Decline, is it the end?

[Sandybt]

hello, new here.

My mum is 90 has had dementia for years and after my dad passing who was mums carer, has been in a lovely care home for 18 months. She has lost so much weight, won’t/can’t eat and now has been assigned to the palliative care team. I was taken into a room last week to make sure the end of life plan was still relevant, ie no hospital, just made comfy in home if possible. Is this the end? She has no quality of life so I think she deserves to be at rest but feel guilty for thinking this. She cannot go on not eating, drinking little. She spends lots of time in bed but the home try if possible to hoist her to her chair and get her to the lounge with other residents but she looks so hunched up and uncomfortable. I visit every couple days, when will I know I should be there, to be there at the end? Thank you

 

[karaokePete]

Hello @Sandybt, I can read the sadness in your post and wanted to let you know that you are welcome here.
I think that it's hard to know when the end will come as the time varies so much. Certainly there was a big time difference between my mother and father when they passed. However, I hope others with more experience of this situation than me will offer some of their experiences to you.

There is an AS Factsheet about this issue so, in case you haven't seen it, here is a link to it. I hope it helps you - just click on the link.
https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_end-of-life_care.pdf

 

[canary]

Hello @Sandybt and welcome to the forum, though Im sorry you have found us under such sad circumstances.

As your mum has been placed under palliative care, then, yes, I think you are looking at the end although it is surprising how long they can go at this stage. When mum was put on palliative care she went a further nine days before she passed away. After nearly a week mum slipped into a sort of coma and she was put on pain killers and something to relax the muscles using a syringe driver, so in that way she was kept comfortable and pain-free until she died.

The cares will have a very good idea when she is near the end and will probably contact you. One change you will notice is that her breathing will change - there will be very pong gaps between breaths and several times I thought mum had indeed died until she took another breath. This stage is unlikely to go on longer than a couple of days and is usually a matter of hours. You will also find that her limbs go cold and her eyes turn milky. Please dont be scared by this, it is a natural process. You can help a lot by being with her. Remember that hearing is the last thing to go so talk to her and play her favourite music. Make sure you say the important things to her - I love you, I forgive you, please forgive me and tell her that its OK for her to go. Comb her hair, put moisturiser on her skin and lips as they will be very dry. The carers/district nurses may be able to give you little sponges or brushes to keep her mouth moist.

I understand that you want to be there when she goes - I did too and stayed with her for 48 hours sleeping on her floor, but then I had to go and check on my husband and she passed away within minutes of me leaving. One of the carers said that this happens quite a lot and she thought mum didnt want to pass away when I was there. Being there for the final seconds is not so important as the time you spend beforehand, so dont be too upset if a similar thing happens to you.

This is a difficult and lonely time when you feel in a sort of twilight world. If you wish to keep posting throughout this time we will be here to hold your virtual hand.

 

[Hazara8]

hello, new here.

My mum is 90 has had dementia for years and after my dad passing who was mums carer, has been in a lovely care home for 18 months. She has lost so much weight, won’t/can’t eat and now has been assigned to the palliative care team. I was taken into a room last week to make sure the end of life plan was still relevant, ie no hospital, just made comfy in home if possible. Is this the end? She has no quality of life so I think she deserves to be at rest but feel guilty for thinking this. She cannot go on not eating, drinking little. She spends lots of time in bed but the home try if possible to hoist her to her chair and get her to the lounge with other residents but she looks so hunched up and uncomfortable. I visit every couple days, when will I know I should be there, to be there at the end? Thank you

Dear Sandybt

The term 'end of life' evokes certain feelings which are not always helpful when you, as a child of a loved one, have been party to the long and often very difficult dementia journey, which has, with all its ups and downs, had a kind of continuity, a pattern, a regime. Even although this 'pattern' of events will have been often hard to bear and a constant drain on both your physical and mental resources, it was nevertheless an ongoing schedule, enabling a sense of being able to offer oneself to the loved one in any way possible, both practicable and above all, tangible. And now this changes. Your loved one sleeps longer, perhaps throughout the day. A reluctance to partake of food or drink becomes a norm, despite all efforts to the contrary.. A kind of lethargy comes into play. All of this, for us, as carers, as a child playing out the role of carer for a parent, seems to undermine all possible means by which you have strived to sustain a life so long blighted by dementia. Your role as carer, in effect, comes to an end. But your 'reality' as a child of that loved one, continues. And as such you focus very meaningfully on 'comfort', that being the fundamental expression which pervades this period from hereon. The palliative care team are the key to that comfort and the mouthpiece for everything within the framework of that specialist care to be communicated to you. These are the practicable things and they are very important. The altruistic and innate sense of wishing 'to be there at the end' and the culmination of such a long and challenging journey, tests both heart and mind in a manner which is not really touched upon in life's finite span.

