Someone please help me

[NaiNai]

Hello someone, anyone
I am a 29 year old woman who is struggling extremely hard with my mother newly being diagnosed with Alzheimer's aged 66. I have very little support and find myself constantly crying. For the last year we (my brother and I) knew something was happening to mum but nobody wanted to listen nor help. My mother had a brain scan in December 12 which we now know confirmed mum had Alzheimer's, the system forgot about mum and went undiagnosed for 6 more months until she did not recognise us one day and could barely walk. I'm trying to stay strong but I can not pretend any more. When I look at my mother it breaks my heart because she looks like my mother but its not her. I feel as though I have lost my mother as well as my best friend yet she is still living. I can't watch this long process of my mother suffering. It's so wrong. Why god, why did you have to pick my mum?

 

[Noorza]

Ohh sweetheart I could have written your post, I feel every ounce of your pain but I have nothing to take it away other than to tell you that you have found a site full of people who are so kind and will understand. ((((hugs)))))

 

[NaiNai]

Ohh sweetheart I could have written your post, I feel every ounce of your pain but I have nothing to take it away other than to tell you that you have found a site full of people who are so kind and will understand. ((((hugs)))))

Thank you, my friends don't know what to say so they stay away. My world feels so lonely.

 

[Noorza]

Thank you, my friends don't know what to say so they stay away. My world feels so lonely.

It is a lonely world especially one where you join it at such a young age, it is likely your friends wont have any experience of dementia or alzeimers. You are with friends here who do understand, not all of us understand how it it so be so young and dealing with this, but we do understand how dementia is so devastating.


I hope that we can help you. I do know how you feel, even at 50 I miss the Mum I had, I even miss the irritating maddening phone calls that she can't make any more now she is in hospital.

I hope we can help you just a little bit.

 

[rajahh]

My own mother became ill with Alzheimers when she was 60 and slowly over the next 4 years she deteriorated, she lived another 4 years after that but did not speak, did not know us, was incontinent. I was about your age too , I had 4 children though and a husband so my life still carried on .

My father was still alive and he cared for my mother and I visited twice a day until we eventually moved away due to my husbands work. By this time my mother was in care.

I used to visit her when I came to see my father, and sit and hold this strangers hands and cry. My mother never even noticed I was crying.

You are right when you say this person looks like your mother but she is a stranger.

You have come to a good place here where you will be supported, and encouraged,

keep talking to us. Love Jeannette

 

[Noorza]

Nainai just wanted to let you know that the title of your thread has me in tears just because I feel the same way. It is a devastating disease in so many ways.

 

[Izzy]

Nainai I'm sorry to read about your situation. It really is heartbreaking. Has you mother had a needs assessment? I also wondered if you have had a Carers assessment. If not I would urge you to arrange these through your local Social Services Department.

Here is a link which explains a bit about the process. Sorry if you've already had this.

http://www.alzheimers.org.uk/site/scripts/download.php?fileID=1812

 

[NaiNai]

Nainai just wanted to let you know that the title of your thread has me in tears just because I feel the same way. It is a devastating disease in so many ways.

I'm sorry, what I can't get my head around is the quick deterioration of my mothers health, she shuffles when she is able to walk (she has to use a walking stick and a frame when really bad) she has a look in her eye where she's not all there. The present is none existent and the past all over the place. Where she was able to toilet by herself she has now has to wear pads. Until recently I was having to bath her as she can longer do so. She now how's carers to do this. She attends a day centre and on her first day I cried so much that my eyes swelled shut because she was 20 if not more years younger then the other people there. My brother can't talk about it as being a "MAN" he doesn't want to show me his emotions, I feel lost because I can't help him. Sorry for off loading, I have not spoken to anyone about my feelings. And to top it off my mother has other health issues and takes a cocktail of drugs and the doctors are saying if she continues it will cause premature death. It's a constant bomb exploding week after week.

 

[NaiNai]

Nainai I'm sorry to read about your situation. It really is heartbreaking. Has you mother had a needs assessment? I also wondered if you have had a Carers assessment. If not I would urge you to arrange these through your local Social Services Department.

Here is a link which explains a bit about the process. Sorry if you've already had this.


Thank you for taking the time to have a read. Lucky for mum I work office based for a care company so I know all there is to know in regards to care support. It's the medical stuff I'm struggling with and the emotion side. Everyone assumes because I work in the care field I would be coping better but I'm so not.

 

[NaiNai]

My own mother became ill with Alzheimers when she was 60 and slowly over the next 4 years she deteriorated, she lived another 4 years after that but did not speak, did not know us, was incontinent. I was about your age too , I had 4 children though and a husband so my life still carried on .

My father was still alive and he cared for my mother and I visited twice a day until we eventually moved away due to my husbands work. By this time my mother was in care.

I used to visit her when I came to see my father, and sit and hold this strangers hands and cry. My mother never even noticed I was crying.

You are right when you say this person looks like your mother but she is a stranger.

You have come to a good place here where you will be supported, and encouraged,

keep talking to us. Love Jeannette

Thank you for sharing, already I fell comfort knowing that I'm not alone anymore.

