End of life, happening too quickly. Is this normal.

Duggies-girl

Registered User
Sep 6, 2017
1,787
So on Sunday I went away for a few days with my husband while my brother looked after dad. Dad was okay when we left but was experiencing a little discomfort after eating but nothing too bad.

We came home yesterday to find that dad had suffered worsening pain and the hospice are now involved. I am staying with dad again now and he has had morphine delivered this morning and the hospice team are going to deliver a comode this afternoon for him and he is going to be assessed for CHC tomorrow and probably will have 4 carers a day.

He was diagnosed with oesophageal cancer almost 2 years ago but he has done amazingly well. He has had 3 stents fitted so I knew this would be coming but it all seems too sudden. Four days ago he was relatively well and now everything seems out of control.

He is still happy in himself but not eating and he is making no effort to get out of bed to go to the toilet. I feel like it is snowballing and I can't get my head around it. I think it is the loss of control that is making me feel like this as up to now I have taken care of everything.

I feel like it has come out of nowhere and I am shocked to put it mildly. It's like, how the hell did this just happen. Dad is of course oblivious to it all. I don't know how I feel at the moment other than shocked.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,407
Dundee
I'm so sorry to read your news. No wonder you feel as you do, I can understand the feeling of loss of control.

Thinking of you and wishing you strength.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,232
65
Toronto, Canada
It sounds just like what happened with my mother. She was the same as always on my last visit, then I received a call a couple of days later saying she was running a fever. She stopped eating and taking fluids, although the first day or two I was able to get a little fluid in her. She died 9 days after the first call about her fever. They were not able to get it down.

My sister and I had already decided not to have Mum moved to hospital. She was wheelchair-bound and hadn't spoken for at least 3 years. She died in the nursing home she had been a resident in for over 13 years. It was very touching to see the various staff come to say goodbye.

Although it was a dreadful shock, I am grateful that I did not have to witness her going into the fetal position and essentially starving to death. I have heard stories about that and it seems to be the most awful thing to witness. My mother's death was relatively peaceful, for which I will always be thankful.

I understand the loss of control feeling but ultimately I think that is what happens. Events are beyond our control.

I'm so sorry for you and hope that all will be tranquil and serene.
 

CWR

Registered User
Mar 17, 2019
105
So on Sunday I went away for a few days with my husband while my brother looked after dad. Dad was okay when we left but was experiencing a little discomfort after eating but nothing too bad.

We came home yesterday to find that dad had suffered worsening pain and the hospice are now involved. I am staying with dad again now and he has had morphine delivered this morning and the hospice team are going to deliver a comode this afternoon for him and he is going to be assessed for CHC tomorrow and probably will have 4 carers a day.

He was diagnosed with oesophageal cancer almost 2 years ago but he has done amazingly well. He has had 3 stents fitted so I knew this would be coming but it all seems too sudden. Four days ago he was relatively well and now everything seems out of control.

He is still happy in himself but not eating and he is making no effort to get out of bed to go to the toilet. I feel like it is snowballing and I can't get my head around it. I think it is the loss of control that is making me feel like this as up to now I have taken care of everything.

I feel like it has come out of nowhere and I am shocked to put it mildly. It's like, how the hell did this just happen. Dad is of course oblivious to it all. I don't know how I feel at the moment other than shocked.
I can empathise with you totally.My mother , altho' her dementia was getting worse, was still going to daycare and clubs up to October 10th. On the 11th, she had developed a bad cold and had fallen out of bed, and suddenly this woman who had been mobile nad had had a good appetite, was immobile and hardly eating or drinking anything. It can be such a shock to the system. My mum was the same too insofar as she was happy enough in herself, singing and smiling, but it's still a shock. You have my deepest sympathy. That feeling of events being out of our control is the hardest thing to cope with. We develop stratagems for caring , then suddenly life whips them away, leaving us bereft. My only consolation was that my dear mother, after all that happened, had a peaceful death. I wish you the same for your father, whenever it happens. Big hugs.
 

Pete1

Registered User
Jul 16, 2019
469
So sorry to hear you news @Duggies-girl. The downturn can seem to happen extremely quickly, that was certainly my experience. Stay strong.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
Thank you all for your kind words I feel a bit better now. The hospice nurse came and explained a lot. Yes dad has had a downturn but it does not mean that he is dying right now or even next week. The morphine is just to keep him comfortable and it has worked. She was really nice and had a chat with dad who told her that he is fine.

Yes he will get a syringe driver but I am just to put it away in a safe place as it may never be needed. It is there as a 'just in case' back up. Dad's doctor is just being super efficient by providing it quickly. The comode is in the hall 'just in case'

Tomorrow a second nurse will asses dad for CHC and to put some kind of care package in if needed. I think that will be a good idea as I could do with some help and dad may get some kind of wash at long last.

I know the inevitable will happen at some point but I was just shocked at how quickly things had moved when it seems that I needn't be. It could be this week or it could be weeks away.

I really wish that he would just pass away in his sleep and that could happen but at the moment he is okay.
 

canary

Registered User
Feb 25, 2014
11,275
South coast
Oh, @Duggies-girl - I am so sorry to hear this.
It never comes in a timely, orderly way when we are ready.
Im glad you have got the "just in case" supplies
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,735
south-east London
I am sorry to hear about your dad's downturn. These things can happen very suddenly - and the feeling of having no control over things adds to our shock and distress.

