Is Mum heading for end if life?

[canary]

((((((((((((hugs)))))))))))) @Raggedrobin
My mum did the same. In the last 18 months of her life I was told 3 times that I was looking at the end, only for her to rally.
It a tough limbo land to live in - "I dread it but want it to be over" - I know that feeling well

 

[Scouts girl]

Yes I know that feeling so well. I suppose in a way I was lucky that my dear mum only really reached the end of her life for a few months and the end for her did not last too long. I sat by her bedside just wanting her awful struggle to end but dreading losing her. My mum lost over half her body weight during these last few months and had to turned every couple of hours but I am afraid for her bed sores were unavoidable as she insisted on sleeping on her back. My thoughts are with you and give you virtual strength. I hope the end is peaceful for your mum.

 

[Selinacroft]

Hi Raggedrobin
"One, particularly kind and conscientious carer told me with great excitment that Mum had sat up, eaten a whole carton of yogurt, and said a few sentences yesterday. To me, it feels like she is just prolonging the agony. Mum will be able to keep going on a teeny amount of calories as she is completely inactive now. But she is barely conscious most of the time, the veil is over her eyes and on she goes. I dread it but want it to be over."

Sending you hugs, I was in this situation about 4 days before Christmas. I saw Dad choking over his medication and I asked the nurse if he really needed them. I knew in my heart of hearts his time had come. She barked some reply along the lines of "Of course he needs them the Dr has prescribed them" with every ounce of breath saying that I was a murderous individual to dare suggest something like that and that her sole duty was to eek out dad's suffering as long as possible and as long as some muppet kept paying £1100 per week.
2 or 3 days later she called me in to say that Dad was going to pass imminently and was expecting me to burst in to tears. I had enormous restraint not saying something but I would just say trust your own judgement in these things and you will know when mum is finally winding down. My thoughts are with you and your family and hope your mum passes soon and peacefully.

 

[malengwa]

Ragged Robin, I wish you strength. Although I miss mum every day I was glad her end was brief and she never rallied. It was still exhausting though so do look after yourself.

 

[Sharonk43]

i lost my dad in March and he just decided to stop eating, drinking and taking meds. it was horrible to watch but he was the same, sleeping but more like unconscious, he held on for 3wks as he lived off his body fat. just keep this in mind, the hearing is the last thing to go do makesure you talk to your mum, tell her how much you love her and if you can tell her its ok to let go. keep holding her hand, stroking her head, she knows you are there, my thoughts are with you x x

 

[Raggedrobin]

Thank you so much for your comments, Canary, Scouts Girl, Malengwa and Sharon and Selina. Selina I had a similar thing with the home over antibiotics. I felt it might have been kinder to let Mum succumb to a chest infection she had - month ago - maybe not - but the nurse was adamant 'doctor says antibiotics' and therefore that is set in stone. Taking a long view not having the antibiotics might prevent the slow death that is happening now and no matter how careful they are she may end up with bedsores and other painful things.

Well, this new year is an odd one for me. We didn't celebrate at all last night. My partner has gone back to work 200 miles away and so I am here on my own, just kind of waiting. Feels so hard to do anything much, apart from going in to see someone asleep.

 

[Selinacroft]

Raggedrobin,
If your mum has an Allow a Natural Death form AAND , it might be worth speaking to someone in charge of the home and stating you don't want anti biotics or perhaps make an apt with the relevant Dr. As soon as Dad arrived in the care home they identified a UTI but I had stressed at every opportunity I did not want more antibiotics given. Dad had already spent over 6 months of the previous year on ABs and 5 weeks on IV Abs in hospital. The senior nurse I spoke to at the care home said she would write this down in dad's notes and got me to sign against this . I felt that she thought I was a bit evil but I think she understood later on why I had requested this and came round to my way of thinking. This was a different nurse to the one I was talking about above with the routine medication. It's a really hard call to make but if you think it is the best thing , you have to believe in yourself as you are fighting your mum's corner as no one else will.

 

[Raggedrobin]

Thanks Selina. Mum of course has a DNR but I never heard of an AAND, I had better google it. Having said that, once before they said that antibiotics were to make her more comfortable, for a uti. So I have to weigh that up too.

