Reality bites-this is not how I thought it would be

tre

Registered User
Sep 23, 2008
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Herts
Just given him the first dose of antibiotic after slight muddle re pharmacy delivering. Hopefully this might help with his cough.
Tre
 

nita

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Dec 30, 2011
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Essex
Just caught up with your thread, tre. If it's any consolation, Mum went about a week without a bowel movement and the district nurse came and administered an enema.
I had a problem with her constipation and in the end found I had to give a sachet of Movicol every day. I think I gave her this from the day after the enema. Have you been advised to restart laxatives? We have had contact with Hospice at Home and this has continued for a year. She has had various "blips" but rallied each time. She has been very ill at times with infections, becoming unresponsive. I do hope your husband will rally too. Thinking of you and hope you get the carers as soon as possible.
 

tre

Registered User
Sep 23, 2008
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Herts
The evening nurse called in the District Nurse who arrived 15mins later. David's breathing is very rattly. She gave pain relief plus something to help the secretions. She will return tomorrow morning to set up a syringe driver for morphine. It seems there is no way back from here but I feel really supported by the integrated healthcare team. I have David home and everything is being done to keep him pain free. To look after him here is the last gift I can give to the man I love.
Tre
 

bemused1

Registered User
Mar 4, 2012
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Tre I am so glad that support is there for you, this is how it should be. It's been a very rapid progression but better that way.
I wish you peace and strength for as long as it is needed , David will be proud of you and the love you have for him shines out.
 

Amy in the US

Registered User
Feb 28, 2015
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USA
Tre, I hope you are getting the support you need for you as well as for David and that they are able to manage his pain. I know it's not likely, but hope you are able to get some rest tonight.

We are thinking of you. Update us when you can, and we understand if you cannot.
 

CeliaThePoet

Registered User
Dec 7, 2013
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Buffalo, NY, USA
I'm sorry this is happening, but I'm glad to know what's going on and I'm sending you both peaceful thoughts. It's so good you're with him and that he's at home. I hope your night is as peaceful as it can be. My thoughts are with you, tre.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
Oh Tre how heartbreaking for you. I'm glad David is at home with you and that you feel well supported. Wishing your David peace and you strength.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
I hope you continue to have the strength to do what you really want to do tre. You know you could do no more.
 

tre

Registered User
Sep 23, 2008
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Herts
David was very hot yesterday at around 7.30pm. I gave him paracetamol and sponged him with a cold flannel but he was still quite hot when the evening nurse came. She said she would contact the District Nurse who would come tomorrow and probably fit a syringe driver. The District Nurse turned up yesterday evening only about half an hour later. She would have given him meds by injection but the Just in Case pack sent by the pharmacy had the two most important meds, including the diamorphine missing. She was not best pleased. She gave him something from the pack to control his secretions as his breathing was very rattily and an under the tongue tablet which should help him sleep. She told me she would be back in the morning with the meds and if I was worried to call the night service but I must tell them the pack was incomplete and they would need to get the meds via the 111 doctor.
I went to bed around midnight and David was OK but woke around 2.00am as his rattle was back and he was coughing. He was also really hot. I sponged him again and reassured him. I did not dare try more paracetamol in case he choked. After about an hour I called the night service as he was becoming agitated, pulling up his legs and gripping at the covers. 111 doctor phoned and I had to go through what was in the pack. Then she said that because an incomplete pack was prescribed a doctor did not need to see David but she would send the night team to Welwyn to get the drugs and then on to me. They arrived about 6.00am and gave David an injection including diamorphine.
The District Nurse came around 9.30am and said to tell David's family if they want to visit to come today rather than tomorrow. She will come back later to re-assess and probably arrange the syringe driver. Isabel Hospice are coming and will try to arrange a night sitter for me tonight.
I am numb. Last Friday afternoon David was dancing to Christmas tunes at his day care.
I am glad that he has pain relief and in calm now. He still responds if I talk to him and moisten his mouth.
Tre
 

sleepless

Registered User
Feb 19, 2010
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The Sweet North
Tre, I am not surprised that you feel numbed by all this, it is so sudden.
But you are doing a marvellous job, and David is responsive to you and knows you are there.
Thinking of you both. xx
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
Your feelings are so understandable tre - a dreadful shock that things can happen so quickly. We're all thinking of the two of you.