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Am I being too mercenary ?

prittlewell

Registered User
Jan 28, 2020
76
0
As posted on other threads, Mum is 91, has had dementia for 8/9 years, has to be hoisted every move, and is doubly incontinent. Mum was diagnosed as end of life on 9th June. Mum is self funding, but has now been placed on CHC funding, due to her condition.

She has had all meds withdrawn, and has patches for any pain she may have as she can no longer take tablets. We were called up last Wednesday as the home thought she had deteriorated, but when we got there, she didn’t seem to us to have changed. She is sleeping most of the time and now no longer seems to recognise us. She does seem to have gone down hill slightly over the past week.

We visit once or twice a day but just sit with Mum. The home has provided a carer to be with her 24/7, who leave when we visit.

My issue is, that we know Mum is going to pass at some point, and I cannot bear to see her in this state. I have POA, and one of my duties is to do what I think Mum would have wanted, and she certainly would not want to go on in this state.

When we are in the room, we check the carers log to see what Mum has done since the last visit, and whilst Mum MUST obviously be offered food regularly (generally a yoghurt) and water or juice, it seems to me like one or two of the carers are actively ‘encouraging’ her to eat. One young lad writes in the log as though he is really proud as he managed to ‘get her eat a whole yogurt, and take 35 syringes of water’, whereas most of the other carers only manage 2/3 small spoons of yoghurt and 4/5 syringes of water…….

Here lies my problem……..I don’t want to sound harsh and mercenary, but I don’t want Mum to continue in this state for any longer than she has to. Whilst I want her to receive any food and drink she wants, I don’t want them encouraging her to eat more, as this could prolong the ‘end of life’ stage, which is not what Mum would have wanted……
 

lollyc

Registered User
Sep 9, 2020
376
0
I am not, yet, in your position, but I don't think you are being at all harsh or mercenary. Your Mum is only going one way, and you, quite rightly, don't want that prolonged any longer than is necessary.
I really can't understand the need to eke out every last drop of life, rather than allow someone to have a peaceful end. It's hardly as if she is going to have some miraculous recovery at the eleventh hour.

My father died of cancer. At home, as he wanted, having had morphine injections from the hospice nurses. From his agreement to have the first injection until he died was 48hrs. He had 3 injections, and was unconscious from the first one. It was the 'best' death possible in the circumstances. I fear my mother, like yours, will not be so lucky.
 

canary

Registered User
Feb 25, 2014
15,516
0
South coast
My FIL had vascular dementia and when he died I suspect that MIL was beginning to develop the same, but at the time I was pretty clueless about dementia and I was never the main carer for either of them.
I remember when FIL was declared to be End of Life. He was, at that stage (I now understand, but didnt know what what was happening at the time) refusing food and drink, but MIL was terrified of losing him and was pretty much forcing yoghurt and water into his mouth. She would spend literally hours getting him to swallow the yoghurt, chasing his mouth with a spoonful as he squirmed and tried to avoid it and was triumphant that she was able to get him to eat 2 yoghurts and half a pint of water every day. It made no difference to his survival though, because he was already dying all the while she was trying to feed him and he died three weeks after being put on End of Life.

I understand your feeling and by the time my mum got to that stage I didnt want her life prolonged any more either. I doubt that the yoghurt will make much difference to your mum, but you might like to have a word with the manager and ask that, although food/water should be offered, your mum should not be distressed by persistent offering of food/water.
 

lemonbalm

Registered User
May 21, 2018
1,711
0
Hello @prittlewell

My mum is in the same state. The carers are always very pleased when she drinks or eats anything (mainly yogurt, custard or occasionally porridge of some sort, to which they add honey and cream to increase the calories). I think they feel that it gives her some comfort and even a little enjoyment. Mum will stop point blank when she is ready to I guess.
 

MartinWL

Registered User
Jun 12, 2020
960
0
I can see this happening in the case of my mum in the future, she has had bouts of not eating but the care home staff have encouraged her and now she seems keen on egg and chips for lunch. I don't think you can ask the care home to stop trying, it is their job to keep residents healthy if they can. I suggest you do as @canary suggests and ask them not to pressurise her but you can't suggest to the care home that they encourage her to die, they cannot do that, even though it may be the kindest thing in the circumstances.
 

Lawson58

Registered User
Aug 1, 2014
2,493
0
Victoria, Australia
I don't think it's anything mercenary in not wanting your mother to continue existing as she is.

Many years ago I heard this described as prolonging dying rather than sustaining life and I know it made me stop and think about what my own attitudes were.

I hope that you find peace and reassurance in the next few days.
 

prittlewell

Registered User
Jan 28, 2020
76
0
Thank you all. Mum has not had any food today, and early morning had a few sips of water. We have been with her all day, other than when our two children took over for a couple of hours to give us a break - so we could go home and pick up the duvet our 2 yo Boxer had destroyed. We were so drained we did not even care.

Back at the home, and Mum has had a morphine shot as she was becoming a little agitated, and is now in a fairly deep sleep. She breathes deeply for a couple of minutes and then seems to go 20 seconds or so without breathing, and each time we think she won’t restart 😢

We have decided to give it until about 7pm and then we will say our goodbyes, in case Mum goes overnight, and feel there is not a lot we can really do here.

Mum will leave when she is ready…..
 

prittlewell

Registered User
Jan 28, 2020
76
0
It’s Monday, and Mum is still with us. The Care were convinced she would have passed yesterday, but her breathing was going from normal to laboured, and back. While we were there yesterday evening quite a few of the care home staff came in to say goodbye to Mum as she was really well liked there after her 3 year stay.

The home have allocated someone to sit with Mum day and night when we are not there so we know she will not pass alone.

I feel bad as I have gone up this morning and as Mum now has the ‘death rattle’, I just could not stay. I just cannot remember my Mum making that noise, although my DIL who is a palliative nurse, tells me it does not distress the patient, it just sounds awful. She also told me it is unlikely to be long now…..

I think the last 12 days have taken its toll, and I just need it to be over now…..😢🙏
 

canary

Registered User
Feb 25, 2014
15,516
0
South coast
I remember this twilight limboland well. The physical changes can be harrowing if you are not expecting them.

There will be an end
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))
 

prittlewell

Registered User
Jan 28, 2020
76
0
I have just had a call to say Mum has passed. Part of me is sad, but part is relief that she is no longer suffering.

Thank you all for the support I have received during Mum’s Journey 🙏

Onwards and Upwards

Martin
 

Millwill

New member
Jun 14, 2021
8
0
Condolences.
But no don't feel bad, take any emotion that is going. For it's better out than in. At the minute I'm in the angry stage, because if you don't feel something then it just festers inside and it will eat you up. . Bereavement is multi staged but I don't think people understand you can have it before they die.
Because of medicine, and technology and the way the system won't let patients and family organise their own end, everyone is forced to , as the other posted mentioned, watch their loved ones life be extended for no reason. Hopefully with what is happening in Scotland today, governments will rethink this whole life for life sake attitude, because it doesn't do anyone any good, least of all the patient.
So be good to yourself, grieve in your own way and don't feel guilty about anything. You're not mean, let go and allow your mum to pass on, don't let negative emotions tie her to you. Be free, time to be yourself!
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,941
0
High Peak
I'm sure your mum wouldn't have wanted to remain that way for any longer - she would have backed you all the way.

My condolences and best wishes to you.
 

Banjomansmate

Registered User
Jan 13, 2019
3,009
0
Dorset
There’s nothing wrong in being thankful that a loved one’s distressing illness is over and knowing they are at peace at last.
With all good wishes,
Carol.