Still here..and getting weaker

Baby Bunty

Registered User
Jan 24, 2018
297
0
Hi all its been a while since last post..cut long story short..mum end stage and was deemed end life 8 weeks ago! Priest been out.all medication inplace and D/N fully on board..mums also been granted CHC funding which is bitter sweet!..to say its been an horrific time is an understatement. Days off sleeping constanstly.not eating ..them mum will be alert for an hour or so eating and its back to sleeping!..feel like i am at breaking point..as my heart is literally breaking .i want and love my mum so so much but this is heartbreaking..i have struggled for months with anticipation grief were i cried constantly!..now i feel like i have put my hands up and said dementia you have won!!..i have fought dementia tooth and nail..now i havent got the fight in me!!..but then i feel like i have let mum down!.i hate how vulnerable she looks..how fragile..how sad she looks..pain is controlled if and when she needs it!..my whole family lifes as been on hold for months!.holidays all cancelled..and yet my poor little mum is still here!!! She weights next to nothing!!..i want to SHOUT and SCREAM ..how dare you dementia do this to my beautiful mum
 

Baby Bunty

Registered User
Jan 24, 2018
297
0
I know no can tell how long it will be..but this is horrific for myself and all brothers and sister ..we all feel helpless.xx any guidance will be much appreciated. Xx
 
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Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
I'm so sorry to read of your situation @Baby Bunty, It must be incredibly hard for all of you.

There's no way you have let your mum down and I'm with you in wanting to shout and scream at dementia.

I wondered if it would help to talk with someone on the helpline tomorrow. The number is

0300 222 11 22.

They will be open from 9am to 8pm tomorrow. These are the hours -

Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

If you haven't already seen your own GP I think it might be a good idea to do so. Your own health must really be suffering. If you'd like to talk to someone tonight the Samaritans have an emotional listening service which is 24/7 - you could give them a ring. This is the number and the link -

116 123

https://www.samaritans.org/how-we-can-help-you/contact-us
 

Hazara8

Registered User
Apr 6, 2015
697
0
Sorry its in right place now..i know no can tell how long it will be..but this is horrific for myself and all brothers and sister ..we all feel helpless.xx any guidance will be much appreciated. Xx


This is that 'no man's land' which is made all the harder when you are subject to the uncertainty, the vulnerability manifest in the frailty and aspect of a loved one who has lived with and borne a dementia for so long a time. And you know that there is nothing that you can do to change any of it. All the tears and heartache are not something which dementia acknowledges nor cares about and however loud that scream of anguish, it will still fall on deaf ears. And so you let that dementia be. For it is as alien as a distant unknown star and whilst it plays havoc within the mind of a loved one and sets its own agenda in terms of 'behaviour', in presentation and in determining an eventual outcome, it is NOT the loved one whom it inhabits. It cannot be. So if one can possibly not give that dementia any credence by way of anguish, anger or despair, instead focus entirely on the actual living person, the loved one, and see the 'beauty' of that loved one for what they truly are, however compromised by this disease, then you might then discover just how powerful such a realisation can be.


It is not that one accepts what dementia has done, nor do you deny it. But to fight something alien with something known - emotion, anger, anxiety, hope, expectation and so on - sucks the very life spirit out of you, whilst having no effect whatsoever on the progress of a disease which always wins and cares nothing for you nor your welfare.

The greater thing , by far, is in bringing one's humanity to bear upon the reality which is there before you. A mother whom one has known from one's childhood, long before that alien intruder came into her life. The laughter and the tears which will have been shed during that life, all the colour and adventure of a life, the 'friendship' which is precious in any parent and the whole of life's pattern which is unique to everyone - all of this and so much more, which is a life lived and which can never ever be undone, now laying before you, in this present moment, inanimate, frail, perhaps in sleep. But still that very person in essence, remains there with you. It is that 'something' which cannot be held, shown, nor captured and it is very very special. And it is removed from the dementia entirely. And when I took hold of my own mother's hand and held it until she gave out her final breath, that 'something' was there. Her dementia was dead and gone, but in the holding of her hand, the real person lived on, in the heart's mind and above all, in the love - which is within each and every one of us - for ever.
 

Baby Bunty

Registered User
Jan 24, 2018
297
0
I have managed this for well over 6 months..even though i cry constanly i now why i am..but i feel a little calmer for past 4 weeks ( lost Mil..to copd ) which was a complete shock so then i had to concentrate on my husband and daughter and father inlaw and put they feeling to my proity!!..i grieved for mother in law and put my feelings for 4 weeks aside about mum....but know its hit me hard agian in the face!..feel like its role reversal..i am mums baby..
 

