A new stage in my life...................

[Grannie G]

The single rooms all have Windows both to the garden and the corridor , with curtains if safety allows them.

Helen was awake when we arrived and apologised in advance of being snappy. She was very uncomfortable, from constipation and along her spine. Amyloid in the bone? Nerve damage? No one seems able to say.

Linda came with a fixed smile on her face, trying so hard. She asked about the nurse and agreed she would like to talk to him again. He came straight away and they had the same conversation.

Nurses came to try to make Helen more comfortable but it wasn't successful. I did say she was offered Meds to make her sleep and could she have them .

Linda covered her face with her hands. It was all too much. Her carer said she was upset at home and staff were trying as much as possible to support her.

Linda left as the nurse came with the sleeping Meds. Helen is sleeping now. Martin has gone and I'm here to monitor Helens sleeping and comfort.

 

[Chemmy]

I can remember when Neighbours and Home and Away started in the 90s, how surprised I was to see them all in single rooms in the local hospital. My parents much preferred a ward with other people around, but I'd opt for one to myself.

I understand the concern about there being problems when dealing with patients with dementia in their own rooms, but the other side of the coin is that disruptive dementia behaviour can also distress other poorly people if they're in the same ward, and that doesn't seem fair either.

 

[Pollyanna]

Hello Sylvia

How lovely that Linda is trying so hard. Perhaps her reactions are the same as any adult, but Linda isn't able to hide them so well. I'm sure at times everyone would like to hide behind their hands at such a difficult situation, but society and and our experience as adults has taught us not to. I thought the same when Helen mentioned that she keeps asking her not to die and get better. Isn't that what we really want to say too, but we know its not right?

It good to hear that the medication is helping Helen to sleep and for that time she is getting the peace that she deserves. I hope she is more comfortable when she wakes.

I am sure there are excellent hospices proving wonderful care, but the experience you are sharing is not what I would expect either. I agree with everyone about contacting the trustees and I hope that you get a positive response.

Wishing you all well.

x

 

[Grannie G]

Thank you Pollyanna .

The doctor came at 11.30 and Helen woke to her voice.

She said she was comfortable but her feet were cold. I'd had to take one cover off because Helen said it was too heavy on her feet so I asked if there was a cellular blanket she could have. One has been brought and is much lighter.

The doctor asked if the additional med was helping her sleep. It is. We were told she can have this as often as she likes but the request must come from Helen, it cannot be offered.

I understand the implications of this but it does mean someone should be with Helen at all times.

 

[sue38]

I'm guessing that the vomiting will have left Helen dehydrated and may have caused the constipation, which in turn may be exacerbating pain in her spine. Poor Helen.

Is Helen aware of the other patients in the room, and the comings and goings associated with them? As all she wants to do is sleep, and this is preventing her, then I think you are fully justified in pushing for a single room. Plus her last sight might not be of a dispenser!

Thinking of you all. I'm at work and have work stuff on one screen and this thread on the other.

 

[Sue J]

The doctor asked if the additional med was helping her sleep. It is. We were told she can have this as often as she likes but the request must come from Helen, it cannot be offered.

I understand the implications of this but it does mean someone should be with Helen at all times.

Dear Sylvia,

Continuing to think of you all with everyone else and hope that Helen's pain and nausea are able to brought under control.

It is such a blessing that you are there and understand things so well. Personally can't understand why the additional med can't be offered, Helen must have little concept of time and also be struggling to express things at times, I would imagine, so how do they know if this is the case if they don't ask her? She obviously is aware enough to recognize and wake to the Dr's voice knowing that they are the ones that are able to prescribe her any relief. Of course she is vulnerable but decisions are not made by one person but by a professional team with experience in this specialized field of care. Of course there are and must be protocols for safety and protection of everyone but sometimes they are just red tape.

I hope that Helen continues to be able to sleep which I'm sure she can do much more readily knowing you are by her side.
Love to allxxx

 

[Izzy]

Poor Linda. My heart goes out to her.


Sent from my iPhone using Talking Point

 

[Loopiloo]

I have just read the recent posts and agree with all the comments concerning the lack of privacy for people who are dying in this hospice. Like many I also thought single rooms were the norm for hospices and that privacy and dignity were a main priority along with good end of life care.

Helen sounds to be receiving the latter to the best ability of the doctors, her kidney failure being a major factor in some of the problems she is encountering. Thanks for explaining this Sylvia as I did wonder if this was the case.

I can appreciate the hospice’s problems concerning the accommodation, but I’m still shocked.

All you can do is hope that Helen may be able to move to the single room at some future time. Sadly it means the death of the present occupant, but…….

This is how it is when waiting for a care/nursing home vacancy, they only become available when a resident dies. Sad.

Interesting that you and Martin will have a good look today. There could be an admin room under used which could be used for patients for the same reasons the present single rooms are used. Those very close to death who do need and deserve as much privacy and dignity possible, and their families.

Hoping Helen will have as good a day as possible in all respects. Peace of body and mind. Hoping…. she so much needs painfree peace…

I’m writing this offline and it is taking me so long, I will catch up later with more recent posts.

Much love
Loo xxx

 

[CollegeGirl]

How distressing for all concerned that someone passed away in the next cubicle. I'm so sorry Sylvia.

My mother in law died in a cubicle in hospital, surrounded by other patients and visitors, and it was awful for everyone. One of the nurses was very distressed that this had happened and quickly arranged for my MiL to be moved to a private room so that we could all spend time with her, and we were then given as much time as we needed.

Like most people, I assumed hospices were more private. Thank goodness Helen didn't really understand what was going on - she may have been frightened if she had.

