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I so hope this is the end (dying)

346 replies

Soupsetscared · 10/06/2023 18:14

Mum broke her hip on Monday, had an operation on Tuesday.
She has been suffering with dementia for a number of years.
Lives in a residential home. She does have a DNAR in place.
Went to see her Wednesday and she is just curled up sleeping alot.
Same Thursday and Friday. The only thing she has eaten is a spoon
of porridge. One small sip of water. Ripped the canulla out herself.
Now is refusing all food and drink.
Yesterday the only words she said was to call me 'evil and a fING bith.
Today she hasn't eaten or drunk anything.
Hospital say it's not at the end yet. Will call me when it's nearly time, so I can
ring my brother and aunt.
I have never heard mum swear. I'm her only daughter and upset that she
thinks that about me.
Am I evil hoping it is the end. She has no life can't remember any of her family
and friends. Forgotten she was ever married.
This was someone who was the first on the dancefloor and last to get off.
Enter a beauty contest before marriage and won.
PA to the CEO of a top company.
Loved everyone and anyone.

OP posts:
Mariposista · 28/07/2023 19:05

This must be absolutely torturous OP. I lost my beloved gran 3 months ago. She didn't have dementia but heart disease took all her faculties in her last stretch. Horrible to watch. Like your mum, she was beautiful, clever, articulate (sometimes downright bossy!), always well-groomed and clean. It broke my heart to see her as she was.
God bless you and your dear mum.

Lookitaahhh · 28/07/2023 19:12

Hi op, just wanted to say that I understand-dementia really is unbearably cruel and I totally get how you feel. Sending kind thoughts your way 💐

SpringSummerDreamer · 28/07/2023 19:53

Thank you for sharing your journey with your lovely Mum. On the same path with mine, but not as far along. I try hard not to go down the 'dementia is so terrible' route in my head as it feels so dreadful and thinking like that ends all hope and terrifies me!

I just concentrate on what I can do practically day by day. I don't look at my Mum and think she's not her real self, just that this is a new stage in her life - she's very vulnerable now, sometimes emotional, sometimes snappy or anxious, often increasingly detached and tired. But as I say, not so far along - five years post diagnosis, so I don't know quite how bad it's going to get.

The only experience I can give is with the food. I was once in hospital for a week, after which the infection cleared up, but I was left with 'loss of appetite'. It really was impossible to contemplate any food and the hospital took it very seriously and kept me in until I could eat normally again. So I can sympathise with my mum and yours a bit - if your appetite has disengaged, you simply can't physically bring yourself to eat.

If all she'll eat is a few spoons of porridge and Fortisip style milkshake drinks, it may be enough for now - my Mum regained lots of weight on them. You can also get fortified fruit juices and a few other things from the same brand. I've also seen jelly sweets that help hydrate dementia patients and my mum will try very small easy to eat sweets like white chocolate buttons, milky way stars etc. I think these tiny snacks help as nobody says they must be eaten here and now - nothing for the dementia obstinate streak to flare up against!

Thanks again for your updates, I'm sure they've helped a lot of people..

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SnapPop · 28/07/2023 20:24

Sending strength to you OP.

Soupsetscared · 28/07/2023 22:00

I'm sorry that others are going through this process with their
love ones. My thoughts are with each and everyone of you.
We know others are going through this but at the time you think
it's only you.

Yesterday we had a continuing health care assessment.
She only qualifies for nursing care. I must admit that this
new home which is a NURSING home are caring for her so very well.
On Tuesday they had a singer in and mum knew all the words to old songs.
It's hard to believe that she couldn't get up and dance.

Love to you all xx

OP posts:
Treesinmygarden · 28/07/2023 23:17

Soupsetscared · 28/07/2023 22:00

I'm sorry that others are going through this process with their
love ones. My thoughts are with each and everyone of you.
We know others are going through this but at the time you think
it's only you.

Yesterday we had a continuing health care assessment.
She only qualifies for nursing care. I must admit that this
new home which is a NURSING home are caring for her so very well.
On Tuesday they had a singer in and mum knew all the words to old songs.
It's hard to believe that she couldn't get up and dance.

Love to you all xx

I've just come across your post. What you are going through must be hell on earth. I used to always think that dementia would be the worst ever thing that could befall my parents, and maybe it still is - I don't know.

My lovely mum was diagnosed with cancer of the gall bladder just over 17 years ago. It was totally unexpected and extremely badly handled by the NHS. Nine days after her diagnosis, my dad passed away suddenly in his sleep. Maybe the stress of my mum's illness was too much. They literally lived for each other.

So, just over 5 months after mum's diagnosis, she died too. She was 62.

Ever since, I have never been able to figure out whether it's 'better' if they are just 'gone' or whether their physical presence with potentially a few lucid moments would be preferable?

