Dad visited by hospice. Is this routine??

Gg2

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Jul 19, 2014
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My dad is in a CH and has rapidly deteriorated over the last few weeks. He is hit and miss with fluids and refuses some food. He's in bed all the time and the Dr has stopped preventative medicine.

I've just called the home tonight and a carer said dad had been visited by a local hospice. I didn't know anything about this. She said they are going to get in touch with me. I'm now left worrying. I spoke to the dr about palliative care last week and she said she would contact me when she prescribes palliative drugs. She also said she didn't recommend he went into hospital so I don't think they plan to move him to the hospice.

No one can give me a time scale. I'm 7 months pregnant and so confused! Has anyone any experience of the hospice visiting?


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nitram

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Apr 6, 2011
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Bury
Sadly it looks as if your dad is approaching end of life, the palliative drugs which typically suppress pain, agitation, and nausea are usually administered by a sub cutaneous syringe driver.

If your dad is in a care home, as opposed to a nursing home, they will not be able to set this up, it has to be set up by either the district nurse or a nurse from the hospice. Unless there are complications I doubt if they will move him to the hospice.
 

Gg2

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Jul 19, 2014
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He is in a nursing home as opposed to a care home (sorry I put CH) and the dr said when the time came for palliative care she would prescribe the palliative injections.

I've just called the nursing home and spoken to the nurse. She said they said he doesn't need pain relief now but the woman from the hospice said to mention to the dr about keeping palliative drugs in the locked drugs cupboard for when he needs them. Whereas the dr had said to me she was going to put a note on the system for any out of hours Drs to prescribe them if needed.

I'm so upset.


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marsaday

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Mar 2, 2012
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Gg2,
Try not to be upset by this. I would see it as a good thing that the care home are planning ahead for him to have comfortable, pain free end. I don't think it matters whether it is the GP or the hospice nurse who sets this in motion. I have read that so many on here fight to get the correct palliative care. So often at the end of life they do not get the required level of pain relief. Try and be guided by them to know when the moment is right.

My Fil died in hospital and we would've loved to see him get hospice care in his care home right up to the end. I would be very relieved to know that my Mum's nursing home were as on-the-ball as your Dad's.
Take care.
 

nitram

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Apr 6, 2011
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Bury
I would try and arrange that the doctor prescribes the 'just in case' drugs and syringe driver so that they can be kept at the nursing home ready for use if required.

Actually getting controlled drugs and a syringe driver outside normal pharmacy hours can be difficult, think weekends and bank holidays.

Once they have been prescribed it's up to the nurses to decide when to use them, they can always refer to the GP or out of hours service if needs be.

Basically I seem to be agreeing with the woman from the hospice.
 

Sue J

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Dec 9, 2009
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Dear Gg2

I am so sorry. When I saw the thread re. hospice I didn't realise it was yours at first but my first thought was I am glad a dementia sufferer is getting proper palliative care. This is a very hard time for you. Are you able to speak to anyone from the hospice who has visited your Dad? they may be able to answer the questions you have and to put your mind at rest re. your Dad's care and help you come to terms with things.

Take care
Sue
 

Gg2

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Jul 19, 2014
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Thanks for all your replies.

I am really struggling to accept it. The home said they believe in a good death and the lady from the hospice is going to be in touch with me. She said they will offer me support and ensure my dad is comfortable when the time comes. She did say we're not at that stage just yet but the more I compare him to the middle of June on his birthday, the more I see where we are heading.

The timing is rubbish. 7 months pregnant and all this.

Thank you again. It's lovely to hear that my dads home seem to be on the ball. I'm so pleased with them. They are amazing and it is comforting to know that others think they are doing a good job. X


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Gg2

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Jul 19, 2014
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Do the palliative drugs speed the natural process up?? The dr said she was allowing dad to be open to natural causes by stopping preventative care.

What are palliative drugs?