Baby Bunty

Registered User
Jan 24, 2018
297
0
Oh what beautiful words..so so true ..thankyou thankyou..i just cant bear seeing her like this its literally killing me..i am a nurse..my life role is to make people promote dignity!!..promote well being..and if and when..promote dignity in death..yet i feel this is so so prolonged it tearing away at me..not just me my whole family..x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
When you are nursing someone professionally it is never the same as when a relative is involved because of the emotional attachment. Also, nursing someone with dementia is very, very different from nursing someone with an infection, or cancer.
Dont blame yourself
xx
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
I am still of the opinion that unless someone has been close to someone who has dementia then they do not know or understand what you go through. Most people think it is about memory loss & are unaware of what PWD go through & how awful it is for the families. And you have also had to be there for your husband with losing his mum recently which must be doubly hard. Please have time for you xx
 

Baby Bunty

Registered User
Jan 24, 2018
297
0
Thankyou for you time ..i understand its different..and i would never ever want anyone to go thought this..as saying i wont want any to walk in my shoes!!..this forum as been a god send to me and i truely mean that..as unless is walking in your shoes no one understands!..i just feel sad and lonely..i want and crave my mums hugs.xxx
 

JBK

Registered User
Feb 25, 2018
47
0
This is that 'no man's land' which is made all the harder when you are subject to the uncertainty, the vulnerability manifest in the frailty and aspect of a loved one who has lived with and borne a dementia for so long a time. And you know that there is nothing that you can do to change any of it. All the tears and heartache are not something which dementia acknowledges nor cares about and however loud that scream of anguish, it will still fall on deaf ears. And so you let that dementia be. For it is as alien as a distant unknown star and whilst it plays havoc within the mind of a loved one and sets its own agenda in terms of 'behaviour', in presentation and in determining an eventual outcome, it is NOT the loved one whom it inhabits. It cannot be. So if one can possibly not give that dementia any credence by way of anguish, anger or despair, instead focus entirely on the actual living person, the loved one, and see the 'beauty' of that loved one for what they truly are, however compromised by this disease, then you might then discover just how powerful such a realisation can be.


It is not that one accepts what dementia has done, nor do you deny it. But to fight something alien with something known - emotion, anger, anxiety, hope, expectation and so on - sucks the very life spirit out of you, whilst having no effect whatsoever on the progress of a disease which always wins and cares nothing for you nor your welfare.

The greater thing , by far, is in bringing one's humanity to bear upon the reality which is there before you. A mother whom one has known from one's childhood, long before that alien intruder came into her life. The laughter and the tears which will have been shed during that life, all the colour and adventure of a life, the 'friendship' which is precious in any parent and the whole of life's pattern which is unique to everyone - all of this and so much more, which is a life lived and which can never ever be undone, now laying before you, in this present moment, inanimate, frail, perhaps in sleep. But still that very person in essence, remains there with you. It is that 'something' which cannot be held, shown, nor captured and it is very very special. And it is removed from the dementia entirely. And when I took hold of my own mother's hand and held it until she gave out her final breath, that 'something' was there. Her dementia was dead and gone, but in the holding of her hand, the real person lived on, in the heart's mind and above all, in the love - which is within each and every one of us - for ever.
Thank you Hazara. So beautifully put. I'm really trying not to acknowledge this alien intruder which has joined our lives. I'm not finding it easy though & sometimes have a good rant & try to drive it out of our home, but I know it's futile. My dear Husband has lived a simple, caring (always thinking of others rather than himself) life, so why has this demon chosen him?
 

Baby Bunty

Registered User
Jan 24, 2018
297
0
Sister was with mum today ..bless her she was snug and comfortable and also ate a little..i cant go till Wednesday..daughter is off school and planning to take her out..i am so looking fowards to seeing my mum..i love holding her and and telling her i love her.xxx
 

bdmid

Registered User
Dec 4, 2013
36
0
73
Bristol
This is that 'no man's land' which is made all the harder when you are subject to the uncertainty, the vulnerability manifest in the frailty and aspect of a loved one who has lived with and borne a dementia for so long a time. And you know that there is nothing that you can do to change any of it. All the tears and heartache are not something which dementia acknowledges nor cares about and however loud that scream of anguish, it will still fall on deaf ears. And so you let that dementia be. For it is as alien as a distant unknown star and whilst it plays havoc within the mind of a loved one and sets its own agenda in terms of 'behaviour', in presentation and in determining an eventual outcome, it is NOT the loved one whom it inhabits. It cannot be. So if one can possibly not give that dementia any credence by way of anguish, anger or despair, instead focus entirely on the actual living person, the loved one, and see the 'beauty' of that loved one for what they truly are, however compromised by this disease, then you might then discover just how powerful such a realisation can be.


It is not that one accepts what dementia has done, nor do you deny it. But to fight something alien with something known - emotion, anger, anxiety, hope, expectation and so on - sucks the very life spirit out of you, whilst having no effect whatsoever on the progress of a disease which always wins and cares nothing for you nor your welfare.

The greater thing , by far, is in bringing one's humanity to bear upon the reality which is there before you. A mother whom one has known from one's childhood, long before that alien intruder came into her life. The laughter and the tears which will have been shed during that life, all the colour and adventure of a life, the 'friendship' which is precious in any parent and the whole of life's pattern which is unique to everyone - all of this and so much more, which is a life lived and which can never ever be undone, now laying before you, in this present moment, inanimate, frail, perhaps in sleep. But still that very person in essence, remains there with you. It is that 'something' which cannot be held, shown, nor captured and it is very very special. And it is removed from the dementia entirely. And when I took hold of my own mother's hand and held it until she gave out her final breath, that 'something' was there. Her dementia was dead and gone, but in the holding of her hand, the real person lived on, in the heart's mind and above all, in the love - which is within each and every one of us - for ever.

So so beautifully put, I’m sure everyone who’s had the misfortune to be involved with this heartbreaking disease will find some solace in these words. We’re 7years in with mum who’s also declining rapidly now. You have captured it so well. Thank you xx