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User
Posted 14 Sep 2019 at 08:00
Xxx
User
Posted 14 Sep 2019 at 08:12

DM

Pleased to hear things are calmer. Love and hugs.

Thanks Chris

User
Posted 14 Sep 2019 at 09:20

Hi DM, 

I'm pleased to hear John had a more peaceful night.  You both needed it.

Love to you both, 

Steve 

User
Posted 14 Sep 2019 at 15:15

Wishing you all Peace and sending Hugs

BFN

Julie XXX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Sep 2019 at 19:50

Wishing you peace at this very difficult time. Knowing things may not improve must be so heartbreaking.  I can only send you a mental hug and let you know you are both in my thoughts. What a cruel disease this can be.

User
Posted 14 Sep 2019 at 23:09

Thinking of you Allison. Wishing you and your family peace at this difficult time.

User
Posted 15 Sep 2019 at 11:28

I’m so lucky we have such wonderful carers, it’s been a horrible morning as John is hallucinating and his blood pressure is low, you can see the UTI is still present. The carers have called the triage nurse and she’s coming to give him some medazalam for the agitation. They managed to get him to drink, I couldn’t do it. He seems to respond to them much more than to me.

Meanwhile, the nurse has been and given him the sedative, such a relief as the hallucinations are so tough on us all. Swallowing is starting to be a problem, which we rather expect according to the end of life symptoms, but is distressing. We are the first in Swindon to receive an emergency care package, provided as a stop gap by our local CCG, it’s been a life saver for me. It fills the gap between the CCG tendering process for end if life emergency care and actually awarding a contract, it takes too long. I’m going for a rest now as I’ve been sleeping on the sofa to be nearby and it is comfortable, but not quite as good as your own bed. Lots of tears today, but always trying to find things to be grateful for, it does help.

love Allison xxx

User
Posted 15 Sep 2019 at 16:27

A further update, the agitation is so bad that he tried to get out of bed and it took four of us to hold is poorly, weak man back. The district nurse came quickly with a sedative but not before I got it full barrelled, I’m not used to my gentle man being aggressive, especially towards me, but I’m apparently an effing sneaky cow and can’t be trusted. He laughed at my tears, I feel broken apart. I have taken the decision that if things continue this was he will go into the hospice tomorrow (assuming there is a bed) as my ability to cope is pretty much at an end. At least in the Hospice he would be able to get meds right away and we wouldn’t have this distress. I’ve thought for a while that a move would be the end of him, but I can’t manage the situation any more. In fact, I don’t quite know how I’m going to get through the night as there is a single nurse on for a sizeable population and she would have to administer the drug, so we would have to wait until she is free. That could be hours. 

This is so hard.

allison 

User
Posted 15 Sep 2019 at 16:55
So sorry for you. I saw this a lot in the care home I worked at for a year. I know you are clever enough to not take it personally. Some extremely frail looking men can be immensely strong , and turning and toileting could become immensely challenging. Maybe it is time to let go to the hospice. It’s not giving in , it’s being kind to both of you at an awful time. Love and strength xx
User
Posted 15 Sep 2019 at 17:01

Oh Allison, I really feel so sad for you. You seemed to have coped amazingly well with it all so far but perhaps it is best for all of you now if John gets the care that he needs at the hospice. It must be so hard for you all but you also need to be kind to yourself. 

Thinking of you all. Xx

User
Posted 15 Sep 2019 at 17:10

I'm full of admiration for how you have coped so far and the way you have mostly cared for John by yourself.  You are not failing in any way if John now needs to go into a hospice.  By the sound of it, it would be the best for both of you.  I really do sympathise with you, having faced very similar with my dad.  Take care Allison x

User
Posted 15 Sep 2019 at 18:08

Allison

I saw similar behaviour from my mum in the last days of her life, as already said you are wise enough to know what is causing the outbursts. Perhaps it is time to let the hospice take some pressure off you. I don't think anyone could have done any more than you have done. 

Love and hugs to you both , Chris

User
Posted 15 Sep 2019 at 18:47

Allison, John's mind is totally mixed up with the infection and disease and is closing down as part of end of life. Neither he or you can control or influence this now. As others have said you are an absolute hero. I hope that when my end comes for what ever reason, I have someone like you by my side but I also hope they don't suffer for to long by looking after me and not getting more help. If hospice is available it might be best for both of you. Only you can decide now.
Like I and others have said you are an absolute hero.

Best wishes
Bill

Edited by member 15 Sep 2019 at 19:02  | Reason: Typo

User
Posted 15 Sep 2019 at 19:00
If the emergency package isn’t providing enough visits from the nurses, they may be able to increase it tomorrow. Setting up the syringe driver, was that sorted out?

You know that the gentle John you love and have shared your life with has no idea of these things that he is saying and doing. This is the meds, the infection and / or nature taking over; it is not him. If they can get the meds right, you can do this but if the support isn’t right, you have struggled enough.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Sep 2019 at 20:06
Sending big hugs xxxxxx
User
Posted 15 Sep 2019 at 21:56

If John is on a syringe driver could you ask that they add the Midazolam or another suitable sedative to it. If they get the dosage right it should stop his distress and negate the need for awaiting nurses at all hours to administer it. Hopefully then he will settle and can still stay with you.

In the meantime as hard as it may be you may need to consider removing yourself from the room as soon as he starts berating you due to his delerium/ confusion. It will only distress you to stay to listen to it. He will hopefully settle again after a short time.

As others have said though you need to take care of yourself now . 

Ann x

User
Posted 16 Sep 2019 at 09:30
I am hoping that John was more peaceful last night and that you had support quickly when you needed it x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Sep 2019 at 16:48
Sending xxxxhugsxxxx to you Allison, keep your strength up too.

Chris.

User
Posted 16 Sep 2019 at 19:39

Allison, my heart goes out to you and John at such a difficult time. You know it's not John acting like this, it's the cancer and the meds speaking. Take care of yourself.

thinking of you both.

Roy

User
Posted 17 Sep 2019 at 01:01
Alison, you are very much in my thoughts. I will never forget your kindness to me when my David was dying. You have been amazing for so long and I'm sure you told me how important it was to look after myself and so I am saying the same to you xx
 
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