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Gg2

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Jul 19, 2014
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To be honest, I'm worried that having the drugs on premises will mean things may start too early. Surely a dr should be the one who authorises go ahead, not a nurse. I understand what you are saying about out of hours and weekends but a dr on call would know more that a nurse wouldn't they or even a bank nurse?


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Jessbow

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Mar 1, 2013
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trust them to do what is right.

The Dr has already authorised the *go ahead*- the nurses don't deem it nessesary ...yet.
isn't that a good thing?

No one ever wants to get to this stage, and its the hardest thing ever, almost unbearable if you are 7 months pregnant.

My mother was deemed palliative in the January, and the 'just in case' meds were prescribed then. She didn't actually pass away until the June that year.

I guess what you are thinking ( I might be wrong) is you want your dad to meet your expected child- have you actually voiced that to anyone?

On one hand you are waiting for new life, on the other, watching life ebb away. very difficult days. trust the nurses to know what is best.

Thinking of you. xx
 

nitram

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Apr 6, 2011
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Bury
Palliative drugs are drugs used to lessen symptoms, they do not cure anything.
The drugs can be mixed in the required proportions in the syringe.
The basic symptoms treated are:.

Pain
Nausea and vomiting
Terminal restlessness and agitation
Moist secretions - difficult breathing

Drugs for treating the actual illness are often stopped usually because they are having little or exaggerated effect as the body is not absorbing them correctly.

They don't hasten death but do make the last days or hours more comfortable for the patient and also the relatives.

In my wife's case the drugs were in place for three months before use, my wife was blue lighted to A and E with acute kidney injury on a Friday, after several hours in resus she was put on amber care, on Sunday they wanted to discharge her as they had 2 wards closed with Norovirus, I refused unless they gave me the anticipatory pack and syringe which they then obtained from the dispensary. I was happy that they were in place for those 3 months which spanned Easter and a bank holiday.

Nurses will usually contact a doctor but they don't have to, in my wife's case the GP left notes about the initial drugs and strengths to be used in any serious deterioration. I was actually the one who asked for the drugs to be commenced when she started the death rattle on a Sunday before a bank holiday, she lasted another 4 days.

Having the palliative drugs readily available can prevent a lot of unnecessary distress, have a talk with the GP, nursing home, and hospice about when they would be used, the GP or home may have a policy conforming to the Gold Standards Framework.
 
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Gg2

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Jul 19, 2014
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Thank you so much for your replies.

I am coming around to the idea of him being comfortable.

I miss my lovely dad so much!


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Sue J

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Dec 9, 2009
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Thanks for all your replies.

I am really struggling to accept it. The home said they believe in a good death and the lady from the hospice is going to be in touch with me. She said they will offer me support and ensure my dad is comfortable when the time comes. She did say we're not at that stage just yet but the more I compare him to the middle of June on his birthday, the more I see where we are heading.

The timing is rubbish. 7 months pregnant and all this.

Thank you again. It's lovely to hear that my dads home seem to be on the ball. I'm so pleased with them. They are amazing and it is comforting to know that others think they are doing a good job. X


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It is encouraging to read that your Dad and you are getting such supportive care. It is such a lot for you to take in, understandbly especially given your pregnancy. Talk to your Dad about your expected little one, no one knows what anyone can take in even if they appear not to respond at all. it will help him, you and little one.

The Drs and nurses should be working closely together and sharing their decision making, which is what it seems is happening. Don't be afraid to talk to them about your worries because they are there for you.:)
 
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Quilty

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Aug 28, 2014
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GLASGOW
The hospice staff will be there to support you too. Its a terrible time but there is nobody who can tell you how long. They are planning in advance which is good. I hope you get to talk to the hospice team soon. Ask for a contact instead of fretting. Live quilty
 

Gg2

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Jul 19, 2014
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Thank you for asking about me Amy. I think I'm accepting the situation a little now. He was lashing out yesterday and today. That's not my dad.

The palliative nurse from the hospice rang me today and I am meeting her on Friday.

Thank you again x


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