It was a very peaceful but not morbid place and the staff, I am convinced, were angels in disguise! They had exactly the right balance between acknowledging what a terrible situation the family is in but at the same time not dwelling on it unnecessarily. The patient often just wants to feel as "normal" as possible. I can remember my Mum having a wheelchair race with one of the nurses at 1 point in the corridor .

All of the services there were free and they even managed to give my Mum the odd session of complimentary therapy I think. Sadly the Marie Curie hospice my parents were in has closed & my Dad passed away in 2001 & my Mum in 2003. I can really understand how you must be feeling watching your Dad deteriorate. My parents both had cancer so not the same at all but still a deterioration. My parents were only in their early 50s when they died. Very sad but am eternally grateful for the hospice.

My Dad was nursed at home mostly. We got a hospital bed with proper air mattress and converted one of the downstairs room to his bedroom. We used to have nurses coming in & out to help with whatever he needed at each stage. This was all free (although I guess this was back in 2001 so maybe things have changed?). We also used an excellent charity called "Crossroads" who are "carers for carers" and basically come in for a couple of hours to give the family a break. We also had Marie Curie nurses occasionally at the house overnight to give us a rest.

Bit waffly - sorry about that - but hope it helps!

Not waffly at all. Really helpful.

He lives on his own but not far from me - only a few miles so I've been going round every day. He's been given one of those hosiptal beds and quite a few things to help with bathing, toilet, etc. and he's getting an electric wheelchair delivered next week.

Like he said today, we just have to deal with each thing as it occurs, day by day. I agree, but it doesn't stop my mind racing ahead.

Completely understand the racing mind thing. I found that not knowing what was going to happen & when really difficult to deal with. Especially when you have had no experience of it.

Its a question of changing goal posts day by day. My Mum & Dad used to have good & bad days so we would try & make the most of when they were feeling a bit better. On a good day, Mum would decide on a mission for the day which might be something as simple as going to the florist in her wheelchair. One day Dad spentt several hours mustering up the strength to press a button on the remote to switch the radio off! So difficult to watch!

I really hope you have some supportive & understanding friends who will be there for you. In these situations it is often harder for the family to watch I think as you feel totally helpless.

Thanks. Yes, I have some very good friends. I will call on them when I've got my head round the initial shock. I haven't told my brother or dh yet. Dh is away til Monday and don't want to tell him on the phone. He loves my dad to pieces. My brother is abroad. He will be gutted but also don't know if I can 'be the strong one' just yet when I tell him. I'm always the strong one and I don't want to be at the moment. It's taking enough strength to keep a lid on it in front of the dds. I nearly lost it in town today when we saw a display of 1950s dancing and it made me think about him when he was young. Had to pretend I was having a coughing fit to explain the tears running down my face. I can tell dd1 is worried (she's 8). They can see he's getting worse because of the physical symptoms but they don't know that this will kill him yet.

But it's a relief to think the hospice are so knowledgable about it all. I do feel like I've been pissing in the dark throughout this whole illness and feel very out of control, as every time we get something sorted, dad gets worse and we have to rethink everything. It will be good to have people to talk to and be able to rely on them to know what to do.

The nurses at hospices are so experienced about how to talk to children and will advise you on the best way to approach your little girl. Like you said she is worried and is probably working out in her head what is going on. But at that age sometimes they get it so wrong so it is best to try talking to her soon.

If you want to cry,just let it out. I did listening to the xmas songs in the shops and someone just stood with a hand on my shoulder.People accept grief which is what you are experiencing now. Its a process of letting go of someone you love. Accept any help you are offered by anyone and avoid people who are demanding of your emotions.

Hi. How are you feeling today? I agree with jaffacake in that you need to let your tears out. Its very important I think. When you go through something like this, it is very much like you begin the grieving process while your loved one is still alive as you are grieving for what they were & seeing them deteriorate before you is so hard. Remember even "the strong one" needs to cry. It would be strange if you didn't! It is also completely normal to be affected when you least expect it. These things creep up on you & catch you unawares. I still feel like that even now sometimes!

Again, agreeing with jaffacake in that you need to avoid people who are demanding of your emotions. You have enough on your plate.

Thanks for your concern

Dad and I spoke about it today and I'm really glad we did as I don't think he'd really grasped the reality of what his GP had said. Maybe it was the shock? Only when I went over it again I saw his face change and he actually broke down and I hugged him and cried myself. He said that we should have really known all along that this would be the end result: if your muscles are gradually giving up and you can't move or feed yourself, then you know what's coming... but it's like we 'needed it in writing', as he put it.

The more we spoke about it, the more we realised that everything was pointing towards this at the intermediate care unit: he'd stopped having physio so much; they'd automatically signed him up for an electric wheelchair; they were sure we'd need 4 visits from carers per day (we refused, 'safe' in the knowledge that dad would cope with 2) and every decision we made about his care package was greeted by the OTs and physios with 'well, let's see how you get on shall we?'. They obviously knew where this was all headed but presumably they didn't voice it as we still have no official diagnosis.

I don't spose any of them could be wrong could they? If it's not MND, it must be its twin, as the result is going to be the same. It's all too cruel.

I told dh today and he came back early from his weekend away. It's so good to have him back. and I started the phone calls to family and friends tonight. I couldn't manage too many, it was so hard. I told his niece, my cousin, though and she is going round to see him tomorrow morning, which he'll enjoy.

