• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

I'm so sad and helpless!

Jokirk3

Registered User
Jun 28, 2015
6
Hi. I'm new to the site! Im a carer for my mother who has picks disease. The disease is progressing extremely fast. She is 61 and was diagnosied at 59. She is in full time nursing care but I visit and take her out most days until late. Over last week multiple seizures, disorientation and has become aggresive and making accusations that staff and residents are taking her stuff and been cruel to her. She makes allegations against myself and has no recognition I'm her daughter but refers to me as her twin. She is always telling me she dosnt like me and she has become aggressive, agitated and violent. I'm Trying my very best to tell myself she's having a bad day or she is tired but it is really hard when she demands so much of me. I don't understand her disease entirely and it is killing me to watch the rapid deterioration. She refuses food and drink, she will only eat sweet food when it suits. This is becoming less and her weight is deteriorating, she is distressed, unkempt as she refuses any personal care, aggressive, obsessive, lacks inhinabitions, empathy ect.... Language is becoming very difficult for her to understand and convey. I have been told She will become mute eventually. I feel guilty all of the time and so extremely sad for her, I'm exhausted,and feel an obligation to see her most days to ensure she is ok! I feel my life Revolves around my mother and her care. Please please if anyone can advise me how to stop feeling so bad! I love my mum so much but she just abuses me and this has become more apparent recently. She is so tormented I can see it in her eyes. I know deep down she is moving towards later stages of the disease but I just cant except I'm watching her die in this awful way as so much of her is still here. Picks disease is the most horrible cruel disease. Im loosing my mum and watch her daily suffering. It is killing me !
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hello jokirk and welcome to TP :)

I am so sorry to read that your mother is so ill, and that it is so distressing for you (of course, how could it be otherwise?)

Your post is a cry from the heart and I only wish I were better equipped to answer it. You say that you don't entirely understand your mum's illness. I wonder whether the Alz Society's fact sheet on it might help? See

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=167

Also perhaps a call to the Alzheimer's Society helpline might be useful, or contact Admiral nurses. I'll post links later.

In the meantime, I can only say that it sounds like you are being an absolutely wonderful daughter to your mum. You are doing everything you can for her. But.....she would want you to care for yourself, too, wouldn't she? Somehow you need to find a way of continuing to care, but also taking a step back so that you have some life if your own.

I am sure others will be along with support.

Sending you every good wish and ((((hugs))))

Lindy xxx
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Oh my dear

Thankfully you are not alone....Sadly you are not alone.... But boy doesn't it feel like you are alone..... Late at night.....

Does it matter what your mum calls you? Of course, to you it does.... But she's calling you her twin.... she knows without being able to use the "correct" word, that you are a very special person to her

This evil, despicable disease..... A long painfully slow goodbye... That some days go too fast.... Every day they are lost... To you and themselves....

A huge bundle of support to you.

Now you have found TP (talking point) keep posting/talking/getting it off your chest. It's the safest, most caring and understanding non judgemental place I know of.... Hopefully you too will feel the same

xxxx


Sent from my iPhone using Talking Point
 

Jokirk3

Registered User
Jun 28, 2015
6
I'm thankful for any support and advice x

Hi Lindy.. Thank you for your kind words, support and warmth it really means a lot. I feel lost and lonely. When I say I don't understand her illnesses, that is nt entirely true. I just find it difficult as she hasn't faded away with the illness. As with alzhiemers there are stages with picks it is hard to decipher what stage she is in. I have been told she is moving toward late moderate /severe to later stages. But she is erratic and then has clarified moments and is able to discuss past, likes , dislikes ect. Her mood swings are alarming and totally bizarre. She can have several personality changes in minutes, she has become lost and scared I feel so sad for her my heart is breaking. Your kindness is very much appreciated I will contact admiral nurses and will continue to research this very unique awful disease. I just want answers that I know are impossible to answer I guess .

Thank you
Jo Kirk xxx
 

Jokirk3

Registered User
Jun 28, 2015
6
Thanks so much x

Oh my dear

Thankfully you are not alone....Sadly you are not alone.... But boy doesn't it feel like you are alone..... Late at night.....

Does it matter what your mum calls you? Of course, to you it does.... But she's calling you her twin.... she knows without being able to use the "correct" word, that you are a very special person to her

This evil, despicable disease..... A long painfully slow goodbye... That some days go too fast.... Every day they are lost... To you and themselves....

A huge bundle of support to you.

Now you have found TP (talking point) keep posting/talking/getting it off your chest. It's the safest, most caring and understanding non judgemental place I know of.... Hopefully you too will feel the same

xxxx


Sent from my iPhone using Talking Point
Thank you for all your support xxxx
 

Jokirk3

Registered User
Jun 28, 2015
6
Hi Lindy.. Thank you for your kind words, support and warmth it really means a lot. I feel lost and lonely. When I say I don't understand her illnesses, that is nt entirely true. I just find it difficult as she hasn't faded away with the illness. As with alzhiemers there are stages with picks it is hard to decipher what stage she is in. I have been told she is moving toward late moderate /severe to later stages. But she is erratic and then has clarified moments and is able to discuss past, likes , dislikes ect. Her mood swings are alarming and totally bizarre. She can have several personality changes in minutes, she has become lost and scared I feel so sad for her my heart is breaking. Your kindness is very much appreciated I will contact admiral nurses and will continue to research this very unique awful disease. I just want answers that I know are impossible to answer I guess .

Thank you
Jo Kirk xxx
thank you x
 

Jokirk3

Registered User
Jun 28, 2015
6
Thank you x

T
Do call these services, jokirk, they are there to help :)

Lindy xx[/QUOTE]

Thank you for all you support x your kindness and warmth means so much. I will contact Admiral nurses tomorrow x jo x
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hi again jokirk :)

I can understand how awful it must be to see your mum so distressed. You must be beside yourself. Do keep posting, there will be people on here with more direct experience than me (my mum is 93 and has been deteriorating slowly, and I find that hard enough to cope with).

Please take care of yourself :)

Love, Lindy xx

PS I think our posts crossed......x