Mom’s decline and end of life choices

[pitufi]

The last few weeks have made me think the end is near for mom.

She doesn’t want to leave bed, she refuses to eat more often than not, same with drinks and same with her tablets.

She is aggressive if woken up and her mobility is disappearing fast.

I’ve already discussed w her gp and care Home about not wanting to extend her life longer than it needs to. I know she would have hated seeing herself this far gone all skin and bone, so this is the only thing I see as being fair to her.

If she refuses food, is that how she will go? I was very much going thru all this in my head in a matter of fact way but today it’s hit me that even though I know mom will more than likely die this year, I’m not ready.

 

[Heylowe]

Hi my dad is in a very similar situation but at the moment still eats. He has no mobility & sleeps lots - like yours, if woken he is aggressive & shouts, sometimes through fear. I spoke to the admiral nurses a while back, and they said if he stops wanting to eat, then that's a sign that he's ready to give up fighting this awful disease.
I don't think we're ever ready for the end, despite it meaning they're free from this heartbreaking condition. I'm sorry I can't offer any advice but I'm wishing you all the best.

 

[Baby Bunty]

Hi to you both..i totally understand how you feel..we have had a horrible 10 days with mum..sleep and then when awake eyes closed..ate little and drink little..doctors said she had a chest infection..then 2 days ago she bounced back..only to be back in bed today with hardly no food and drinks...i think its so so hard to try and prepare for the end..!!! When i think off it i cry inconsolably!!!..and feel over whelming sadnest..hugs to you both and your dear ones

 

[LadyA]

It is very hard. And no matter how long it is coming, we are never ready for that final parting. In fact, I think when someone has been ill for a very long time, we are even less ready, because somehow, subconsciously, even though we know in our heads what's happening and how it will end, I think our hearts believe it will never happen - that things will just stay in this limbo of them being so ill, hovering between life and death - but never actually leaving us.

At end of life, very often, the person stops eating and drinking anything up to a couple of weeks before death. This can be very distressing, because every instinct tells us that they must eat or drink. That they are starving. That's not the case however. They aren't dying because they are not eating and drinking. They are not eating and drinking because they are dying. Their system is shutting down, and is no longer processing food and drink.

A very stressful time for you all, @pitufi , @Heylowe and @Baby Bunty .

 

[Baby Bunty]

It is very hard. And no matter how long it is coming, we are never ready for that final parting. In fact, I think when someone has been ill for a very long time, we are even less ready, because somehow, subconsciously, even though we know in our heads what's happening and how it will end, I think our hearts believe it will never happen - that things will just stay in this limbo of them being so ill, hovering between life and death - but never actually leaving us.

At end of life, very often, the person stops eating and drinking anything up to a couple of weeks before death. This can be very distressing, because every instinct tells us that they must eat or drink. That they are starving. That's not the case however. They aren't dying because they are not eating and drinking. They are not eating and drinking because they are dying. Their system is shutting down, and is no longer processing food and drink.

A very stressful time for you all, @pitufi , @Heylowe and @Baby Bunty .

Thanyou ladyA for your reply..its so hard as i said earlier she bouncy back and we had a fabulous 2 days..but my sister was with mum today and agian in bed eyes closed eating and drinking very little.she only weights 39kg now..bless .i think we are now having more bad days then good..ever time she ill..i think oh this is it!!..my emotions are completely shattered and as i said she was brillant for 2 days..it certainly is an emotional rollcoaster!..thanks again for your reply..this forum as really helped me.xx

 

[Baby Bunty]

Thanyou ladyA for your reply..its so hard as i said earlier she bouncy back and we had a fabulous 2 days..but my sister was with mum today and agian in bed eyes closed eating and drinking very little.she only weights 39kg now..bless .i think we are now having more bad days then good..ever time she ill..i think oh this is it!!..my emotions are completely shattered and as i said she was brillant for 2 days..it certainly is an emotional rollcoaster!..thanks again for your reply..this forum as really helped me.xx

Ps gp now pxd another course off anti botics today..this is 3 course in 4 weeks.xxx

 

[Malalie]

Nobody is ready - wouldn't it be nicer if it was a sudden heart attack or something?

It's just normal life and if you think that your Mum has nothing left in her it would be the kindest way to let her go . Lady A said this sometime ago on this forum. 'They aren't dying because they are not eating and drinking. They are not eating or drinking because they are dying." MIL was put on rehydration , taken off, put on again, got ready to be discharged, and then died before she could be taken back to her care home to die.

She died in an open ward with other dementia patients screaming and crying for help (...as they do - I know that - I know they get agitated and distressed easily, and it wasn't the nurses fault.) It was a hideous experience for all concerned at the hospital.

She went into the hospital from the care home with a chest infection, then got MRSA and she never came back. I would urge you to get the local doctor to help and avoid the hospital if you can.

 

[Baby Bunty]

Nobody is ready - wouldn't it be nicer if it was a sudden heart attack or something?

It's just normal life and if you think that your Mum has nothing left in her it would be the kindest way to let her go . Lady A said this sometime ago on this forum. 'They aren't dying because they are not eating and drinking. They are not eating or drinking because they are dying." MIL was put on rehydration , taken off, put on again, got ready to be discharged, and then died before she could be taken back to her care home to die.

She died in an open ward with other dementia patients screaming and crying for help (...as they do - I know that - I know they get agitated and distressed easily, and it wasn't the nurses fault.) It was a hideous experience for all concerned at the hospital.

