How long?

[Daughter of Angie]

Hello all, this is my first post here and firstly I want to send love to everyone living in this relentless, all consuming, soul crushing limbo.

I have been loosing my mum repeatedly over the past 2 years, she is 63 and has Lewy body dementia - the decline has been so rapid and yet has felt, at some points - so painfully slow as I’m sure many can relate to.

She is currently living in a care home (after I was no longer able to care for her safely at home, opening the can of worms of that guilt can be saved for another day!) She can’t walk, talk, is fully incontinent and is now struggling to swallow. At what point are we able (with a DNR in place) to make this end? Do we have to wait until she has wasted away even more? Is there anyway to expedite the inevitable and save her from further indignity and us from further trauma? When there is no hope why do we have to prolong this so called “life”?

I am sure many here have felt the same and wondered if anyone had any experience or advice on how to help speed up the process with the authorities and allow all of us to finally be at peace?

Thank you for your support and I return it wholeheartedly and hope everyone here is finally allowed to grieve the loss they have been dealing with from the moment their loved one was taken away by this cruel and inhumane disease.

Sending love x

 

[Spottydog1]

Hello all, this is my first post here and firstly I want to send love to everyone living in this relentless, all consuming, soul crushing limbo.

I have been loosing my mum repeatedly over the past 2 years, she is 63 and has Lewy body dementia - the decline has been so rapid and yet has felt, at some points - so painfully slow as I’m sure many can relate to.

She is currently living in a care home (after I was no longer able to care for her safely at home, opening the can of worms of that guilt can be saved for another day!) She can’t walk, talk, is fully incontinent and is now struggling to swallow. At what point are we able (with a DNR in place) to make this end? Do we have to wait until she has wasted away even more? Is there anyway to expedite the inevitable and save her from further indignity and us from further trauma? When there is no hope why do we have to prolong this so called “life”?

I am sure many here have felt the same and wondered if anyone had any experience or advice on how to help speed up the process with the authorities and allow all of us to finally be at peace?

Thank you for your support and I return it wholeheartedly and hope everyone here is finally allowed to grieve the loss they have been dealing with from the moment their loved one was taken away by this cruel and inhumane disease.

Sending love x

 

[Spottydog1]

Hello I fully agree with every thing you say,the nightmare just goes on. Be strong,and I hope all are at peace soon. Sending big hugs.

 

[canary]

Hello @Daughter of Angie

Im sorry to hear about your mum, this final stage is a real emotional roller coaster
Im afraid you cannot expediate the end, but what you can do is talk to the GP about withholding treatment and not taking her to hospital

 

[Gentle]

I cried all the way home from seeing my mum today. I think she is at a similar stage to yours. It is inhumane what our society does to good people in the name of 'kindness'. It is tearingcme apart, and you too I'm sure. Biggest hugs for everyone going through this.

 

[Gosling]

Hello @Daughter of Angie and firstly welcome to this friendly and supportive forum. I am glad you have made your first post on here, but so feel for you at the stage where your dear Mum is now.
As others have said, there is no way of expediting the end - it is a huge rollercoaster - just be with her hold her hand , tell her how much you love her (they say hearing is the last to go). It is heartbreaking for sure -I had the same with my Mum - and there is never any knowing how long 'end of life' can go on for. This doesn't help you seeing her deteriorate in front of your eyes, but I send you a virtual hug, and say be strong, and hope that your dear Mum will be at peace very soon.

 

[luggy]

Hello @Daughter of Angie I am so sorry that you and your mum are experiencing this. Many of us are in the same boat. My mum is in a very bad way too and has no quality of life. She eats so very little and yet the GP and care home insist that she is pumped full of nutritional supplements every day which, in my view, are not prolonging life, but prolonging death. As mum's LPOA, I have had an ongoing battle to try and get the supplements withdrawn, but I'm over-ruled each time. I'm afraid that it seems to be accepted practice that until the swallow function ceases to physically operate, ONS will continue to be administered.

It is really harrowing watching our loved ones slowly deteriorate, but we have to accept that there is nothing we can do except hope that those who are caring for them are keeping them as comfortable as possible.

I hope that your mum is as comfortable as she can be and that the end, when it comes, will be quick and peaceful. ((((()))))

 

[MowgliGirl02]

@Daughter of Angie I’m so incredibly sorry about what you are going through. ❤️
I lost my mother on Mother’s Day (10th March) I was beside her every day of her rapid decline, she couldn’t swallow so no eating or drinking, couldn’t talk, was bed bound, fully incontinent, and towards then end not even conscious.
So I know exactly how you feel when you say about making it end. I wanted it to end for my beautiful mum’s sake, so she wasn't suffering anymore.
But unfortunately there isn’t anything you can do. You have to let it take it’s course. Just give her love and support as best you can. Trust in the people looking after her, and most importantly look after yourself.
Dementia is a cruel disease for not just the person suffering from it.
Its not nice, and it’s something I will never forget, but remember you are not alone. ❤️

 

[Scoobie808]

Hello all, this is my first post here and firstly I want to send love to everyone living in this relentless, all consuming, soul crushing limbo.