 

[Raggedrobin]

So it was all looking dreadful and then I went in today and Mum was sitting up, had good colour, had brightness in her eyes, was chatting and was eating!!!!! Instead of being delighted I found myself crumpling.

All through Christmas she seemed so bad, my partner and i rearranged are lives once again, so that I could stay up here with her and now I find myself up here again for an indefinite amount of time, feeling my life is once again on hold.

I don't wish her dead. Or do I? I just want it to be over, I am so tired of this. Yes, each time she has a period of not eating she gets a little weaker and each day she gets a little older but this is now nearly 5 years of my life I have been in a sort of 'high alert'. I am so fed up. Apologies if this sounds insensitive to anyone whose loved ones have passed and are now grieving.

 

[canary]

No, its not insensitive - its the truth.
This roller coaster ride is hard and who wouldnt it to be over.

 

[lemonjuice]

So it was all looking dreadful and then I went in today and Mum was sitting up, had good colour, had brightness in her eyes, was chatting and was eating!!!!! Instead of being delighted I found myself crumpling.

All through Christmas she seemed so bad, my partner and i rearranged are lives once again, so that I could stay up here with her and now I find myself up here again for an indefinite amount of time, feeling my life is once again on hold.

I don't wish her dead. Or do I? I just want it to be over, I am so tired of this. Yes, each time she has a period of not eating she gets a little weaker and each day she gets a little older but this is now nearly 5 years of my life I have been in a sort of 'high alert'. I am so fed up. Apologies if this sounds insensitive to anyone whose loved ones have passed and are now grieving.

Doesn't sound at all insensitive to me.

Like you I had my life on hold for over 5 years with many emergencies, when it could so easily have been 'the end' and yes sometimes I was disappointed when mother rallied, only to have less quality of life.

In the end I just carried on as normal and even told my mother I wasn't going 'to sit in vigil' any more as I was fed up of so many 'dress rehearsals'.

 

[Selinacroft]

Raggedrobin, I so feel for you and I was having exactly the same thoughts for the same reasons. I also feel I've lived on high elert for several years and Dad had so many moments when he could have gone but kept bouncing back , as you say a bit worse each time but back he came. No words of wisdom, just hang in there, your mum will choose her time when she is ready.

 

[Raggedrobin]

lemonjuice, I got to that point about a month ago, where I decided to go back down south, that I couldn't just keep kind of waiting anymore. But then over Christmas things looked so bad I stayed back up here and now I just feel at sixes and sevens. i don't want to leave her at the end, But I can't bear this uncertainty any more.

Thanks Canary, Rollercoaster is the term I tend to use, too.

 

[Amy in the US]

I think you can only be on high alert for so long before you get worn down. It's understandable.

I know exactly what you mean about wanting it all to just be over. I know that's not meant as a dig to anyone who is grieving. How you feel is just that, how you feel. I don't know anywhere besides TP where I can come and say precisely how I feel about all of this, and there is always someone who knows what I mean and can sympathise.

The hospital stays are really hard, both for the PWD in hospital, and for the carers and family who visit and try to manage everything. It's thankless and grinds you down and no wonder you're feeling low. Christmas and New Year's probably haven't helped with that.

After my mother's fall/fracture/surgery/hospital stay/rehab stay/infection she fought for months afterwards, I had some conversations with the GP and the nursing staff at her care home. The GP agreed that some of her long term medications (like statins for cholesterol) could be discontinued because certain issues (like high cholesterol) are no longer a medical priority. Maybe it would be possible for you to do something similar, at least to get everyone on the same page about care decisions and priorities?

I also know that for me, at least, dealing with dementia often leaves me feeling that there is usually not a clear correct decision, and that whatever I decide, it's wrong (at least in part). If I read your posts correctly, you know that feeling as well.

It stinks and I'm sorry. Please keep us updated, about your mum and you, when you have the time and energy. Take care and best wishes to you.

 

[Raggedrobin]

Thanks so much Amy. Mum isn't on any medication at all any more, they are just feeding her when she will accept it (with pureed food and thickened drinks).

I kind of stopped coming on here for a while because I was trying to 'get away' from dementia but you remind me how important it is to be able to talk to people who really, really understand.