She went into the hospital from the care home with a chest infection, then got MRSA and she never came back. I would urge you to get the local doctor to help and avoid the hospital if you can.

Thanks for reply..omg that must of been horrendous for you and your loved one...yes totally agree no hospitsls..i am more confused with my emotions as i said mum seems to bouncy back..but the ill agian today..i feel quiet bless as mum is happy in her own little world if that makes since..xxx

 

[Babymare01]

My mum is bedridden barely opens eyes etc but still eating though is fed with pureed food. I have discussed with her GP that once/if she stops eatng/drinking I do not want us to intervene. We also discussed that now mum will not be taken to hospital regardless of reason but nursed in the NH. The GP and NH support me 100% thankfully. So I sit here waitng

But I did ponder the other day has I fed her lunch that how some 50 years ago my mother probably fed me pureed food on a small spoon. It actually brought a smile to my face for some reason.
xx

 

[canary]

I think this bouncing back and rollercoaster is common (and very tough emotionally for the carer) Mum did this and I was told three times that we were looking at the end, only for her to bounce back. There were other times when she would stop eating for a few days, just to restart again. Eventually, of course, she didnt bounce back.
The same thing happened with my MIL (I wasnt her main carer) and eventually I didnt believe it when I was told it would be her final days. Even in her final few hours I somehow expected her to recover.

I think that not wanting to extend her life and keeping her out of hospital is a very kind thing to do.

 

[Scouts girl]

No one can ever be prepared for the rollercoaster that dementia brings to us and the heartbreaking emotions that we experience during our journey and final end. I thought I would be prepared when my lovely mum passed away at the end of November last year as I had spent the last year just sitting with her in her care home watching her deteriorate week by week, then day by day. I wished deep down that she would pass away peacefully and end the awful struggle that she was enduring in the last few weeks of her life when she stopped eating and drinking. I told her that we all loved her and that she could now go and not worry. However, when she did finally pass away, I just felt so numb and lost. Then came the guilt and inconsolable heartbreak that I would never see her again. I know deep down, she is now at peace and free from this awful illness but nothing can prepare us for the end and we can only hope that it will be peaceful and pain free. I wish you all strength who are going through the end of life journey with this heartbreaking illness. Let the tears flow and be with them as often as you can.

 

[Smrtber]

Going through very similar scenario with Mum at moment. She has been in a care home since June last year and has been steadily declining. She was moved to the EMI unit in November as she was starting to shout a lot. Last week she was admitted to hospital with a suspected DVT. This was ruled out the day after. Since then she has just been lying in bed, barely eating or drinking and as confused as normal. She is not being treated for anything medical and should be ready for discharge but I have been told she has to have a needs assessment. This is just dragging on. It could be that the care home won’t be able to meet her needs any more and she may have to be placed in a nursing home.
Sorry Pitufi that I can’t give advice to your thread but I find the replies from others helpful.
We just want the best for our loved ones and hope that they spend what time they have left in peace and dignity but unfortunately it doesn’t seem to be like that and that is what I find most upsetting.

 

[pitufi]

Thank you all for your kind replies and stories, so sad to read but comforting to know how you all got or are getting through it.

Having read others stories over the last year or so I realise there could be highs and lows in store and not just a steady decline. She’s always been strong as an ox health wise. But for her sake I hope she is able to let go peacefully in her sleep.
All these thoughts about cremation when it all happens, a service, where to scatter her ashes are swirling in my head, but I realise it’s only cos I’m just trying to fill my mind with anything other than feelings. As soon as I pause tears just flood out.

 

[malengwa]

Pitufi let the tears flow don't hold them in. I did so much crying as mum declined I thought I'd be all cried out when mum died but no I can cry for England.
I don't think we can always be ready, mum went downhill so quickly. This time last year she was still able to go out on her own and had no carers in. Try to hang onto shared memories, in the end it was we talked about and what I now wallow in.
I wish you strength at this time it is truly tough but somehow we all seem to keep going, it's what we do isn't it?

 

[pitufi]

From what I’ve read over the years here on talking Point I half expected my mum’s remaining time with us to go up and down.

The last two weeks she’s been holding on, she even allowed the carers to dress her and I saw her out of her room walking. Very thin and frail but walking, todays visit was the nicest yet, she kissed her baby granddaughter a lot, cooed at her and when we walked up to her upon our arrival she was holding a half eaten jam sandwich. I couldn’t believe it!

Her general downturn from the short time she’s been at the care Home is still visible however and I don’t really know what to expect. Even the nurse mentioned a month ago how quickly she’s deteriorating. Her GP and I had a chat and he agreed that prolonging her time with us would only bring more sorrow. So while she is here she is happy but when her body says it’s time to let go then so be it, no interventions.

Today was genuinely the first time in almost a year where when I hugged her it felt like the real her, before Alzheimer’s. Her hug felt in the moment, it felt warm and loving, and heartfelt. Barely a few weeks ago she couldn’t really grasp how to hug me back and limply kept her arms down not knowing what I was saying

 

[canary]

Today was genuinely the first time in almost a year where when I hugged her it felt like the real her, before Alzheimer’s. Her hug felt in the moment, it felt warm and loving, and heartfelt. Barely a few weeks ago she couldn’t really grasp how to hug me back and limply kept her arms down not knowing what I was saying

Treasure moments like these.
Mum was up and down in her final year - it was a real rollercoaster ride. Dementia is so unpredictable.