Next Treatment Please

User

Posted 07 Sep 2019 at 07:17

Hi everyone

a few things have happened (I've mentioned on other threads but wanted to keep it here too). John is now very comfortable on a syringe driver at home, his brother arrived a couple of days ago from Sweden, I called him on advice from the district nurse at 11pm his time and he arrived in the UK at 9.30 am. I don’t want him to miss time with his only brother as he missed his mum by a day and that hurt for years. Since then we have had lovely night sitters to allow me to have some rest, they aren’t in the least intrusive and I’m deeply grateful for their help. I did have a right old chase around yesterday to get some morphine ampoules as our pharmacy (usually excellent) were not good and my phone conversation went like this “the district nurses ask me to check if the morphine will be delivered before two so they can update the syringe driver, my husband is at end of life and needs this” “we only for the script yesterday” “ok, but this is urgent and he’s at end of life” “we only got the script yesterday and it won’t be in until four” “right, what have you got available and can I collect as I need two ampoules for the driver, we have four here” “you can collect the morphine but not the cyclosine” “ok, I’m on my way” phone put down. No, sorry to hear that, we will do our best, nothing. I popped into the GP surgery and mentioned it to them and they swing into action, taken into a room, cuddled, tissues, sit there, we will sort it all out, don’t worry, and they did. I did have to go to another pharmacy rather then the attached one, but two hours later I had enough supplies to last a few days. So far, that is my only encounter with a faceless, unkind person, I think they need an empathy transplant!

John was asleep most of the day yesterday but ok and managed to eat something in the latter part of the day, he’s out of pain at long last and comfortable. I wish for nothing but peace now.

with love Devonmaid (for those that don’t know I’m also Allison) xxxx

User

Posted 07 Sep 2019 at 08:11

So glad John out of pain now ,thinking of you all,Geoff

User

Posted 07 Sep 2019 at 08:28

So pleased to hear things have settled down a little. Lots of hugs to you all.

Thanks Chris.

User

Posted 07 Sep 2019 at 12:05

Dear Allison so pleased John is now more comfortable and with his brother

Love Tom xxx 😍

User

Posted 11 Sep 2019 at 07:11

Time for an update. Yesterday was a horrendous day, John has an infection and is extremely confused and agitated. The hospice had sent lorazepam for him but it didn’t seem to work well so I called the GP, one of the team called me back and said to leave things until today when our own GP is coming out. I phoned the hospice after that as it has been so bad and she didn’t seem to get how bad things are for him, pulling at his catheter and syringe pump, thinking he is at war, there are flies everywhere and peacocks, lots of weird hallucinations too, including one where he was talking to someone next to him and shaking a dice. I nearly broke apart, it’s been so awful. The district nurses said they’d send someone at 5pm to give him some medazapam by injection, at nine or they rang to say they weren’t coming. Thanks. Luckily for all of us he had finally fallen into a deep sleep. I had a sitter last night, which was great as I was on my knees with exhaustion, he was awake all night and calling for me but she was able to settle him thankfully, they are good at their jobs. Right now, the syringe driver has tissued again so I don’t know if he’s getting any pain relief but he’s fallen back to sleep so I’m just waiting for a nurse again. It is our daughter’s birthday today so I’m hoping he gets through today, but then I am happy to let him go, for his sake. The confusion is so awful, no one knows what’s causing it, infection, constipation, Brain mets or all three. Sometimes it’s chemicals from end of life. My poor darling man, I love him so much.

Devonmaid xxxx

User

Posted 11 Sep 2019 at 07:32

Dear Devonmaid ,my heart breaks for you and your family .

No words can ever be enough but just to let you know I’m thinking of you all .

Best wishes

Debby xx

User

Posted 11 Sep 2019 at 07:41

We are thinking about you Allison ,try and take care of yourself, Geoff. Just wish these smart a##s people who say prostate cancer is one of the best ones to get could read your post !

User

Posted 11 Sep 2019 at 07:52

Allison

What a post. . I’m crying my eyes out thinking of you all.

Love

User

Posted 11 Sep 2019 at 10:36

So much love and respect xx

User

Posted 11 Sep 2019 at 13:09

Dear Allison,

I so, so understand what you are going through. And I so wish I could give you some helpful advice, but I can't. But please know that you and John and the girls are in my thoughts, and I send my love and wishes for peace for you all.

User

Posted 11 Sep 2019 at 14:35

Dear Devonmaid,

You post is heartbreaking. You have my utmost respect, for writing this.I hope it has helped you in some way, and also may help others along the end of life path.

My thoughts are with you and your family. Love to you all.

Leila xx

User

Posted 11 Sep 2019 at 15:54

Thinking of you all

Bri xx

User

Posted 11 Sep 2019 at 17:48

Like others have said Alison my love goes out to all of you , it reminds me so much of Trevor’s last few days .

i Remember how hard it was and how utterly exhausting watching but unable to do anything like John Trevor’s agitation and confusion was awful and the deepest part of me was willing him to let go but also not wanting that finale moment .

i am thinking of you all xxx

BFN

Julie xxx

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Sep 2019 at 18:16

Xxxxxxxxxxxxxxxxxxxx

User

Posted 11 Sep 2019 at 21:11

If I could reach over and hold your hand, I would. My heart is broken for you already - and for Ness as I think Si is also very, very poorly now. What warriors both of you (and your men) have been for so long x

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

User

Posted 12 Sep 2019 at 19:59

Thank you for sharing what is happening, I am so sorry that you both are where you are, thinking of you and wishing what is best for you both now.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 14 Sep 2019 at 06:28

Things have quietened down now, John is less responsive and sleeping nearly all the time, it’s much better than the extreme agitation. Last night was spent with hiccups but I had a brainwave this morning and gave him some lorazepam and it’s stopped it so he can rest again now. I’m grateful for the carers coming in, it’s nice to see him washed and clean, much better than I managed it and safer for him. They always ask him if he wants to get out of bed but he never does. It was my birthday (and our little granddaughter’s) yesterday, so he got past the family birthdays thank goodness, no one wanted to have the sadness of him leaving us in those days, least of all John. He can barely speak now, reading up on the signs of dying, he is close now but much more settled and peaceful. I ask for nothing more.

with love Allison xxx

User

Posted 14 Sep 2019 at 07:14

Thinking of you, glad John is settled and as comfortable as he can be.

