What are hospices like?
At present my dad is being cared for at home, but he's deteriorated a lot in the last week and his nurse, who is attached to the local hospice. has suggested that he might need to go in there if they can't get his pain management under control. He really doesn't want to do that and of course his wife and the rest of us will do whatever we can to help him stay at home, but we all know it might reach a time soon when he needs full on nursing care.
I broached the subject today and think I've managed to convince dad to go and have a look around and visit for the day. At least that way, if he does have to go in suddenly, it won't all seem so foreign to him.
But I have no real idea of what hospices are actually like. Are they flexible about visiting hours? What's the atmosphere like? Is it a better standard of care than he would get in hospital? Dad got very frustrated by hospital because it seemed to take so long to make any decisions about anything and he never seemed to see the same doctor.
Seeing him today was heartbreaking. It's weird how one thing can make such a difference but for me it was the fact that he was in his pj's and dressing gown. He's always got dressed during the day before, regardless of how ill he was. And he's lost so much weight. It suddenly felt like he'd reached a stage where he was accepting of what was happening to him. Well I thought that but later on he was trying to get down on the floor to fix an aerial and was so stubborn about it. It must be so hard to have to sit and feel helpless.
I broached the subject today and think I've managed to convince dad to go and have a look around and visit for the day. At least that way, if he does have to go in suddenly, it won't all seem so foreign to him.
But I have no real idea of what hospices are actually like. Are they flexible about visiting hours? What's the atmosphere like? Is it a better standard of care than he would get in hospital? Dad got very frustrated by hospital because it seemed to take so long to make any decisions about anything and he never seemed to see the same doctor.
Seeing him today was heartbreaking. It's weird how one thing can make such a difference but for me it was the fact that he was in his pj's and dressing gown. He's always got dressed during the day before, regardless of how ill he was. And he's lost so much weight. It suddenly felt like he'd reached a stage where he was accepting of what was happening to him. Well I thought that but later on he was trying to get down on the floor to fix an aerial and was so stubborn about it. It must be so hard to have to sit and feel helpless.
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The patients all had a room of their own with a bathroom and a Tv. Personal items were welcomed and the nurses were without fault.
When they knew my father (Who was bedridden and barely conscious by the time he got there) was recieving a lot of visitors they would go in and freshley wash and shave him. They would even put some aftershave on him.
There were grounds to take more well patients out into and a day room with many activities.
I can't emphasise the difference in care from hospital to hospice. That is not to criticise the hospital care, just the focus of hospital care is recovery. The focus of a hospice is patient diginity and comfort. The pride they took in his appearance was the thing that struck me most, just because he cared so much about that.
I've recently lost my mum to cancer, and she spent her final 2 weeks in a hospice so hopefully my response to you will help, in some way.
visiting hours are 24/7.... at least they were in the hospice where my mum was. you can visit any time of day or night, and obviously, you can always phone them too.
I cannot fault the standard of care given to my mum. It was SO much better than what she received in hospital.
Hospices have a "nice" (nice probably isn't the word, but you know what I mean) atmosphere about them, everything is very relaxed, calm, etc... so much different compared to a hospital.
Wishing your dad all the best x
thankyou hugsie. that's very reassuring. Dad has always hated any loss of dignity.
My sister-in-law passed away in our local hospice a few years ago and I couldn't praise them highly enough. Nothing was too much trouble for the family, even after she had passed away you could still go there for support.
The care was so much better than the hospital where they just left her as they couldn't do anything for her. In the hospice she was given better pain relief, massages, aromatherapy, pretty much anything she wanted making her last days (and this may sound odd) pleasant and relaxing for her.
Rules may be different in different hospices but the family was able to visit any time of the day, I think they had to leave at about 10.00 pm apart from on the day she died when they stayed with her until the end.
She had her own room so the privacy was good too, although there were some rooms with 6 peple in them who were there for respite care rather than palliative care.
