God wants me over there...

[panda57]

Hi
Mum now been out of hospital for 10 days. Staying in bed and increasingly confused.
Much of what she said today didnt make any kind of sense. She has her eyes closed when she tries to tell me something and tries to find the right words,I dont know if she is explaining a dream or it is purely confusion.
I went into her room around lunchtime,a western was on the TV she was trying to tell me something... want to be over there...gesturing to opposite wall as if there was a row of things/people.
Who wants to be over there?
God wants me over there....
I didnt know how to respond except I did think is she seeing her future......She is not religous.
Conversely she ate more today than in the last 3 weeks,2 bananas,macaroon, biscuit and a few cups of tea.I also got her to have wash
Also is hardly going to WC in comparison to her normal pattern.Is this the end stage?Am grateful I had a discussion with GP re needing support through this time.Its scary when its just me with her over the weekend.
P x

 

[FifiMo]

Hiya Panda,

I really feel for you, having not long ago having gone through this with my mum. The truthful answer to your question is that you can't be positive that this is the end stage and that is the difficulty I think.

If you would like some comparisons with when my mum was dying, then she did the same as your mum with regards to the mumbline and having her eyes closed. My mother was also reaching out for something and there were varying views about what the reaching out meant. The care home staff said that we should just hold her hand and that she was reaching out for reassurance that someone was there. We, on the other hand, finally got her to tell us what she was reaching out for and she said she was getting the children to come and sit close to her. What did help the reaching out was a cuddly toy that she had. She seemed to get comfort from being able to hold it. All this being done with her eyes closed.

The first thing that my sisters and I noticed that we thought was quite telling was her eyes. When she did open them they had turned opaque. This caused us to wonder whether she couldn't see and that was why she was reaching out. Then one day she saw me drinking out of a bottle of pepsi and quickly reached out and took it off me! So that answered that question. The other thing that made us consider that she was in an end of life situation was when the SALT rather honestly pointed out that even if she is eating a spoon of this and a sip of that, that it was not commensurate with sustaining life. She told us that a few spoonfuls might help her last a few extra hours but that in her mind there was only one outcome. This was then confirmed by her GP when he visited the home.

Her doctor told us that she could go at any time but would be a miracle if she was still around a month from then. We sat at her bedside for two weeks and she did seem to rally a little bit and the care home had her up sitting in the lounge one day. They told us that there was no way to know how long we might have to sit there and so we decided to head off home in the knowledge that we could be back up there in a couple of hours.

Then she kinda lingered on after we left and it was a couple of weeks later that we got the call to say she was bad again and that she had been taken to hospital this time. When we first saw her she looked no different that before except that she had developed a chest infection - which was certainly pneumonia - not a bout of the cold! It was clear though that this was the end of the road and there were other signs too then - like there had been no urinary output for 48 hours. She went from looking as though she was sleeping to a more comatose state and her extremities were ice cold. Sill she fought on though and it was two days later that she died.

If what I have typed is not what you want to hear or see then just let me know and I will delete the post for you but was just giving you something to compare as I know that sometimes it is the not knowing that is the scary part.

Fiona
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[Izzy]

I'm sorry to hear about your mum Panda. My experience with my mum had many similarities with Fiona's experience. I was amazed how long she lasted with only a few sips of water and a tiny bit of ice cream.

We had marvellous support from the district nurses but I understand how scary it is. Mum ended up with a catheter although there wasn't a lot of urine output.

We also got overnight support from the Marie Cure nurses which was invaluable.

I do hope you get the help and support you need. Wishing you strength for the days to come. x

 

[stanleypj]

I really feel for you Panda. Weekends and public holiday times can be awful when you are the only carer there, even in earlier stages of the disease. I can't offer you anything other than sympathy, but I admire your willingness to share your experience as this thread will help other people along the way.

 

[jude50]

My Mum died only a few months ago in hospital. She'd been suffering from a bad UTI and had 2 lots of antibiotics when she picked up a c diff infection. She went down hill quite reapidly but the last thing she said to me in amonget alot of mumbling was her Mum was in the next room and should she go to her. I put it down to the literal sense and said i would have a word and explain, my grandmother havind died in 1961. That was the last coherent thing she said to me, The day she died she was not responding to anything until I held her hand and whilst talking to her I felt her press against my hand. I think that by this time she was just so tired of everything it was her time to go and I told that if she felt she wanted to leave then she was. It wasn't until a few days later that I though about what she said and I did go goose bumpy. But who knows though it does comfort me to think that she is asafe surrounded by all those she loved before,

Jude

 

[Witzend]

My Mum died only a few months ago in hospital. She'd been suffering from a bad UTI and had 2 lots of antibiotics when she picked up a c diff infection. She went down hill quite reapidly but the last thing she said to me in amonget alot of mumbling was her Mum was in the next room and should she go to her. I put it down to the literal sense and said i would have a word and explain, my grandmother havind died in 1961. That was the last coherent thing she said to me, The day she died she was not responding to anything until I held her hand and whilst talking to her I felt her press against my hand. I think that by this time she was just so tired of everything it was her time to go and I told that if she felt she wanted to leave then she was. It wasn't until a few days later that I though about what she said and I did go goose bumpy. But who knows though it does comfort me to think that she is asafe surrounded by all those she loved before,

Jude

I would have gone goose-bumpy, too, and have been comforted. I know it would be a great comfort to me when the time comes if my mother says something similar.

