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Feel like I’m falling apart

Deb6901

New member
Feb 19, 2020
1
Hi all .
my mum was diagnosed with Alzheimer’s only a week ago and I can’t get to grips with it. She’s had an awful memory for years but still functioned normally still drives her car ect ect.
my big issue is I’m a carer, a community carer and I specialise in end of life care, I have spent over 20 years dealing with this subject, for clients and families and now I’m a wreck.....
Just when I’m needed I’m terrified I’m scared I’m angry I’m just so sad, I get this is normal and like many I have read in hear my guilt is massive as I’m a crying wreck!!
I’m not sleeping because if bad dreams, I find I’m driving and then just start to cry, not sobbing just cry and cry.
I know first hand what’s coming and I think that’s what’s frightening me, I’ve been here do this week In week out , but this is killing me, the feeling of helplessness is enormous as I can’t fix this .
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,929
England
Hi @Deb6901 and welcome to Dementia Talking Point.

It’s hard, we all know about dementia but it’s that ‘it happens to other people ‘ and it won’t happen to us.

Then one day all is well and the-next our world is turned upside down, it has happened to us. It’s really understandable how you are feeling. My mother in law and my sister in law both had Alzheimer’s but it was a completely different kick in the stomach when my husband was diagnosed.

It was all a learning curve for me, my Mother in law had been a gentle elderly lady that Alzheimer’s had been kind to so time consuming in helping look after her but not difficult, my Sister in law I was not involved with other than visiting.

My world fell to pieces when at 62 my husband was diagnosed, I had no idea what was ahead of us so took it a day at a time. Tears flowed most days at the beginning, it natural so please don’t beat yourself up and you will cope, we all do.

I’m sure you will get lots of support and advice when you need it from the forum members, just post.
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,837
69
Dundee
Welcome to the forum @Deb6901.

I’m sorry to read about your mum’s diagnosis. No wonder you’re on such an emotional rollercoaster. It’s perfectly understandable. I’d imagine that it’s one thing dealing with dementia in your working life and another facing it in your own personal like.

I’m glad you’ve found this forum. I know there will always be someone here to listen and to support you.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Hi all .
my mum was diagnosed with Alzheimer’s only a week ago and I can’t get to grips with it. She’s had an awful memory for years but still functioned normally still drives her car ect ect.
my big issue is I’m a carer, a community carer and I specialise in end of life care, I have spent over 20 years dealing with this subject, for clients and families and now I’m a wreck.....
Just when I’m needed I’m terrified I’m scared I’m angry I’m just so sad, I get this is normal and like many I have read in hear my guilt is massive as I’m a crying wreck!!
I’m not sleeping because if bad dreams, I find I’m driving and then just start to cry, not sobbing just cry and cry.
I know first hand what’s coming and I think that’s what’s frightening me, I’ve been here do this week In week out , but this is killing me, the feeling of helplessness is enormous as I can’t fix this .
Oh my lovely you describe grief to perfection, that lost & broken tangle of emotions that bubble away inside continuously.
Each persons dementia journey is unique to them & you know this.
it’s so hard to rationalise emotions... & you feel as if your totally alone at times- especially when random crying moments occur!
but you aren’t now... TP has you in a big virtual hug & our varied experiences mean we can understand a little of how you feel.
(((((((((((Hugs)))))))))))))
It’s a !!!! Time I know, keep posting & reading !
xx
 

Agzy

Registered User
Nov 16, 2016
1,283
Moreton, Wirral. UK.
Hi @Deb6901 and welcome to the forum and the real pitface of caring for one of your own loved ones. I have no professional nor indeed amateur experience of caring but always imagined that if it was needed I could deliver it, I can’t and don’t think any of us caring for a loved one can in all reality. I agree totally with what @DesperateofDevon posted and feel for you so much and know that coming on here and just letting go will be met with understanding and comfort, stay as strong as you can.
 

Jaded'n'faded

Registered User
Jan 23, 2019
687
High Peak
I imagine that because you have seen so much 'end of life' in your work, when you think of your mum your mind immediately does a 'fast forward' to the last stages and that is breaking your heart. It must be very hard when you know so clearly what is to come.

But please don't despair - your mum is much the same as she was before the diagnosis - hold onto that if you can.
 

Hazara8

Registered User
Apr 6, 2015
416
Hi all .
my mum was diagnosed with Alzheimer’s only a week ago and I can’t get to grips with it. She’s had an awful memory for years but still functioned normally still drives her car ect ect.
my big issue is I’m a carer, a community carer and I specialise in end of life care, I have spent over 20 years dealing with this subject, for clients and families and now I’m a wreck.....
Just when I’m needed I’m terrified I’m scared I’m angry I’m just so sad, I get this is normal and like many I have read in hear my guilt is massive as I’m a crying wreck!!
I’m not sleeping because if bad dreams, I find I’m driving and then just start to cry, not sobbing just cry and cry.
I know first hand what’s coming and I think that’s what’s frightening me, I’ve been here do this week In week out , but this is killing me, the feeling of helplessness is enormous as I can’t fix this .
This is perhaps not unexpected, that raw "reality" which when removed - say as a carer, nurse or even specialist in end-of-life care - is manageable even when there is attachment and affection from that 'removed' standpoint. It is simply because the one who is so very close, either in relationship or as sibling or parent, that the attachment seems suddenly threatened, emotionally and physically. They often cite the term "bereavement " in this context because that is precisely what seems to take place when, say, Alzheimer's takes possession of a loved one. Strangely, there is a kind of acceptance for tangible outcomes, like an injury or an illness which is being managed. Then, there is a logical approach to treatment and condition and despite anxiety or maybe genuine apprehensions, the actual "person" remains intact with regard to interaction/relationship. Dementia throws up very different challenges indeed. Because the one living with it embarks on a journey which to this day remains a mystery. Those billions of brain cells being acted upon in such a way as to change not just the external behaviour, but fundamentally the internal, the mind and its capacity to think to recall to react - all of that presenting in often extremely challenging ways. So it is not surprising to feel very vulnerable when the dementia word is spoken in terms of a loved one. But every case is different and that is a fact. The key here is understanding the nature of " attachment ". That alone constitutes a dramatic realisation of just why we can experience such genuine anguish and pain when somebody who seemingly is a part of you, succumbs to dementia in whatever form. Dementia is unpredictable ( l don't mean clinical outcome diagnosis) because we are all different. But once the disease is confirmed, then it becomes absolutely necessary to adjust, as carer, not to deny nor to ever lose sight of the fact that the one being cared for is the one living with dementia and for the most part a total innocent in the manner it presents, whether passive and eccentric or erratic and aggressive. There are numerous texts on the whole spectrum of neurological diseases and the many dementias, or the most effective regimes of Care borne out by practice and direct outcome in this speciality. But when it taps you on YOUR shoulder, the world of dementia can seem like a bombshell and shake you to the core. The watchword ultimately is that of " comfort" and because it is not the baby in the cot, but an adult who is potentially as vulnerable and yet vulnerable in a very complex way, that "comfort" is not only a term of endearment, but constitutes an immense challenge and responsibility which perhaps does not always receive it's due recognition in both political and social circles. But once " you have been there " then you need no affirmation nor any endorsement from outside parties. Only an unbiased ear...... something you will find here. You will not feel alone.