So 'comfort' is what now becomes the key word. What is best for our loved one. And you must not ever feel 'guilty' for thinking about 'being at rest'. We must always strive to look upon 'quality of life' not as a comparison, but as a state of being. We cannot look into 'dementia mind' nor truly understand the world which our loved one inhabits. But we can understand our humanity and the open truth which is available to all of us as sentient beings - that of love.

End of life is both natural and inevitable. Days or months? Who can tell. When that very special time arrives, I am very sure that you will be there.

 

[Sandybt]

Thank you for replies it’s of great comfort. Mum is still in decline and felt today her breathing is very laboured and rasping, she is just in bed, not eating or drinking, feel I’m just waiting and so is she. Xx

 

[canary]

(((((hugs)))))))) @Sandybt
This waiting is the worst time. It is the last long vigil.

 

[worried2]

Thinking of you and wishing you strength to cope at this difficult time. Please don’t feel guilty: it’s because of your love for your mum that you don’t want her to suffer and to be at peace.

 

[Duggies-girl]

hello, new here.

My mum is 90 has had dementia for years and after my dad passing who was mums carer, has been in a lovely care home for 18 months. She has lost so much weight, won’t/can’t eat and now has been assigned to the palliative care team. I was taken into a room last week to make sure the end of life plan was still relevant, ie no hospital, just made comfy in home if possible. Is this the end? She has no quality of life so I think she deserves to be at rest but feel guilty for thinking this. She cannot go on not eating, drinking little. She spends lots of time in bed but the home try if possible to hoist her to her chair and get her to the lounge with other residents but she looks so hunched up and uncomfortable. I visit every couple days, when will I know I should be there, to be there at the end? Thank you

So sorry for you. I am dreading this, dad has dementia but is still his normal happy uncomplicated self. A real gentleman and no trouble really. He also has oesophageal cancer and is on palliative care only. We have no idea how long he has, he is 88 and must be a very strong person too have fought this far.

I am scared of what is to come, dad thinks he is fine and very well for his age, he has forgotten his dementia, he has forgotten he has cancer, he has forgotten that he weighed less than nine stone a couple of weeks ago, he has forgotten that he has had a stent fitted so that he can eat.

He has put on half a stone since then and says he feels very well and he does look better but he won't get better although he has forgotten that as well.

We do our best, it is all we can do. This is such a cruel disease and I will admit that I pray that my dad will just slip away peacefully in his sleep one night (not yet though) and not have to suffer at the end. I can't bear for him to suffer because he is the nicest and kindest man I have ever known.

Don't feel guilty for wishing your mum a quick peaceful end, it is perfectly natural to wish this and I hope this happens for her.

 

[Sandybt]

Hello, thank you for all your wise words of comfort. Mum passed yesterday, it’s hard to believe I thought it was the end in May and she passed 16 July, one month before her 91 Birthday. It was definitely time and a release for her, she deserved to be at peace. Not eating and drinking and down to 6 stone. I did notice the day before the pooling of blood in her feet, which I read on here. The care home were amazing I have nothing but respect for the staff, who looked after mum so well and genuinely upset when she passed. Good wishes to all on here may you get support and advice and take comfort that others are in the same position with this terrible disease. God bless x

 

[Jezzer]

Hello, thank you for all your wise words of comfort. Mum passed yesterday, it’s hard to believe I thought it was the end in May and she passed 16 July, one month before her 91 Birthday. It was definitely time and a release for her, she deserved to be at peace. Not eating and drinking and down to 6 stone. I did notice the day before the pooling of blood in her feet, which I read on here. The care home were amazing I have nothing but respect for the staff, who looked after mum so well and genuinely upset when she passed. Good wishes to all on here may you get support and advice and take comfort that others are in the same position with this terrible disease. God bless x

Please accept my condolences at this sad time. Your precious mum is now free of this awful disease. I am so glad the care home staff were so supportive and that they took such good care of your mum. God bless you and your dear mum. Thank you for your good wishes, especially at such a difficult time for you. Wishing you strength in the difficult days ahead x

 

[Scouts girl]

My condolences to you too Sandybt. Take comfort that you did all you could for your lovely mum and that she is now at peace with no more suffering. How lovely that the care staff took such good care of your mum and you can be comforted by this. There will be plenty of tears and ‘what ifs’ in the weeks and months to come but wish you strength. Take care xx

 

[yak55]

So sorry to read about your mums passing sandybt may she rest in peace x

 

[Izzy]

I'm sorry to read your news @Sandybt Sending my condolences.

 

[canary]

((((((hugs))))) @Sandybt
That was a long time, your mum was a strong lady.
Im glad she is now at peace.
Be gentle with yourself

 

[susanne1964]

My deepest condolences at this very sad time, she is finally at peace x