Our experience of a hospice was very positive. My mother in law spent about three weeks in one, and she was extremely well cared for. Visiting times were very flexible, as far as I remember we could go more or less anytime, except for maybe an hour in the morning when they were doing the rounds. We could stay till about 9.30 at night. She was in a 3 bed room but others had single rooms.
It was very comfortable and the atmosphere very easy going, the staff were fantastic, nothing was too much trouble. There was a creche area where you could play and keep kids occupied when you visited, and they were allowed to take toys into the ward. They had a quiet room, a tv room, a library of paperbacks, daily papers delivered....everything seemed to have been thought of.
Foodwise they appreciate that people's appetites are off, and that taste buds change with medication, so there was no set menu. They had a well stocked kitchen and in house cook, so she could have whatever she fancied, to encourage her to keep eating. So if she fancied a prawn sandwich for breakfast, or a porridge for supper, thats what she got
They were excellent at maintaining pain relief and the hospice had a core staff so she got to know them all very quickly, even though shifts changed there was always consistency.
We knew from the outset it was terminal and she wanted to be at home for the final weeks, but being in the hospice really built her up in terms of strength and confidence for that last spell at home.
I would urge your dad to jump at the chance if he is offered a place. At the very least go and visit so he can see for himself. The level of care is really fantastic, its more like being in a private hospital ! Everyone is given so much personal attention and treated with patience and dignity. Maybe we were particularily lucky but our local hospice really does have a good reputation and is a very worthy and well supported local charity. I hope you will be equally lucky:)
I think that my father may have lived a little longer and with more comfort in a hospice, but due to a breakdown in communication his move there was delayed.
I cannot fault the hospice care he recieved, they called my mom with updates when she could not be there and were welcoming and comforting when we were there.
It was exactly as I would hope. The other thing I recall is the hospice my father was at also did respite care for terminal and degeneratively ill patients. There were so often children visiting and so many of the rooms were filled with love and fun and laughter. You could always close your room if you wished, but the atmosphere was one of life and love and care, not death and loss.
It was a good place.
That sums it up for me too:).
I just wish she had been moved there a couple of weeks earlier, as soon as she was told it was terminal cancer, so that she would have had time to appreciate the place. As others have said, it was more like being in a private hospital; she had her own room, I was able to stay with her 24/7 until she died. They had facilities for guests to shower and sleep although I chose to sleep in her room because she wanted me there. There were beautiful gardens outside which she would have loved to sit in if she'd got there sooner but she simply wasn't up to that by the time we arrived. Visitors had their own kitchen to make tea and toast or microwave meals if they chose to. It was calm and totally patient centred. They even had a smoking room for patients (on the basis I guess that giving up at this point wasn't worth the aggro) - visitors weren't allowed to use it though.
I had thought before we got there that it would be depressing and final but it was a wonderful place and I'm so glad she ended her days there rather than in the bloody hospital.
I know it's not place you want to visit but it was relaxed and the nursing staff were brilliant. There were no restrictions on visiting hours.
It's actually easier on the family as the stress of him living at home was removed.
I hope everything goes well for your dad.
it is.
But it's been really reassuring to read all these positive comments about people's hospice experiences too.
The nursing care is different from a hospital and the nurses have more time to give the care essential for the patients. On of the highest priorities is pain management-this does not mean doping the patients up,but keeping them comfortable and aware.
A colleague died a few weeks ago in a hospice after being in a general hospital. She was overwhelmed by the care she was given.
OP, I would give the idea serious thought and consideration.
Good luck.
He was in immense pain, he was refusing to take his medication properly, he was getting bedsores and hallucinations from the morphine, all in all he was in a terrible state and most of his care fell to my mum who was getting ill herself with stress and lack of sleep.
It was the GP that finally said enough is enough and arranged for him to go to the hospice. It was bloody awful my grandad got terribly upset at the thought of going into hospital and quite angry too and was behaving really out of character, swearing and getting agitated, my mum was crying too as we all were.
