Is this the end?

[claire43]

My dad was admitted to hospital last tuesday with a uti. His dementia is such that he refuses medication. He was so poorly they managed to get iv in and administered one dose of antibiotics and fluid however once awake he pulled iv out. We were told by a dr that they would continue to treat him for 48 hrs and if he hadnt rallied by then they would withdraw all treatment and let him die with dignity.

By the next day they had transferred him to a medical ward where they continued to try and treat him but he has ripped out at least 4 drips. Basically he hasnt eaten for 7 or 8 days, has had very little in the way of fluids and has not been able to be treated for the infection.

Everyday I see him I think its his last. He is skin and bone and when he is awake he doesnt make eye contact and seems to be unaware of us being there. He is so agitated, refuses to dress or keep bedclothes over him and is just asking for his mam and dad or talking rubbish. Its heartbreaking, I came from there this afternoon and burst into tears in the lift! The nurse says they are still trying to treat him but he wont let them. I just wish he'd stop fighting and be at peace. Does that sound bad? I cannot bear to see him struggle this way.

 

[TinaT]

It is truly horrid and very frightening to see someone you love in this state. My love to you at this dreadful time. My husband was in a similar state and was at the end of his life although the doctors and nurses couldn't predict this at the time.

Best wishes
TinaT

 

[fizzie]

This is so painful for you, I'm so sorry xxx

Remember that hearing is the last thing to go so do keep talking to him even though you think he might not be responding in a way that you feel is appropriate. The should be moistening his mouth regularly with a wet sponge to keep him comfortable.

Perhaps if someone sat with him while they gave him intravenous antibiotics they could stop him taking out the drip - hospitals do provide one to one in extreme cases with care support workers.

Thinking of you xxxxxxxxxxxxxxxxx

 

[fizzie]

Sorry just one other thought - should you/they decide to halt treatment do ask for the palliative care nurse to see him asap as that team will be able to reduce any suffering and will talk to you about what is happening to xx

 

[claire43]

It is truly horrid and very frightening to see someone you love in this state. My love to you at this dreadful time. My husband was in a similar state and was at the end of his life although the doctors and nurses couldn't predict this at the time.

Best wishes
TinaT

Thank you TinaT.

I am in despair. How can people be allowed to suffer like this. In my head Ive pleaded with God to take him, then got angry at him for allowing this to happen then tried bargaining with him!!! How foolish I am.

Apparently they have managed to get iv antibiotics in him a little while ago but he'll rip it out again at some point. Im left wondering why are they prolonging his agony.

 

[fizzie]

Claire perhaps you should have that conversation with the Doctor, sometimes they are frightened of not treating in case relatives come back at them. You know your dad best, talk to someone on the senior medical team, talk to them anyway and tell them what your feelings are, if you know what your Dad would want then tell them that too!
Thinking of you x

 

[claire43]

This is so painful for you, I'm so sorry xxx

Remember that hearing is the last thing to go so do keep talking to him even though you think he might not be responding in a way that you feel is appropriate. The should be moistening his mouth regularly with a wet sponge to keep him comfortable.

Perhaps if someone sat with him while they gave him intravenous antibiotics they could stop him taking out the drip - hospitals do provide one to one in extreme cases with care support workers.

Thinking of you xxxxxxxxxxxxxxxxx

Thank you fizzie.

He is having one to one but he gets so angry he rips them out. He has had a permanent catheter for several months and still tries to rip that out and has dislodged it several times.

 

[claire43]

Claire perhaps you should have that conversation with the Doctor, sometimes they are frightened of not treating in case relatives come back at them. You know your dad best, talk to someone on the senior medical team, talk to them anyway and tell them what your feelings are, if you know what your Dad would want then tell them that too!
Thinking of you x

I spoke to the staff nurse and explained everything that had happened and been said by the dr on the other ward ie withdrawing treatment after 48 hrs if no improvement. She said she'd ask the dr to speak to me but he was busy and so she said he'd speak to me tomorrow. However my mother managed to speak to him just as she was leaving and made it clear to him what the family and my dad would want. He agreed with my mother yet they are still trying to treat the infection.

 

[fizzie]

I spoke to the staff nurse and explained everything that had happened and been said by the dr on the other ward ie withdrawing treatment after 48 hrs if no improvement. She said she'd ask the dr to speak to me but he was busy and so she said he'd speak to me tomorrow. However my mother managed to speak to him just as she was leaving and made it clear to him what the family and my dad would want. He agreed with my mother yet they are still trying to treat the infection.

Oh I am so sorry, that is awful for all of youxxxxxx
I think someone needs to reinforce that in the morning and actually say to them 'you know our wishes and you know my Dad's wishes, please could you explain why you are continuing to treat in these circumstances'. it must be unbearable for you but you have to know that you have done your very, very best and try to get some sleep and talk to them again tomorrow.
Thinking of you xxxxxxxxxxxxx

 

[claire43]

Oh I am so sorry, that is awful for all of youxxxxxx
I think someone needs to reinforce that in the morning and actually say to them 'you know our wishes and you know my Dad's wishes, please could you explain why you are continuing to treat in these circumstances'. it must be unbearable for you but you have to know that you have done your very, very best and try to get some sleep and talk to them again tomorrow.
Thinking of you xxxxxxxxxxxxx

Thank you for your kindness. I can't believe I'm actually wanting treatment to stop so my loving dad passes away. What kind of person have I become.

 

[CeliaThePoet]

It's a completely understandable and reasonable way to feel. There is no quality of life here. I can't understand why they are not responding to your input. Can you skip chasing the doctor and keep asking for palliative care?