I hope the other family can come to terms with the lack of privacy for their loved one at this time, too.

Sending love to you all xx

 

[jugglingmum]

Sylvia - you are being a wonderfully supportive friend.

When I saw your photo of the dispenser's I thought it looked like a 'bay' with more than one bed in. As others have said, not what you would hope for in a hospice, and certainly not what I would have assumed. At the very least you would have expected the deceased patient to be moved to a private room for the family and the service, out of respect to both the deceased and the other patients.

I am so sorry that you and Helen and her family are distressed by this experience.

 

[Soobee]

Helen's experiences have opened my eyes to the lack of funding for palliative care. I have joined the facebook page of my local hospice and am sad to say they are so underfunded they will have to cut services at the end of this year.

We will all need to raise awareness of this situation in order to get suitable care for those at the end of their lives. Hospices are mainly funded by donations rather than by the NHS. How can this be acceptable?

I am sure the hospice is doing everything it can do, with what's available.

 

[Grannie G]

Thank you Sue.

One patient died, one has gone home till Thursday and one is going home tomorrow. So far none of the beds have been filled.

The lady who's going home tomorrow had visitors, a couple and a little girl. They were noisy . Not excessively enough for me to ask them to hush, just normal voices excited their mother was being allowed home.
Helen woke and asked what the shouting and banging was.

They have gone now and she is sleeping again with no need of additional Meds.

 

[Saffie]

Despite lack of funding, surely it is when a hospice is built that the decision regarding individual rooms is addressed. I am really shocked that they are not the norm.
Regarding single rooms in a general hospital, I do think there is a need for both single and multiple bed wards.
My husband was in a 6- 8 bed room of a ward and right near the nurses' station. The first time he sat in a chair after his amputation apparantly staff thought he had fallen asleep when in fact he had stopped breathing. They only realised their mistake when they went to try to wake him for lunch. After a panic during which I was sent for, he was able to be resuscitated but what would have happened if he and been in a single room and had to wait for someone to actually go into the room, especially if everyone else was in a single room too.

In the very new community health hospital he went to later, all the rooms were single but there were many more nursing assistants there and few patients.

I hope that Helen finds peace and quiet Sylvia. x

 

[ellejay]

We will all need to raise awareness of this situation in order to get suitable care for those at the end of their lives. Hospices are mainly funded by donations rather than by the NHS. How can this be acceptable?

Hospice & Air Ambulance too, scandalous !

I hope Helen can get a peaceful place to be, it's not much to ask is it?

Lin x

 

[Tattoo Lane]

Thinking of you all and sending my love, sending light,peace and support to you as the watchers, Helen is so lucky to have you all there fighting for her. Some people have no one to fight their corner. Please keep telling her she is in our hearts and our thoughts xxxxxxxx

 

[cragmaid]

It is so sad that in this day and age, funding for hospices is primarily down to donations. My daughter ran in the Great North Run, raising money for Macmillan nurses. So many others raised many thousands of pounds for all sorts of charities. All good causes I'm sure....but they all need extra funding....just to perform day to day tasks.

 

[Spamar]

It's interesting, you know. Most of us have lost loved ones, yet no one seems to have any idea of the state of hospices! I certainly didn't. Like most, I thought single rooms for all. I know it needs more staffing, but.....someone is at the end of life.
I've found this very thought provoking.

Meanwhile, let's hope Helen finds some peace, and sleeps.

That's another thing. Someone at the end of life has to ask for painkillers? Are our nurses one so lacking in skills that they can't tell when someone is in pain. Plus many cant vocalise at end stages.

That you Sylvia, once again for these updates. As well as telling us about Helen you are opening our eyes!

 

[sleepless]

Hospice & Air Ambulance too, scandalous !

I hope Helen can get a peaceful place to be, it's not much to ask is it?

Lin x

I was present at a talk given by someone from our local Air Ambulance, and the audience were very vocal about how the government or NHS should run these services (currently funded by donations.)
We were all taken by surprise when he vehemently opposed any such thing, saying that the service would suffer if centrally funded.

In an ideal world, hospices would have sufficient funds to give everyone exactly what they wish at end of life (and there would be much variation of course) but the reality is that they rely heavily on fundraising, so do we want them to provide the best for the few or spread the help further? There are many family and home situations which fall far short of a good end of life experience, and hospices are a godsend in these circumstances.
One wonders what sort of service would be available if hospices were fully funded by the NHS.
For now, all we can do is support the hard working fundraisers who strive to keep up with demand for places and services in our local hospices.

 

[Saffie]

That's another thing. Someone at the end of life has to ask for painkillers? Are our nurses one so lacking in skills that they can't tell when someone is in pain. Plus many cant vocalise at end stages.

That you Sylvia, once again for these updates. As well as telling us about Helen you are opening our eyes!

I think that you can maybe blame Dr Shipman and the fear of litigation for that.

 

[Grannie G]

This is the situation as I understand it.

When palliative care was decided on, a closed box was brought to the house containing all anticipatory drugs deemed necessary. The drugs were listed at the head of a three page card with all Helen`s confidential medical history.

This was taken to the hospice with her.

All drugs given are entered into the palliative care record card and as new drugs are prescribed each dose is recorded meticulously.

I do not know why the doctors cannot suggest Helen takes this drug to let her sleep but insist she asks for it. All I know is they said it will not shorten her life but give her space and short term relief.

I imagine if there was any medical negligence attributed to any establishment, the drug use records for all patients would be examined , even the patients who came to no harm.

I do not know this , its just my theory.