I have been loosing my mum repeatedly over the past 2 years, she is 63 and has Lewy body dementia - the decline has been so rapid and yet has felt, at some points - so painfully slow as I’m sure many can relate to.

She is currently living in a care home (after I was no longer able to care for her safely at home, opening the can of worms of that guilt can be saved for another day!) She can’t walk, talk, is fully incontinent and is now struggling to swallow. At what point are we able (with a DNR in place) to make this end? Do we have to wait until she has wasted away even more? Is there anyway to expedite the inevitable and save her from further indignity and us from further trauma? When there is no hope why do we have to prolong this so called “life”?

I am sure many here have felt the same and wondered if anyone had any experience or advice on how to help speed up the process with the authorities and allow all of us to finally be at peace?

Thank you for your support and I return it wholeheartedly and hope everyone here is finally allowed to grieve the loss they have been dealing with from the moment their loved one was taken away by this cruel and inhumane disease.

Sending love x

Hi, I'm in exactly the same boat with my mum at the moment. She's 76 and the decline has been astonishing in the last 18 months. She's struggling to swallow and only says the occasional yes or no. She's no longer able to take her medication and has no quality of life. The weight loss blows my mind, she was a size 22 a year ago and is now less than 7 stone, she's almost skeletal. Her care home asked me to go in last night as they'd called an ambulance for her very shallow breathing and she was unresponsive. The paramedics could do nothing to help her and we're very honest that if she were to go to hospital then she would be sat in a trolley for hours. She has a stage 4 pressure sore on her back which is down to bone so moving her from the home to hospital would cause her a lot of pain. I feel so helpless, I can't improve anything for her. I'm just watching her slowly die, I whispered in her ear to let go and be at peace. It breaks my heart x

 

[canary]

Im so sorry @Scoobie808

Watching someone die from dementia is harrowing. It is neither quick nor pretty
I think, though, that she is near the end as her breathing has changed
It will be over soon
((((((((((((((((((((((((((((((hugs)))))))))))))))))))))

 

[Scoobie808]

@canary her breathing has been all over the place for the last week. She had an increased respiratory rate last weekend and then last night it was very shallow with the occasional very deep breath, i honestly thought she'd gone when i walked in to her room (the paramedic said the same) I've spoken to the care home this morning and apparently she's downed a bowl of porridge!

 

[canary]

Oh my goodness @Scoobie808
She has rallied. It does happen quite often, but not usually so late in day.
This last stage is a terrible emotional roller coaster
xx

 

[backin]

So many of us in the same boat. It's so sad.

 

[Darth Sideous]

It is so sad. I am in the same place with my mum. Take care of yourself.

 

[isabelle8178]

I am so sorry. I am going through the same thing. My mom is non verbal and losing weight and bed ridden. She can’t do anything. It seems like forever like a limbo. I agree. I am sending support as you are not alone. My mom has frontotemporal dementia. It is going on 8 years with the last two years the worst.

 

[SeaSwallow]

Hello @Darth Sideous i am so sorry that you are going through this, it is so hard to watch.

Hello @isabelle8178 and welcome to the Dementia Support Forum. I hope that you find being a member of the forum supportive as our members really do understand just how hard it can be caring for a loved one with dementia.

Wishing you both strength for the days and weeks ahead.

 

[Woody54321]

Going through the same thing, have realised after reading through this forum that its a long process and no one really knows when the end will come, such a cruel process which no one deserves to go through but such is life. Big hugs all round to everyone here.

 

[DawnR]

It breaks my heart to read about everyone going through this, a huge hug to you all 🤗

 

[Sigricb]

Hello all, this is my first post here and firstly I want to send love to everyone living in this relentless, all consuming, soul crushing limbo.

I have been loosing my mum repeatedly over the past 2 years, she is 63 and has Lewy body dementia - the decline has been so rapid and yet has felt, at some points - so painfully slow as I’m sure many can relate to.

She is currently living in a care home (after I was no longer able to care for her safely at home, opening the can of worms of that guilt can be saved for another day!) She can’t walk, talk, is fully incontinent and is now struggling to swallow. At what point are we able (with a DNR in place) to make this end? Do we have to wait until she has wasted away even more? Is there anyway to expedite the inevitable and save her from further indignity and us from further trauma? When there is no hope why do we have to prolong this so called “life”?

I am sure many here have felt the same and wondered if anyone had any experience or advice on how to help speed up the process with the authorities and allow all of us to finally be at peace?

Thank you for your support and I return it wholeheartedly and hope everyone here is finally allowed to grieve the loss they have been dealing with from the moment their loved one was taken away by this cruel and inhumane disease.

Sending love x

Sadly we can't give them a dignified and peaceful end to what is an inevitable path its not allowed anymore. As an ex nurse I just wish we could still give people TLC which included strong pain relief to help them on their way kinder for the person and less harrowing for the families. They call it progress and safeguarding the individual I call it big business!!

 

[Daughter of Angie]

I just wanted to thank you all for replying to me, and apologise for not replying sooner to all of your kind words of support and love, it really does help. I have been struggling to be strong lately and can’t bring myself to visit my mum as it feels like all of these new memories of her are making the old ones fade even further away. I just want to hear her voice again and not the strange wooing I hear when I visit.

Sending love and support to everyone here and thank you again ❤️