I am glad that you have had a chance to speak to a hospice nurse since you first posted and that she has been able to explain things so that you have a clearer understanding of what is happening and feel more supported.

Thinking of you and wishing you all strength x.
 

Jessbow

Registered User
Mar 1, 2013
2,944
West Hertfordshire
You have done a brilliant job keeping him so well for so long.

You thought you were going to lose him I while a go I seem to recall, so he has done really well to get this far.

Lets hope the hospice nurses see that the end, whenever it maybe, is peaceful

if it gets too much, dont be afraid to ask for hospice in care
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
The 2nd hospice nurse came this morning. She is going to get a bed for dad to be delivered here next week, she is going to put the CHC form in today and she is optimistic that dad will get it (will wait and see and it is neither here or there as far as I am concerned) and hopefully dad should start getting 2 care visits a day very soon (top priority in my opinion)

Have taken dad to the bathroom twice now, he is very frail and wobbly and I am scared that he will fall but he still insists that he can take himself. He is getting very puffed out and I can see that he will have to use the comode very soon which is a shame as that is his biggest fear but needs must in the end. He is so terribly thin, his legs are pitiful to look at, like those of a concentration camp prisoner. The physical decline since a week ago is dreadful to see.

He goes to sleep, he wakes up and has some morphine then he goes back to sleep. It's awful to watch and every time he wakes up he insists on combing his hair. He is very ill but still worries about his appearance (typical dad)

I have come this far so I will try to see this through but practicalities may take over. It all depends on how long it goes on. Looking at him I would say that he would be lucky to last til next week but I know my dad and he will fight it all the way. I wish he wouldn't but he will.

Will just plod on for now
 

DesperateofDevon

Registered User
Jul 7, 2019
2,420
The 2nd hospice nurse came this morning. She is going to get a bed for dad to be delivered here next week, she is going to put the CHC form in today and she is optimistic that dad will get it (will wait and see and it is neither here or there as far as I am concerned) and hopefully dad should start getting 2 care visits a day very soon (top priority in my opinion)

Have taken dad to the bathroom twice now, he is very frail and wobbly and I am scared that he will fall but he still insists that he can take himself. He is getting very puffed out and I can see that he will have to use the comode very soon which is a shame as that is his biggest fear but needs must in the end. He is so terribly thin, his legs are pitiful to look at, like those of a concentration camp prisoner. The physical decline since a week ago is dreadful to see.

He goes to sleep, he wakes up and has some morphine then he goes back to sleep. It's awful to watch and every time he wakes up he insists on combing his hair. He is very ill but still worries about his appearance (typical dad)

I have come this far so I will try to see this through but practicalities may take over. It all depends on how long it goes on. Looking at him I would say that he would be lucky to last til next week but I know my dad and he will fight it all the way. I wish he wouldn't but he will.

Will just plod on for now
oh my lovely, it’s a very difficult time - please don’t ever forget how amazing you are. Take any help offered, would the district nurse not be calling in now to support & check in?

Also ask about someone coming in at night to sit occasionally so that you can you have a nights Rest & some sleep.

please look after yourself, you are going to need your strength over the next few weeks.

my precious cuddles with Dad are something I treasure. You need to be the daughter as well as carer, cook & bottlewasher - please take extra care of you.

I wish I could wave a magic wand & make this all over for you; all I can do is send my love & ((((((((((hugs))))))))))) & give you support via TP
Xxx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,337
Kent
There is often a sudden downturn @Duggies-girl following a relatively slow progression. It`s a shock for you I know.

I remember one of the carers coming back on duty after her weekend off. Her dismay was obvious when she saw my husband, there had been such a marked change for the worst over the weekend.

It`s painful for you I know. It may give you some comfort to know,at the moment, it is not painful for your dad.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,420
There is often a sudden downturn @Duggies-girl following a relatively slow progression. It`s a shock for you I know.

I remember one of the carers coming back on duty after her weekend off. Her dismay was obvious when she saw my husband, there had been such a marked change for the worst over the weekend.

It`s painful for you I know. It may give you some comfort to know,at the moment, it is not painful for your dad.
Sorry to jump on your thread at this difficult time @Duggies-girl , I just wanted to say how much your words @Grannie G have brought comfort to me with hindsight.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
Sorry to jump on your thread at this difficult time @Duggies-girl , I just wanted to say how much your words @Grannie G have brought comfort to me with hindsight.
Yes the words do bring comfort, dad has relatively little pain but the decline is continuing. I have just taken him to the bathroom on my own and he was so weak that I have decided that it will be the last time as it was dangerous and from now on he will use the comode that I can put by his bed, he agreed with me but of course he will forget that and try to argue next time. If he were to fall he would damage something and that is to awful to even think about so that is my decision and he will have to do what I say.

It may be the morphine that has caused this new weakness or it may just be a continuing decline. I don't know. We just had a relatively sensible conversation about it but I know he can't retain the information so we will probably repeat it later. He knows he is not well but thinks he will get better so I am not telling him different.