And so it begins.....

[Kikki21]

My mum is now on end of life care & the syringe driver is in place. She is sleeping most of the time. She still has occasional bouts of sickness/bile coming up but she has no energy to cough or spit & she doesn’t seem to have the energy to talk.

We live quite close to the hospital so after being there for almost 5 hrs this afternoon, I have come home for a rest. I’m pretty emotionally drained to be honest & need a few hours off & then we will go back in a bit unless we get a phone call earlier than that.

I’m glad that my cousin G was able to visit my mum today. After a 25 yr estrangement ( which my mum caused) my mum recognised her & tried to smile which was lovely to see but also heart breaking at the same time. I’m trying to keep it together & be strong.

My well off cousin & her family, true to form are being in my view, disrespectful to me but that’s by the by and I will save that for another time. Her daughter bringing up bloody chair heights at the care home at a time like this! Just unreal but that’s how their minds work, probably a criticism of me xx

 

[canary]

Oh Kikki, you are into the last long vigil now.

Your mum should be much less agitated now and more at peace. When you said on another thread that your mum was agitated I wondered whether she was in pain, so its good that they have started the syringe driver.

 

[joanne d]

Big hugs to you. I know the feeling. You don't need other people butting in at a time like this. Try to make the most of you time out and spoil yourself and let others spoil you. Xx

 

[Kikki21]

Oh Kikki, you are into the last long vigil now.

Your mum should be much less agitated now and more at peace. When you said on another thread that your mum was agitated I wondered whether she was in pain, so its good that they have started the syringe driver.

Ah @canary when you think you are prepared for it but actually it feels so awful. I’m not sure if my mum was in pain due to being constipated as they think that the reason for my mum being sick was the fact that she is constipated. Hopefully the syringe driver will be drying up the secretions now & so stop the sickness. We went back to the hospital & now are back home again. The nurses are under instructions to call me if there are any changes for the worst.... they say things all happen for a reason & we were meant to be away on holiday at this time & clearly we aren’t. My mum seems to be responding less & less now & I think she will probably slip into a coma soon. My dad did so. His passing was pretty sudden. Got a phone call in the morning to say to come in, they were not able to wake up so I came in with my mum & a few hrs passed & he was gone. Only the evening before he was still talking & joking.

 

[Kikki21]

Big hugs to you. I know the feeling. You don't need other people butting in at a time like this. Try to make the most of you time out and spoil yourself and let others spoil you. Xx

Thank you. I just find it incredibly insensitive of them to talk about chair heights in the care home. My mum is very short ( 4 11) so things are not built for her & the care home have done their best for her considering xx

 

[Rolypoly]

Sending big hugs your way. Xx

 

[Kikki21]

Sending big hugs your way. Xx

Thank you really appreciate the hugs xx

 

[Shedrech]

sending a blanket of sympathy to wrap yourself in tonight

 

[Kikki21]

sending a blanket of sympathy to wrap yourself in tonight

Thank you. If my mum had a side room at the hospital then both of us could have camped up there but she is still on the ward & there is no where to sleep there. The nurses know they can call me anytime. I don’t feel like watching TV so I have come upstairs & just trying to be peaceful & have some rest.

 

[jugglingmum]

Thinking of you.

 

[Kikki21]

Thinking of you.

Thank you. I feel totally drained. It’s probably the shock that everything has declined so quickly. Only a few days ago, my mum could still talk & communicate & now that is all stopping. She is very slow to rouse awake & I just feel she will slip away soon.
I sort of half thought that I would get a phone call last night. Now I am thinking it will come tonight.
I am walking around with my phone glued to my side & ensuring it is charged up.

 

[Kikki21]

It’s the morning & no phone call. My mum has not eaten for so long & yesterday I saw she had lost weight from her arms & her face & was very pale. I hope she is hanging on to see her close friend from Newark who is coming to see her this morning. I told her that she was coming several times yesterday. And then I hope she will let go.

 

[Bunpoots]

(((hugs))). I feel for you x

 

[Kikki21]

(((hugs))). I feel for you x

Thank you. I am praying that she will release soon. You keep thinking, she can’t go on much longer than this. Been in tears sat up in bed now just thinking about lots of stuff.
I would much rather remember my mum alive than like this & the expectation of being there at the end as well. I am glad I was there when my dad passed in some ways but in others I am
not. Even though it was very peaceful x

 

[Kikki21]

Rung the hospital & there is no change. She is sleeping & is peaceful. I rung the care home & told them that my mum is now on a syringe driver & is now end of life care. I am just getting ready to go to the hospital.
It is a year today that my mum went into the care home & it is a beautiful spring day but I feel very sad xx

 

[YorkshireLass]

Rung the hospital & there is no change. She is sleeping & is peaceful. I rung the care home & told them that my mum is now on a syringe driver & is now end of life care. I am just getting ready to go to the hospital.
It is a year today that my mum went into the care home & it is a beautiful spring day but I feel very sad xx

My thoughts are with you @Kikki21 Sending love and a big hug xxxx

 

[Kikki21]

More evidence that dementia is just the most awful illness ever. My mum is much more responsive today. Opening her eyes & talking plus having sips of tea & eating some yoghurt. Trying to talk as well to the family friends who came over today. Been in tears at her bedside feeding her like a child. Only i’m a bit of a rubbish nurse.
I know this kind of rally is normal but oh my god what a rollercoaster xx

 

[YorkshireLass]

More evidence that dementia is just the most awful illness ever. My mum is much more responsive today. Opening her eyes & talking plus having sips of tea & eating some yoghurt. Trying to talk as well to the family friends who came over today. Been in tears at her bedside feeding her like a child. Only i’m a bit of a rubbish nurse.
I know this kind of rally is normal but oh my god what a rollercoaster xx

No your not. This terrible disease is so challenging. When visiting I regularly sit beside mum and cry. This is the most distressing illness I have ever seen anyone suffer from and we have taken care of my mother and father in law with lung cancer, brain tumour and heart failure and doesn't even compare to the length and severity of suffering with dementia.

 

[Kikki21]

No your not. This terrible disease is so challenging. When visiting I regularly sit beside mum and cry. This is the most distressing illness I have ever seen anyone suffer from and we have taken care of my mother and father in law with lung cancer, brain tumour and heart failure and doesn't even compare to the length and severity of suffering with dementia.

Bless you it is the most utterly cruel illness I have witnessed. I can’t seem to hold it together today. I wish they would change the radio station. My mum is on the ward still. My mum is asleep now. I am watching her like I do my eldest cat to see if she is still breathing. My mum’s feet keep twitching. We don’t know if the food & drink she has had is going into her stomach or not or her lungs so difficult to know how much to give her xx

 

[YorkshireLass]

Bless you it is the most utterly cruel illness I have witnessed. I can’t seem to hold it together today. I wish they would change the radio station. My mum is on the ward still. My mum is asleep now. I am watching her like I do my eldest cat to see if she is still breathing. My mum’s feet keep twitching. We don’t know if the food & drink she has had is going into her stomach or not or her lungs so difficult to know how much to give her xx

I know just what you mean. When I visit mum and she is unresponsive I look closely to see if she is breathing and to be honest I hope at last she won't be. Terrible I know but there is only one end to this and when you are completely disconnected from life there is absolutely no quality to this existence. Hope all is calm for your mum and you xxx