When we arrived though, he really calmed down when he saw his room and how 'unhospital' it was. For the staff working there it really was a vocation and not just a job, every single one of them was lovely.
I visited him on the evening and he was like a different man, they'd got his morphine and meds sorted, he was pain free, comfortable, no longer aggressive and hallucinating, freshly bathed and shaved and sitting up in bed laughing and joking with the lady who'd brought him a cup of tea.
Sadly he passed away the following evening but that hospice ensured that he died with all his dignity back intact, something he'd very much lost in the previous weeks because of the pain he was in and the reluctance he had in letting my mum wash him, feed him and help him, he didn't want my mum seeing him so helpless but he didn't want to go into some cold souless hospital either. The hospice was perfect and I can't praise them enough.
It's very common with hospices to find a lot of relaxation and complementary therapies, like massage, aromatherapy, reflexology. Spiritual and emotional care also tends to be key, whether that's religious or more secular with counselling for both the patient and family.
Most hospices won't take a patient long-term - they're not nursing/care homes - usually a stay will either be for a certain period for a specific reason (ie getting symptoms such as breathlessness under control) or in the last few days of life, which is obviously a finite length of time. This is to help the hospice support as many people as possible, rather than taking on long-term residents. Patients who aren't in their last few days are often offered some of the non-residential services like a day hospice or sometimes help at home.
I've just finished work on a website for Pilgrims Hospices in east Kent, and from my experience getting to know the charity and its staff it's a completely invaluable service. Really, care and dignity for those with life-limiting illnesses is second to none and the work they do is amazing.
My great aunt had all her rings taken off her fingers and we were told by nursing staff that they put in the hospice office safe.
When she died we asked for them and guess what, they were missing.
It took weeks and a threat of police involvement to get them back.
Suddenly we received them along with her watch and her not suprisingly empty purse which they never told us they had taken from her.
We were told that the items had been stored off the premises for safe keeping. Yeah right.
In contrast the hospice my mother died in was lovely. The pallitable care nurses just couldn't do enough for her.
She was comfortable, painfree and clean and the whole place was serene and pleasant.
One thing I really appreciated was their honesty. When I asked if it was the beginning of the end they told me straight. His doctors in the hospital wouldn't answer that even when we were packing his bags to go to the hospice.
So sorry for what you are going through. We went through a similar experience with my step dad earlier this year. Even the word 'hospice' had always scared me because of what you associate with such places, but I can't praise the one that looked after my step dad highly enough. It was so different from a hospital, very homely (not everyone agrees with this, but it even had a smokers room - for patients only). The nurses were fantastic and looked after my little boy, who is eight, marvellously so that he wasn't scared to visit his granddad. As my step dad didn't always feel like eating at meal times then they would make him snacks whenever he wanted it (toast at 2 o'clock in the morning on one occasion). They did have suggested visiting hours, but were very flexible with them and didn't turn anyone away that came out of hours. In all, having the hospice and it's staff available to us made a very difficult and sad time for all our family a bit more bearable and I will always be grateful for the warmth and understanding of the wonderful nurses. Best wishes to your dad, you and all your family.
He had cancer and spent a long time in the hospital prior to being moved to the Hospice where he died around 5 or so days later.
The hospital staff do a great job but they do not have the resources/experience to provide true palliative care. My Dad was almost relieved when he was transferred, although he knew what it meant.
The hospice staff are relaxed and kind, they are trained in providing care to those with serious illness. They want them to live their lives, and I stress life. I found that the hospice was full of life, for somewhere essentially full of death. They had a relaxed attitude, practically forcing my Dad to drink whiskey or whatever he fancied! haha! They would get you any drink you wanted! We told the staff that Dad particularly enjoyed watching Emmerdale (odd I know!!!) so they made sure that the television was on with it on, even though he wasn't really watching. If you said randomly you were a massive fan of say Harry Potter, they'd get the DVDs for you! Honestly they are so keen to let you live your life how you did before. They had a lady that came in to do painting or crafts with the patients and my Mum asked her to pop by my Dad, but sadly he was too ill to do any painting although he had been incredibly creative in his normal life. But she was relaxed and said to him that she'd pop by when he was more up to it, and that she'd perhaps show him some of her paintings. She never got to do that but I think he was pleased that someone was showing an interest.