 

[Amy in the US]

@Raggedrobin, we all do what we need to do. If that means more or less time on TP, go for it!

I hadn't thought about all of this as a rollercoaster, but that makes a lot of sense. I used to love rollercoasters but this one I'm not liking so much. Can I get off, please?

 

[Raggedrobin]

So the rollercoaster continues. Today I got a message to ring a particular nurse at Mum's care home. Unfortunately she had finished her shift and I got a student nurse. She said they had called the doctor for Mum but that the doctor was too busy so had sent some sort or nurse, who then recommended that Mum was seen by a doctor... I guess this is the NHS crisis happening right now.

Anyway the thing is, the nurse didn't say why they were calling the doctor, so obviously I asked her and she was terribly vague. So I said 'Is this to put Mum on End of Life Care' and she said she thought so. I won't really know until I see the other nurse tomorrow. Feels ironic that Mum had started eating again and now they are calling the doctor because she isn't eating.

So I won't know until tomorrow but actually I would like Mum to be on end of life cafe, because I think it is time for me and the home to acknowledge this time she isn't going to rally in a significant way, despite doing so for a few hours the other day. Also to be sure she is really being kept as comfortable as possible.

I am struggling in myself at the moment. I have no motivation to do anything, anything at all. I don't want to go out, I don't want to see people, I am just sitting here, a big lump on the sofa, waiting, cocooned in a weird sort of lethargy. Nothing to look forward to right now, I know the next thing in my life, probably, will be my Mum's passing. She has had a good innings, at 100, but it still doesn't seem to make it feel any easier, the weirdy mix of emotions, the relief we may be nearly there but the fear of that too.

I missed Mum the most this Christmas. Having nearly always spent it with her and currently being in her house, I just miss her presence in the armchair, sharing settling down to a tv programme ( she would have loved The Crown which I have been netflix bingeing on) or talking about news or a book one of us has read. Such simple things but its been a good few years since we were able to have those chats. And somehow she represented a sort of security in my life, Mum was always there.

Excuse my rambling on.

 

[Raggedrobin]

Spoke to the right nurse yesterday and indeed my Mum is now on end of life care. Sounds weird but it feels like a huge relief to know I have not, on this occasion been building up to something and then she has rallied. They confirm she really is past that.

I learnt something I didn't know, that if someone is on end of life care, it means a GP has to visit them at the home and agree this and then see them every 2 weeks to continue it, presumably as a safeguard. But the interesting bit is that once they are on it, when the person dies, there is no need to involve the coroner or have a post mortem, as the person's condition has already been noted.

What I hope for my Mum is that she just slips away in her sleep.I do so hope that. In the mean time, I feel almost 'positive' in that I can proceed to start clearing up her affairs ready for the end and also plan her funeral. Maybe that all sounds callous but I want to deal with as much as I can before she goes, as I know in the oast that the period afterwards can feel so draining I might not want to have to do things then.

 

[love.dad.but..]

No raggedrobin it doesn't sound callous at all...it sounds practical and proactive and gives you a bit of purpose rather than as you say in a previous post sitting in limbo not able to feel like doing anything. Be prepared still to have ups and downs and the emotional rollercoaster of feelings that go with it..when dad was at end of life his sheer determination in life meant he lingered clinging on by his finger tips for longer than I had imagined after fluids had stopped. But...like a good many of us on TP felt it is a relief for your mum that her final days/weeks will be limited and she will be released from this terrible illness. Take good care of yourself also during this time supporting your mum and I wish you strength and wish for your mum peace and comfort as she gently slips away...oh and a big hug for you for what lays ahead

 

[Raggedrobin]

Awww thanks for that love.dad. Yep, not out of the woods yet as it were. I am terrified of getting this dreadful flu that is going around this year, I feel like it might knock me out at the wrong moment. Fingers crossed not.

Actually one of the things I have been doing today is trying to figure out why she has a letter from the DWP saying that she owes them £5000 in overpayments! Thank goodness she doesn't have to deal with this. But I have spent hours trawling through the paperwork trying to figure out how they arrived at this, there is no explanation with the letter at all. So will have to ring them to sort this out on Monday. Keeps me busy...