Slightly OT (still goose-bumpy) my MIL was only 68 when she died, and for several days afterwards I had a very strong impression of her there in our house (where she'd always been very happy) - sitting on the sofa, I could almost see her there with her blue handbag.

Of course I put it all down to my daft imagination, and when my father died 6 months later at 72 (of the same thing) I fully expected to get a strong (imaginary) sense of him in my folks house. But there was nothing, absolutely nothing. And the thing was, my mother was dying for some sort of 'sign' that he was still there. He'd always said that if anyone wasted money on flowers for his funeral, he'd come back and haunt them - and she'd bought some flowers on purpose!

 

[cragmaid]

There is an "over there"...of that I am sure. Not necessarily in the religious sense, after all we all believe different things. When my sister was dying, she looked "over there" and smiled and said " hello" in such a way that you knew she'd seen someone she knew and was happy to have seen waiting for her. Goose bumps yes, but comfortable ones.

 

[panda57]

Thank you all for your replies.
FifiMo, I dont mind at all,reading about your experience.
In fact I have always been fascinated how people leave this world for the next, not in a macabre way but in a wondrous way as I do hope and believe we go on elsewhere.

Mum was much less mumbly today and more lucid.Although she dozed a lot of the time she had several cups of tea, bananas, some cake and half a creme brulee.
She is eating spontaneously too ie I just leave food on a tray and she reaches for it.
I managed to get out for a couple of hours today to go to my drama group's dress rehearsal. In many ways its easier that mum is just in bed as risks are very limited.
On thurs the crossroads carer is coming in the evening rather than the afternoon so I might actually get to see the play proper (normally I am helping backstage).This respite will be so welcome.
SW coming on thurs too, to discuss DP , respite etc, so much depends on whether I carry on staying here.
I am so grateful for the support on here.

Px

 

[Coletta]

Thank you all for your replies.
FifiMo, I dont mind at all,reading about your experience.
In fact I have always been fascinated how people leave this world for the next, not in a macabre way but in a wondrous way as I do hope and believe we go on elsewhere.

Mum was much less mumbly today and more lucid.Although she dozed a lot of the time she had several cups of tea, bananas, some cake and half a creme brulee.
She is eating spontaneously too ie I just leave food on a tray and she reaches for it.
I managed to get out for a couple of hours today to go to my drama group's dress rehearsal. In many ways its easier that mum is just in bed as risks are very limited.
On thurs the crossroads carer is coming in the evening rather than the afternoon so I might actually get to see the play proper (normally I am helping backstage).This respite will be so welcome.
SW coming on thurs too, to discuss DP , respite etc, so much depends on whether I carry on staying here.
I am so grateful for the support on here.

Px

Hi Panda,
It sounds like your mum is rallying a little bit if she is eating spontaneously. When my MIL came out of hospital, bed bound after a UTI she lasted another month, but the last 2 weeks she gradually ate and drank less, just a couple of teaspoonfuls. We got a lot of help without asking for it, arranged by the hospital, daily district nurse and visits from macmillan nurses, and hospice at home, who helped at night time.
I would have been very pleased if mum had said that God was calling her to the other side and I would have thought the same as you.
I have mentioned this before on TP, but have you heard of a lady called Lorna Byrne. She is an Irish lady who all her life has been able to see and hear Angels and speaks with them daily. When her husband died she saw the room crowded with angels and spirits from loved ones, including her dad's. She has written 3 books which are so comforting to anybody who has lost or is about to lose a loved one, whether a believer or non-believer and no matter which faith. She has been on tv and gives many talks. Her first book is called 'Angels in my hair'.

Coletta xx

 

[angelmarbella]

Thank you for all your comments on this thread. They do not apply to my family situation yet but they are really really comforting generally.

Angel

 

[panda57]

Coletta
Yes I have read Lorna Byrnes book and I found it inspiring and comforting.


When I came home today there was the usual message from the carer...much the same,didnt want a wash,hasnt eaten.

Mum was lying straight out in bed in a totally quiet room.She said I wont be here soon , its all going to stop. I've done enough....

I steeled myself ..are you talking about dying? Yes there wont be anyone here soon. I just want to be quiet..

I thought I have to be strong and ask.

Should we ask J to come over (my brother in australia)?

he's a long way away

But he will want to see you. If you die he'll have to come over.