The nursing staff were lovely to my Mum as well, and me when I had a bit of a meltdown because I was (I'm going to set myself off now!) sorry that my Dad couldn't give me away at my Wedding and that he wasn't a Grandad. But they were very good listeners and provided tissues at a moments notice. (He is a Grandad now, he's just never met my gorgeous little 1 year old niece).
The day Dad died, the hospice rang my Mum but couldn't get hold of her as she's deaf as a post haha! (thankfully in a way) so they rang my brother and he arranged the family. It must have been like 5am or something, my Dad was lapsed Catholic but the experienced nurse looked at Dad and said "hmm, we'll call Father xx" and they did the last rites for him about half an hour later. Then my brother called me about 7am and his girlfiend (now wife) came and collected me. I went in with Dad for 5 mins but he was very poorly so me, my sister, my brother and his girlfriend/wife all sat in the family room. I was starving because if I'm honest I'd been on the razz the night before (Dad would not have expected anything else!!) and the staff made me some toast! And they kept the tea flowing. Dad died about 2pm, and the nurse broke it to us very gently and the let us sit in the family room for as long as we wanted. Mum went in to see Dad, I didn't want to.
Anyway, after that they were very efficient but to be honest my Mum and my brother did the organising so a lot of that passed me by.
I would never fault the hospice, they were amazing. I raised £70 for them earlier in the year by selling the shoots from my plant to my colleagues. They sent me a lovely letter back thanking them for my fundraising efforts. In fact me and my colleagues fancy doing some more charity stuff to raise money for the hospice near where I work!
Anyway, hope all goes well for you and my thoughts are with you. xx
Edit - I just thought to add as I read a comment above about caring for the appearance, that my Dad had a bath while he was in there (I think he'd only had bed baths at the hospital) but he was a clean bloke, liked to have a shower a day so they gave him a real bath with this fancy equipment they had. He was going on about it for ages! Dead chuffed not only to have the wash, but that it was a REAL bath!
They want genuinely for people to feel it's a home from home. My mum smoked all her life, but eventually developed terminal lung cancer. One day while visiting her at the hospice, she looked particularly sad and it dawned on me, that the one thing she might fancy was a cigarette. She said she really missed them and wished she could, but would never dream of asking, because she assumed because of having lung cancer and sharing with others, she'd not be allowed.
So I decided to ask and was surprised to hear that yes, they didn't mind and even had a designated area for smokers. A cosy corner, well away from the main ward, with some chairs and they'd nicknamed it the Sin Bin.
Mum had been going down hill rapidly, but suddenly this perked her up as it gave her purpose, and a little routine. She enjoyed a little chat with her fellow smokers each day and when I next visited said she was even given a gin and tonic to go with it! I just wish I'd asked sooner.
A sad time, and tough for you Yorkie Gal, but your dad, like my mum might find a little respite and appreciate the chance of some social contact with others, if he chooses. I hope he warms to the idea as it'll also give you a little break.
I had no experience of a hospice prior to this, and thought they only dealt with cancer patients. My dad had pulmonary fibrosis, and was on 15 litres of oxygen 24 hours a day, and struggled to even sit up in bed, but nothing was too much trouble for them, from the doctors right down to the volunteers.
My dad told the nurses, he wasn't affraid of dying, he just didn't want to be gasping and struggling to get his breath and they said "we promise you that wont happen"........and it didn't!!
I only wish it had been open when my mum died in 1972 of cancer aged 37.