 

[claire43]

It's a completely understandable and reasonable way to feel. There is no quality of life here. I can't understand why they are not responding to your input. Can you skip chasing the doctor and keep asking for palliative care?

Thank you for your reply.

What criteria has to met for palliative care to be allowed. I will be going up tomorrow afternoon straight from work so hope to start things rolling.

 

[CeliaThePoet]

I'm sorry I don't know how it works there; I'm in the US. Here, you'd contact Hospice directly, of a hospital social worker could do it in your behalf. Often, they have help in place in a matter of hours.

 

[Shazedge]

I'm so sorry to hear of your pain and for your poor poor dad he must be so frightened and have no idea what is going on.
I would agree with everyone above in that you need to have that honest and definite conversation with his doctor about your dad.
It's heartbreaking I know, I've literally been in a very similar situation although my dad was sectioned and in a specialist MHU where he sadly passed away on Sunday. His consultant was marvellous and little more over a month ago he suggested immobilising him for his own safety and that of others. He kept falling and each fall accelerated the disease more. By that point his consultant felt he was so severely brain damaged it would be the best thing for him. The process began and to be honest took a while in terms of him being in a situation where he couldn't walk about. Then he became less mobile snd refused all food apart from ice cream. Last Tuesday he started to refuse all food and fluids and had deteriorated further, he was put into bed and by Sunday he had passed.
Myself, sisters and my mum went through similar feelings of wanting him to pass and be free from AD and feeling bad for doing so.
If you can speak to the dr about the palliative care team, they are amazing and will ensure your dad is totally comfortable and pain free. In the end it was a dignified death one which I thought I'd never see whilst he had this vile and cruel disease but it really was the best we could have hoped for.
Good luck and hope you get some answers for your dear dad, whichever way you look at it, it's heartbreaking but sadly as I've said many times, there really is no happy ending x
Sending much love and best wishes to you and your family x

 

[claire43]

Oh Shazedge Im so sorry you have been through this nightmare and so recently too. Its heartbreaking but in reality there is no escape until the end.

Finally got some answers today. Asked for a meeting with the consultant in charge of my dad. Luckily she came onto the ward purely by chance and we got to sit down with her in a private room. She was very kind and compassionate and asked what our expectations were. She listened to our concerns and seemed relieved by our wishes. In her opinion my dad is at the very least in the final stages of this dreadful illness. How long he has left she couldnt say but did say they were no longer going to try and to treat my dad and would just make him as comfortable as possible. They are going to keep him at the hospital until the christmas period is over which is a relief. When I pressed her on what would happen after this time she calmed me down and just said not to worry - it was as if she thought this wasnt going to be an issue.

Strangely enough my dad seemed a bit more with it today. He kept asking for an apple and it took us a while to realise he wanted a drink and bless him he drank a whole beaker of lemonade. After each sip he said mmm nice apple... He held my hand tightly and he even seemed to know it was me. Little things but I came away less distressed than yesterday.

 

[TinaT]

It is so heartbreaking when a small 'up' comes. False hope and even more distressing because you start to think you may be wrong in thinking of palliative care.

Thinking of you

xxTinaT

 

[fizzie]

Oh Shazedge Im so sorry you have been through this nightmare and so recently too. Its heartbreaking but in reality there is no escape until the end.

Finally got some answers today. Asked for a meeting with the consultant in charge of my dad. Luckily she came onto the ward purely by chance and we got to sit down with her in a private room. She was very kind and compassionate and asked what our expectations were. She listened to our concerns and seemed relieved by our wishes. In her opinion my dad is at the very least in the final stages of this dreadful illness. How long he has left she couldnt say but did say they were no longer going to try and to treat my dad and would just make him as comfortable as possible. They are going to keep him at the hospital until the christmas period is over which is a relief. When I pressed her on what would happen after this time she calmed me down and just said not to worry - it was as if she thought this wasnt going to be an issue.

Strangely enough my dad seemed a bit more with it today. He kept asking for an apple and it took us a while to realise he wanted a drink and bless him he drank a whole beaker of lemonade. After each sip he said mmm nice apple... He held my hand tightly and he even seemed to know it was me. Little things but I came away less distressed than yesterday.

That is wonderful that you managed to achieve so much today with the medics. Well done. Perhaps your Dad sensed everyone's relief - sometimes its the vibes that really count. I hope you can relax a little now that you feel everyone is pulling the same way. Will be thinking of you xxxx

 

[Ameliasmama]

We have so many painstaking similarities it's unbelievable Clare. My mum went to see my Dad today and for the first time in days he drank some fruit juice though he was convinced it was rum!

I hope your Dad is more comfortable soon and hugs to you too as I know it is t easy x


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[claire43]

Thank you everyone for your support. It means so much coming from others in similar circumstances - unfortunately you all understand the emotions family goes through.

Just come back from visiting my dad only to find another iv has been put in with fluids and antibiotics attached!!! When I went to the nurses desk to ask what the hell was going on I was told the night staff had done it because they were not aware of the latest decisions! Of course my dad woke up and started tugging on it. It was removed whilst we were there and I spoke to the registrar and he told me he was putting it on his records.

Once again I had to explain that when my dad asks for an apple he actually wants a drink. It seems to be too difficult to put this in his notes or pass it on to the next shift!

 

[fizzie]

oh Claire how awful for all of you, my heart goes out to you xx
Can you put a big notice over his bed about apple and drink?
Thinking of you xxxx