User

Posted 14 Sep 2019 at 07:17

Hello Devonmaid

So glad John is more peaceful now and that He got through yours and your Granddaughter's birthday.

Thinking of you all

Barbara xxxx

User

Posted 14 Sep 2019 at 07:59

So sorry to hear about the stage John is at now but good that he is more at peace. Just before my mum passed the worst thing for us was mum's extreme agitation. I asked the GP if he would consider increasing her midazolam ( she was on syringe driver by that stage) but he refused although the nurse agreed with me. Thankfully over the next 2-3 days she lapsed into a more settled and peaceful state although we could no longer have any conversations with her.

John will of course still hear you some of the time and all you can do is hold his hand and tell him how much you love him which I'm sure you are all doing anyway.

Just wishing you all peace over the coming days.

Ann x

User

Posted 14 Sep 2019 at 08:00

Xxx

User

Posted 14 Sep 2019 at 08:12

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

User

Posted 17 Sep 2019 at 12:09

Just to say I am thinking of you all and understand your dilemma . If you feel the hospice is the right thing then don’t feel bad Allison we can all only make a decision when we are faced with it . John is not in the position to make that decision for himself but I suspect if he was he would want to make things as easy as possible on those he loves .

BFN

Julie XXX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Sep 2019 at 18:33

Hi everyone

Well he didn’t go to the hospice, the ambulance came and between us we decided that there was a drastic risk that he wouldn’t make it and would die in the ambulance. So we are still at home, dreadful times at the moment, he has reached the awful rattle stage and with hiccups adding to the distressing sounds and actual discomfort, things are pretty dreadful. The nurses thought that he would pass away last night due to his breathing pattern but he didn’t. I don’t think I had any idea of how disturbing the rattle would be, he hasn’t eaten for nearly a week now or drunk anything for a few days (no particular problem, it hasn’t been possible and swallowing reflex is gone, hence the rattle).

The thing I have learnt about being at home is this, you cannot rely on the local staff to come when you need them, not their fault, the district nurses are over stretched. The Carers here have been fantastic but as much as we wanted John to be at home the nursing would have been more responsive in the hospice. I did not realise that the syringe driver would always be 24 hours behind the drug curve. The doses are upped every 24 hours to account for the stat doses, which means that you always have a background of drugs in your system (good) but it’s never enough and we have to call the nurses out roughly four times a day. And we wait and wait in an increasingly distraught state for the nurses to come. Everyone involved does their utmost, but it’s not enough for this aspect of it all. On the other hand, being at home means that we can be here all the time and have access to our things and John is in familiar surroundings, even if he is not aware any more.

I really want to say that we are ready for our wonderful man to leave us but I’m not entirely sure that John is quite ready to go. We have told him it is ok to go, that was not nice and the girls were breaking their hearts, I know he can hear us but despite having the majority of the signs of departing, he is still here.

love Allison xxxx

User

Posted 18 Sep 2019 at 19:00

I can imagine just how distressing this is for you Alison having seen it first hand in the care home I worked in. Simply awful and my heart goes out to you all. I get that it’s good to be in your own home , but at the same time you are cut off from care , meds and a bit of a breather once in a while. Sending love and strength as ever and thinking of you.

User

Posted 18 Sep 2019 at 19:12

I am so sorry, that was never my experience of caring for someone at home; the district nurses and / or GP came regularly through the day, the drugs were there and were increased when needed. The postcode lottery strikes again.

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

User

Posted 18 Sep 2019 at 19:36

Dear Allison,

Sending you the biggest, warmest hug ever.

I only wish I could do it in person.

It's been a while since I was last with you and John, and all the memories of our meetings are such happy ones, so knowing how terrible things are now has me choking back the tears.

You're both in our thoughts and prayers, we can't possibly understand what you're both going through now, and we can only imagine your pain.

All our love to you both,

George and Lynn

B2PCa

User

Posted 18 Sep 2019 at 20:50

Allison

Thinking of you both.

Thanks Chris

User

Posted 18 Sep 2019 at 21:07

Allison, my heart goes out to you. Care in the community should be better than this.

User

Posted 18 Sep 2019 at 21:42

I am so sad for you. I wish you and your family peace and comfort and for your dear husband to be free of distress. Thinking of you all.

User

Posted 18 Sep 2019 at 22:40

Oh Allison , my heart is breaking for you and your family it’s like a continuing nightmare and I can feel how stressed and terrified you are .

in the last 48hrs with Trevor I just wanted him to let go but like John he fought until his last breath . Looking back and with what you are going through I am glad he was in the hospital although I would have preferred a hospice .

i can truly imagine how much stress you are under with inadequate care ( not there fault ) because of under staffing but it all makes such a horrendous time even worse for you all .

please know I am thinking of you all and wish only that the next phase is as peaceful as possible.

BFN

Julie XXX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 19 Sep 2019 at 09:49

We passed a quiet night and John is peaceful at last, his breathing is shallow but regular and he is warm. It is a more comfortable situation for all of us. The end cannot be far away but his strength is legendary.

love to you all and thank you for the kindness, I can't tell you how much it means, though I know how hard it is to write anything.

Allison xxx

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