Soupsetscared · 11/08/2023 22:12

Another non update.
Mum is now less than 5st is serviving on smoothies.
She is very gaunt sunken cheeks.
Last week she was quite lucid and at one point called me by name.
2 seconds later she had gone back to sleeping.
Today her first and only words I could either hear or understand was ' what are you doing here'.
Is still very stubborn wouldn't let the nurses get her out of bed.
I held the smoothie to her mouth and she battered it away.
I've stopped going as much as I come away crying and feel depressed and frustrated.
But the guilt is also eating me up. (Wrong choice of words as she has not eaten properly for a long time.) I pray we will get a phone call to get there asap.
This is a cruel cruel end of life.

OP posts:
vipersnest1 · 11/08/2023 22:21

Oh, @Soupsetscared, I'm so sorry for you.
No-one could possibly judge you as harshly as you are judging yourself. Please don't feel guilty.
Do what you can, when you can, but remember that you still need to be able to function, so that means taking care of yourself. Flowers

PermanentTemporary · 11/08/2023 22:32

I am so sorry you are on this very dark path for such an unbearable length of time.

If there is anything that brings you comfort, I hope you can reach out for it. She is being cared for, it sounds as if she is asleep most of the time. These endless weeks will seem shorter once they are in your past, and she is probably not aware of much. We are thinking of you x

ChardonnaysBeastlyCat · 11/08/2023 22:46

This is heartbreaking OP.

I wish you find some light in this bleak moments.

Soupsetscared · 11/08/2023 22:59

One of the nurses said today that as mum is having these smoothies she could last for months, as they have to feed her.
Why the law can't be changed to stop this indignity.
Her bones are just covered with skin, there is not a bit of fat anywhere.
Size 8 nighty drowns her. Fortunately I was able to get her rings off so they are not lost. Mums hair was unlike mine very thick and curly, now it's straight and thin.

Thank you for your support. My family are helping me get through this process.
Our children and grandchildren won't go to see her as they prefer to remember her as she was and not is now. I don't blame them.
So the only visitors she has is my brother and his wife, mums sister and me and my husband. But she doesn't know any of us. Reading the signing in book I don't think any of the residents get many visitors. As most like mum are mostly asleep.

Can't fault the staff they are all lovely and friendly. Mum is always clean and as tidy as can be. They are all angels in disguise. I couldn't do their job for all the tea in China.

OP posts:
MyCatIsAFuckwit · 11/08/2023 23:07

@Soupsetscared
I'm so sorry you are walking this path, it is truly excruciating. I have been there too.

My mother after 18 months in a care home and 18 months of in home care started to decline at Christmas just gone. She passed away early March.

Be prepared that it can take 3 weeks of being nil by mouth (including water) for the body to give in.
My mum was roughly 11 days, it was unbelievable.
Like you I wished it to be over. This is not a selfish wish....just a humane one.

The end will be peaceful and dignified.
End of Life Care agreement will make it so (you will not see this right now as you won't know what to expect)
The care home, nurses and GP will know exactly what to put in place for both your mum and next of kin.

Sending you massive love OP ❤
Please feel free to message me if you need at this incredibly hard time. xx

Zonder · 11/08/2023 23:18

What a horrible time for all of you. Thinking of you.

vipersnest1 · 11/08/2023 23:26

@MyCatIsAFuckwit, what a lovely and helpful post. I'm sorry that you had to go through it too.
Just in case anyone is wondering, I lost my DM in January, so have some expos what OP is going through.

vipersnest1 · 11/08/2023 23:26

Arrgh! 'some idea'....

MyCatIsAFuckwit · 11/08/2023 23:44

@vipersnest1
Thank you ❤🙏

So sorry for your loss, it's so hard.
In this day and age we are totally unprepared.

I'm only 45 and lost both my parents within 18 months (mid 80's and had (mostly good happy lives )

In a world where everything up for discussion...death is not, especially in the West.
If it could be more open and discussed it would be such a benefit x

AcrossthePond55 · 12/08/2023 00:06

@Soupsetscared

Yes, it is SO unfair that these life prolonging measure are taken when the quality of life is just gone.

I think perhaps your mum is refusing to eat as her way of 'easing herself out' of life. Even with advanced dementia we believe that's why our mum refused to eat or drink much but a few sips of water. That something within her knew it was 'time' and that she wanted to go. I hope that makes sense. Luckily all we had to do is sign papers saying 'in legal terms' that she was to be made comfortable with meds and sips of water, but if she didn't want to eat or drink she was to be left alone.

In the end it was Covid that actually caused her death, within 48 hours of testing positive. But we felt she was 'already on the journey' and that Covid only hastened the inevitable.

Prayers for peace for you and your family and a swift release for your mum.

Bonfire23 · 12/08/2023 00:56

AcrossthePond55 · 12/08/2023 00:06

@Soupsetscared

Yes, it is SO unfair that these life prolonging measure are taken when the quality of life is just gone.

I think perhaps your mum is refusing to eat as her way of 'easing herself out' of life. Even with advanced dementia we believe that's why our mum refused to eat or drink much but a few sips of water. That something within her knew it was 'time' and that she wanted to go. I hope that makes sense. Luckily all we had to do is sign papers saying 'in legal terms' that she was to be made comfortable with meds and sips of water, but if she didn't want to eat or drink she was to be left alone.