He needn't bother..

I had been talking at work today about a moral dilemma about mum's funeral and what she wanted as when she did her will she had forgotten that she wanted to be cremated(this was after AD diagnosis).

So I asked..

You said that you didn't want to be buried you said that you wanted to be cremated and have your ashes put into the river in the Dales.

She gave a big smile.. that would be nice you could do that..

The thought of it over the years has always made me very emotional as it will be like setting her free from all the constraints she had over her life.


Anyway following this conversation she then pepped right up , had a cup of tea and a biscuit, watched some telly, had a joke with me and was generally more mum like than she has been for days.

I went out for two hours and she was fine and alert when I got back and drank another cup of tea and had a biscuit.
Though when I went in to say goodnight she asked me what the people downstairs were doing( no one else is here).

!!!!!!!!

Px

 

[FifiMo]

Hiya Panda,

As awkward as these conversations can sometimes be, I think it is good that you spoke to your mum about this. I often feel that the whole death subject is something which is taboo yet none of us are going to avoid death happening. It does seem that your mum is at peace with herself and that she is going through the process of "putting her affairs in order". Whether this means she is dying or not is another thing entirely. It could be that it was just things that she wanted to discuss and the very act of voicing them to you is enough to give her comfort in knowing its been dealt with, if you see what I mean.

I think you handled the situation really well despite the fact that it was probably more emotional for you than it was for your mum. At least now you have been given the answers to your dilemma so that when the time comes you will be able to do as she wishes.

Take Care,

Fiona

 

[panda57]

What a difference a day makes

Mum looking bright when I left for work this morning.
On return read carers message. Mum wanted to get dressed today though stayed lying in/on the bed.
Mum much more herself, and believe it or not actually asked for and ate some dinner. Only a small amount but more than the last 3 months.
Drinking tea with what was always her favourite biscuit.
However did get tetchy when I was helping take her day clothes off at 9.30 so I left her to go to sleep.

P x

 

[FifiMo]

Yay, at long last your mum seems to have turned the corner. So glad that she is on the mend and now it is time for you to take some time to recover too don't forget.

Brilliant news, long may it continue!

Fiona

 

[panda57]

Umm..............
Mum back to normal again. In bed,no food and wants to sleep.
Tomorrow I intend to have an evening off.Crossroads carer will come for 3 hours.
Px

 

[FifiMo]

Oh nooooooo! Do you think she has had another setback? As frustrating as all this is, you need the time to do your own thing too. I hope you enjoy the play and if nothing else get the benefit of knowing someone else is doing the caring during that time.

Fiona

 

[panda57]

More support in place

Hi FifiMo
Well I had my night off and got to watch half the play, was good to see everyone backstage.
The SW came yeterday and we discussed respite options, she was very helpful and supportive.She is going to discuss with her manager how I could use PB for respite.There are two options, paying for someone to come in or using a care home for respite.
I have said I dont mind too much staying during week but would love to be able to have weekend with hubby in our home or be able to have a few days away.
Today had call from palliative care nurse who is going to visit in 10 days time to discuss end of life care plan.
I am pleased that I now have agencies involved who should be able to offer support when required.I now include TP in that.
Mum continues to change every day.Sleeping a lot.Very perky when I came home today though carer couldnt get her to do anything during day.She had 2 cups of tea (and no spitting out!) and a biccy.But when presented with dinner ate 2 square inches only.
She didnt know where she was tonight, she didnt recognize her room,was nonplussed when I said she'd lived here for 50 years...
Px

 

[FifiMo]

Hiya Panda,

I am so pleased that you have now got people to support you locally as that should make a difference and you then at least know that someone understands your circumstances when you contact them for help. My sister and her partner had a PB for her partner's care and it is working really well for them. What they like is that it gives them freedom over when to use it and how much of it to use. For example, if they give you an allowance that covers 48 hr care over the weekend, then you might choose to only use 24 hours and bank the other 24 hours so that you can have, say, at least a long weekend once a month. This is how my sister has to use it as her partner could not stay on her own over night and if my sister needs to go away with her work then she knows that between them they have banked enough hours to make this possible.

I think that you will find that the situation with your mum becomes a vicious circle as it certain did for us. By this I mean that she sleeps a lot because she is not taking in many calories and the lack of calories also starts affecting brain function too so that it also seems to slow down and as you are finding, it is slow to recognise where she is, that kind of thing. This, it would appear, is exactly how it goes and the SALT that attended my mother was very helpful in explaining things to us and she said that she didn't want us to get a shock when different parts of the body started slowing down because not enough calories were being taken in order to keep all the functions going. We found this sad, because food plays such an integral part of our lives and whilst you can work around someone not remembering something, there is no alternative that you can put in place to cover this aspect of the disease.

I hope you have a decent weekend and that your mum, if nothing else, remains on an even keel.

Fiona
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