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FTD is heartbreaking

Beaky144

Registered User
Nov 3, 2014
22
I am reaching a point that I can't go on any more. My mum is slipping further and further away. But on her "lucid" days she hates her care home, hates me, thinks she is fine and wants to kill herself. She's tried to do this twice now and that alone is heartbreaking. But when looks at me and says "I want to live with you" my heart breaks all over again. I left her today looking utterly devastated and its broken me again. I never knew a heart could break so many times over and over again.
My mum needs 24 hour care due to the FTD and associated mental illnesses such as delusions and paranoia. I work full time and can't afford not to. My mum would never want me to give my life up to care for her and I'm sure I couldn't manage it full time. But seeing her like this makes me think I should find a way to be her carer again.
There is no solution here. I know I just have to do all I can to help her whilst this disease takes her away. But when your best isn't even close to good enough that feels fairly useless. I just miss my mummy


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Kjn

Registered User
Jul 27, 2013
5,835
Oh how heartbreaking for you , I've no advice . It's torture I know ... Please accept a huge (((((((((hugggggggg)))))))))))) xx
 

Beaky144

Registered User
Nov 3, 2014
22
Thank you. I just needed to get that all out as I sat here sobbing. Xx


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Kjn

Registered User
Jul 27, 2013
5,835
Don't sob alone.
We are all here , you wouldnt believe how much everyone understands here.
Chin up ...keep talkin xxx:D
 

Gigglemore

Registered User
Oct 18, 2013
526
British Isles
Such a cruel disease. Torments your poor mother and torments the person who loves her.

Yes, you know that caring for her alone is an impossible dream. Well, about as possible as you winning the lottery and being able to conjure up a purpose built house and a team of carers to support you.

Hoping you and your poor mother have a happier visit next time and that she finds some peace. Take care.
 

Beaky144

Registered User
Nov 3, 2014
22
I saw the news that someone in the UK had won the lottery on Friday night and my first thought was please let that be me so that I can bring my mum home and spend a fortune on building her a nice home with me and carers there to help her at all times. I used to wish I would win the lottery so I could jet off round the world. Now I wish that I could just win enough to help my mum.

It definitely torments my mum as much as it torments me. She is so sad. That's the thing that is killing me now. I know she'll never be happy again but I just wish she could be a little less unhappy if that makes sense.

I am going on holiday for a week on Friday and I just hope that when I come back she is a little better mood wise. I'm not optimistic. The last time I had a few days away for a break she thought I was dead as she'd heard voices telling her that I was dead. So in reality I know I'll go and sit in the sun for a week and come back to my life which is a living hell.


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elizabeth20

Registered User
Dec 28, 2013
36
It is heartbreaking. My mum begs me to take her with me when I leave then I spend the short journey home feeling absolutely terrible as if I'd abandoned my own child.

She was living in her own home but didn't recognise it anymore infact it frightened her. She's now poorly in hospital and on seeing her yesterday she begged me to take her home.......

She is brighter today so hopefully may get back home where she is extremely well cared for and is so dreadfully unhappy all of the time. What a terrible existence.

Yes the lottery would help I would create a huge care facility and pay quality staff a quality salary to do a super job with wonderful resources and mum could invite all of you over for a great time
 

Beaky144

Registered User
Nov 3, 2014
22
I drive home in floods of tears after most visits with my mums begging voice in one ear and the sounds of doubt in the other. Part of me just wants to take her home, close out the real world and care for her 24/7. I know that's impossible and would send me crazy but it's a thought that creeps into my kind and stays long enough to keep me awake all night racked with guilt.
Hope you and your mum are doing ok Elizabeth xxx


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canary

Registered User
Feb 25, 2014
12,189
South coast
I am so sorry beaky. Mum is in a care home too and I could not bring her back to my home either, although she too wanted me to. Has your mum been in her care home long? I ask this as mum has now settled in her care home and is content.
Elizabeth, mum didnt recognise her own home either and she used to go walkabout and get lost because she was looking for "home". I discovered that she was looking for her childhood home. When people with dementia are asking to go home it is often a good idea to ask them to tell you about "home" because they often really mean that they want to go back to a time and place when they didnt feel frightened and confused.
 

Beaky144

Registered User
Nov 3, 2014
22
My mum has been in her care home since November 2014 and doesn't seem to be showing any signs of settling in. She can't remember where our house is and doesn't always know who I am. But she associates my name (Joanna) with the word home. So she asks everyone she meets "are you Joanna" :-( I just find it so hard to know how to help her or know what is best for her. It's so cruel for her and for us her family x


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canary

Registered User
Feb 25, 2014
12,189
South coast
Yes it is cruel disease. Im not sure what stage your mum is at. Can you get her to reminisce? If you can get her talking about home you might be able to get her to talk about people and other things too. Does she recognise photos?
 

elizabeth20

Registered User
Dec 28, 2013
36
Mum home tomorrow

Mum was due home today and when I got to the hospital she was having an anxiety attack and was so distressed but her relief was immense when she realised I was there to take her home? I realised straight away that this relief was because at last for all the months and months of asking she thought she was actually going home her childhood home not to the home that I called home that she has lived in for 50 years. I quickly put things in place for her and talked about her dog, her garden, her neighbours and her carers as I was terrified that once in her house she would become distraught because her parents weren't there and then I just wouldn't know what to do.

As it turned out she couldn't be released due to a paperwork 'thing' and I asked the nurse to tell her as I couldn't face the anguish and disappointment. My mum said 'oh that's ok' and dozed off to sleep!!

She is hopefully,'home' tomorrow.

You really can't imagine can you, all the hope for all that time of going home to your mum and dad and sisters to think at last it's actually happening I'm going home at last it's happening it's real I'm going home and then to find out that your back in the same house in the same chair with the same people that you have been trying to escape from for the last year! It must be a living hell.

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