 

[Varandas]

Dear NaiNai ,
I am so sorry to read about your story and just want to send you positive thoughts and strength. Fortunately you've found TP and many people will be able to offer practical advice and comfort.
Although so young it is a very heavy burden to see your dear Mom deteriorating in front of your eyes.
AD is a dreadful illness and sadly it steals away the people we love.
Please do not despair, you are not alone in this terrible world of Alzheimer's and dementia and I hope you can find here comfort to hang on and slowly, gently be able to accept the things you can not change.
Be brave and courage my friend
All the best

 

[NaiNai]

Dear NaiNai ,
I am so sorry to read about your story and just want to send you positive thoughts and strength. Fortunately you've found TP and many people will be able to offer practical advice and comfort.
Although so young it is a very heavy burden to see your dear Mom deteriorating in front of your eyes.
AD is a dreadful illness and sadly it steals away the people we love.
Please do not despair, you are not alone in this terrible world of Alzheimer's and dementia and I hope you can find here comfort to hang on and slowly, gently be able to accept the things you can not change.
Be brave and courage my friend
All the best

Thank you, finally I have people, GOOD people who understand.

 

[LYN T]

Hi

I'm so sorry that you are feeling so depressed, but it's very understandable. My own husband became ill at the age of 59. He was only officially diagnosed last summer; he is now 66 and in a CH. He too had a brain scan (four years ago) which showed Alzheimers but the consultant missed the signs. It was looked at agin last year and it was analysed correctly this time.

Pete is also going quickly through his journey and it is indeed heartbreaking.Everyone here will understand why you are struggling withe the emotion;a care worker at my husbands CH says she would struggle to cope if she had to do it 24/7 with a family member.

On this forum you will find people who understand what you are going through. Please, please continue to post when ever you want advice or just a 'rant'.

So sorry

Take care Lyn T

 

[NaiNai]

Hi

I'm so sorry that you are feeling so depressed, but it's very understandable. My own husband became ill at the age of 59. He was only officially diagnosed last summer; he is now 66 and in a CH. He too had a brain scan (four years ago) which showed Alzheimers but the consultant missed the signs. It was looked at agin last year and it was analysed correctly this time.

Pete is also going quickly through his journey and it is indeed heartbreaking.Everyone here will understand why you are struggling withe the emotion;a care worker at my husbands CH says she would struggle to cope if she had to do it 24/7 with a family member.

On this forum you will find people who understand what you are going through. Please, please continue to post when ever you want advice or just a 'rant'.

So sorry

Take care Lyn T

I'm so sorry to hear of your husband. My biggest fear is mum not knowing how much I love her. Does your husband remember /know you do ?

 

[Cornishman]

Dear NaiNai

Glad you too found the site just like I have recently.

It can feel very lonely as the official organisations such as various parts of the NHS and Social Services can seem very dogmatic and detached from the emotional pain that so many family's experience.

I've learnt not always to take what you're told when dealing with these organisations as "fact" or "the rules" because often professionals will tell you anything just to keep a case "moving along". They often take the "line of least resistance", even where that isn't in the person's best interest or plain wrong. Sorry if that sounds a bit negative, but it's best to know of these possibilities early on.

In contrast, I've discovered on here there are what I imagine are fairly ordinary people like you and me with a variety of experience of a common problem.
What's precious in my experience is that these same people have a good heart and really only want those affected by an illness through no fault of their own to receive all the help and care they, and you, deserve.
So hopefully today you can be comforted a little by the knowledge there are those who do care and I'm sure there's a wealth of good advice awaiting you.
Take care and keep strong - a step at a time.

 

[LYN T]

I'm so sorry to hear of your husband. My biggest fear is mum not knowing how much I love her. Does your husband remember /know you do ?

My husband has no knowledge of me being his wife;however he does know me as a nice person who visits him everyday and brings him treats and listens to music with him.
Sometimes he says to me 'you are perfect' which is far removed from the truth

However as he's almost lost his speech I'm grateful for that.

Not everyone suffering from dementia experience all of the symptoms (I'm sure you know that anyway), so my advice would be don't look too far ahead.Be kind to your Mum (as I'm sure you are) and she, like my husband with me,will connect with you in some way.It may not be a way that we can recognise but it will be there. Look for little signs such as her holding your hand as tight as you hold hers.Maybe she will smile at you (and break your heart in doing so) or other ways.

Always remember that your Mum knew that you loved her before she became ill-and that was the 'real' Mum.

Be strong my love

Take care

Lyn T

 

[Jaycee23]

Hi just wanted to say that I really feel for you and want you to know that coming on here will help you in some way releive the stress and the opportunity to unload to people who know what you are going through. TP's on here know all about the frustrations and feelings of helplessness when seeing our loved ones disappearing in front of our very eyes. I like to think that I take each day at a time and try and think about my mum as she was and accept that she is not that person anymore. She has lucid moments which I try to cherish and thats what we do. Keep in touch and take care we are always here.

 

[Vabjgb1]

This is so sad you are going through this at such a young age

My father was not diagnosed for a while they kept telling us it was old age, until they finally did a scan.
It is so hard he was my mums Carer as she went blind overnight 5 yrs ago.
We feel we have had to fight for any help we have now got, and feel that we have now been left to get on with it.
I hope that just talking to others on here will help, as you can feel so alone.