In the end it was Covid that actually caused her death, within 48 hours of testing positive. But we felt she was 'already on the journey' and that Covid only hastened the inevitable.

Prayers for peace for you and your family and a swift release for your mum.

My mum was the same, refused to eat as it was the only thing she could control I think
Then a chest infection went to pneumonia and she died from sepsis secondary to early onset dementia

AcrossthePond55 · 12/08/2023 14:42

Bonfire23 · 12/08/2023 00:56

My mum was the same, refused to eat as it was the only thing she could control I think
Then a chest infection went to pneumonia and she died from sepsis secondary to early onset dementia

It's so unfair, isn't it? That in so many places, people who have lived their lives 'to completion' and are so ready to go, or those who have nothing left to look forward to except pain, humiliating 'personal care' and a slow degeneration (my dad had a degenerative neuro condition), are not given the freedom to choose a better death. And that the families of those so far gone in dementia have no right to make a decision, based on love for and knowledge of their relative, to stop treatment.

DH and I are lucky in that we live in a state in which assisted suicide is legal. The caveat is that the person must be suffering from a terminal and unalterable condition and 'compos mentis' at the time suicide is contemplated. There is no 'advance directive' for requesting assisted death in the case of dementia. We're also lucky in that families can request withdrawal of treatment for a loved one when it's obvious that treatment will do no good.

Death is a part of life.

Soupsetscared · 01/09/2023 14:34

Today's lesson on mum NOT dying. I am now writing this as it will remind me of what we are going through. I don't expect any replies as what can anyone say.

Unfortunately I haven't seen her for a couple of weeks as I've had covid.
Is having a few fruit smoothies but can't always remember how to suck
from the straw.
Carer asked her what she wanted for lunch. Gammon or fish mum didn't know what they were. I was told that even though she won't eat anything they try and put some food in front of her. In the hope that she will try. If anyone tries to feed her she gets grumpy/aggressive as I found when trying to get her to have a piece of toast.
She is holding her weight at 30kg.
Today she was seeing people that were not there. Talking about her childhood friends and wondered if she would see them soon.

One of the carers had painted her nails and mums response was she looked like a tart just like her daughter and said my name. Hairdresser had styled her hair and mum thinks she is going in a beauty contest. She did win one in her teenage years.

If we don't laugh we will cry.

OP posts:
OnTheTuftedWilton · 01/09/2023 14:45

It is so difficult. You have my sympathies, fully get the laugh or you will cry. I hope you get the outcome you want soon.

Hellno45 · 01/09/2023 15:36

Soupsetscared · 01/09/2023 14:34

Today's lesson on mum NOT dying. I am now writing this as it will remind me of what we are going through. I don't expect any replies as what can anyone say.

Unfortunately I haven't seen her for a couple of weeks as I've had covid.
Is having a few fruit smoothies but can't always remember how to suck
from the straw.
Carer asked her what she wanted for lunch. Gammon or fish mum didn't know what they were. I was told that even though she won't eat anything they try and put some food in front of her. In the hope that she will try. If anyone tries to feed her she gets grumpy/aggressive as I found when trying to get her to have a piece of toast.
She is holding her weight at 30kg.
Today she was seeing people that were not there. Talking about her childhood friends and wondered if she would see them soon.

One of the carers had painted her nails and mums response was she looked like a tart just like her daughter and said my name. Hairdresser had styled her hair and mum thinks she is going in a beauty contest. She did win one in her teenage years.

If we don't laugh we will cry.

It's so hard. I wouldn't wish it on my worst enemy.

How are you feeling @Soupsetscared ?

Soupsetscared · 01/09/2023 17:56

@Hellno45
Thank you for asking me, I feel numb somedays other times I dream it's over.
We as a family have decided to only go once a week each so she gets 4 visitors a week until we are told its near the end. Mum is well cared for.
Other people might think we are awful. But it's what is best for us.

OP posts:
Hellno45 · 01/09/2023 18:19

Soupsetscared · 01/09/2023 17:56

@Hellno45
Thank you for asking me, I feel numb somedays other times I dream it's over.
We as a family have decided to only go once a week each so she gets 4 visitors a week until we are told its near the end. Mum is well cared for.
Other people might think we are awful. But it's what is best for us.

I'm sorry. It's just so traumatic to watch and to live with. Don't worry about what other people think. I think your mum is lucky that she has such a dedicated family. One visit each a week is great. It means you're all sharing the load and get some down time.

GETTINGLIKEMYMOTHER · 01/09/2023 19:05

Sympathies, OP, I hope your mother will drift away peacefully soon.
I was only relieved when my DM finally died - she was 97 and had had dementia for some 15 years, doubly incontinent for at least the last 4 or so, not knowing any of her family,,unable to hold any sort of conversation.

Who on earth would wish for anyone to go on like that? My DM’s former self would have been the first to say, ‘For heaven’s sake, just let me go.’

Re the not eating and drinking, BTW, it was a doctor who once said, ‘They are not dying because they’re not eating and drinking. They are not eating and drinking because they’re dying.’