I keep getting palpitations, which is what I got last year when I was very stressed. They'd eased off until now. I'm ok though; been talking loads to dh and have had a good cry several times tonight.

I'm sorry you're going through this.

My experience of hospice care (both personal and professional) has been very positive. They are really special places and not morbid and miserable as you'd expect. They are so geared up to end of life care and really treat the whole person and the whole family, after all very few people die in isolation.

I found the staff so caring and thoughtful and they weren't remotely fazed by tears, tantrums and all the associated emotions that impending death brings (both Dad's and ours!).

Wishing you peace and strength

I'm so sorry, it's dreadful. On the admin front, and ringing round - can you delegate in some way. We had a system where I told one person, then that person told 2 more, and they told another 2. It saved time, and I found it much easier only having to go through it once.

Do make sure you remember to look after yourself too.

Sorry to hear about your Dad.

My Dad died in our local hospice 2 months ago, he had agressive prostate cancer. They were beyond amazing and took the awfulness out of it.

Dad was admitted on a Tuesday for monitoring but his kidneys started to pack up on the Friday and from that point he wasn't on his own for a moment. The hospice let my sister and stepmum both stay overnight in the room for the next few nights until he passed away on the Weds morning. They were able to do some basic care for dad like helping him sip water, adjust his pillows etc and make sure he wasn't trying to battle on without pain relief. The nurses were always on hand for anything he needed but it helped us all that we could spend the last days with dad looking after him.

The hospice were so welcoming to everyone who came to see Dad, he was pretty drowsy but always perked up when someone popped by to say hello. No visiting hours, free tea / coffee and cakes in the day room for patients and visitors. They had a playroom for the DC's and a pretty garden for them to dash about in.

It turned out that a lot of the staff had had relatives who had passed away in similar circumstances so they were so understanding of what we were going through.

It's still a heartbreaking time but I hope (and expect!) that your local hospice is a good as ours so you can be left to make the most of what time your Dad has left rather than chasing up nurses or stressing about
visiting hours.

Take care of yourself too. It goes without saying it's a tough time and it can surely never be easy for anyone but just eat as well as you can and rest when you can.

My dad died in the local hospice in May and I agree with everything said here about hospices.
They are often underfunded and rely on charitable fundraising. Everything is free. Some have only day care and some have beds. Ours had a large day unit but only a hanful of beds and most patients wouldn't be expected to stay more than a couple of weeks, either for respite or to die.

My dad was admitted for respite initially but it soon became clear that he was not going home and he died after 10 days. (Just 5 weeks from diagnosis).

The hospice care for the whole family. All the staff from medical and support to admin were wonderful. They gave me advice on helping the children cope and still keep in touch with mum.

They will let you know when the end is near so you can stay 24 hours. The last couple of days they looked after us all as we sat by his bedside.

Not everyone is lucky enough to be able to get a place at a hospice but if he can then it's the best possible option. It allows the family to do the "fluffy" stuff. Just sit and chat or keep him company. At home even with carers you are ragged with fear and running around.

This is making me cry.

One of the (many) things that was painful was that dad was a great reader and we had the same taste. He too was stoic and cheerful to the end. I took him a new book one day and he smiled and thanked me. It was only later I realised he could no longer hold a book in his hands...

inthesticks I think you put your finger on it saying it leaves the family to do the 'fluffy' stuff . We were so relieved Dad didn't end up in the grim main hospital with all it's restrictions and noise.

We have been told we can return for counselling at some point in the future. I was going to offer to sort out the playroom too.

Thanks again for all these posts; they truely are helping me with what to expect. We haven't heard from them yet but I guess it will take a little while as the GP would have only referred us Fri afternoon or this morning.

I'm still very confused about a few things but I'm hoping the hospice nurse will be able to answer my questions.

Does hospice 'care' take over from the come care dad's been having now that they say his condition is terminal?

And I still find it hard to accept that this will actually happen, as we still don't have an official diagnosis. It's plain to see that he is deteriorating but how do they know he'll definitely die from it if they don't know what it is? And WHY don't they know?? It's exactly like MND in the way it's affecting him but the neurologist says it isn't. Could it be a mistake?

Didn't sleep very well though and my heart's still racing. But I've had a very quiet day at home today and dh has gone round to see dad and to give him a shower. Dh is brilliant. I feel like I do need this quiet time; it's almost like time to breathe.

No the hospice won't run his care at home though he may be able to go there for day care one or more times a week. However you will find they have a wealth of knowledge and patience and should be able to answer all your questions. The hospice tend to have their own doctors who specialise in care of the dying and they will want to see him to assess his needs.

His care at home is generally coordinated by the local district nurse who liases with care workers, occupational health etc. My dad had cancer so macmillan were involved (though my experience of them was not good).
Not sure who it would be for other illnesses.

Thanks. I'm sorry your experiences weren't good and I'm sorry for the loss of your dad.

I'm still very confused. Do we now have to increase the nursing/care at home now (through the agency)? sorry for all the questions. Will the nursing care replace the agency carers who have been getting him up, washing him, etc? They're not medical, obviously. Do we have to pay for the nursing?

I've got a feeling the macmillan nurses will still be involved. My neighbour used to work for them and said they work from the hospice and they would cover my dad's illness too.

I wish i could ring one of the specialist helplines or websites. The MND website looks really helpful but he hasn't got MND. Just its evil twin