Negativity and Giving Up

[Jem9119]

My 93year old mum has always been very independently minded and capable. She’s always had the mantra ‘Get up and get on’ and is a real fighter. Recently, Alzheimer’s seems to have robbed her of this however.
Following a brief spell in a care home for respite, where she was deeply unhappy about not being home and highly challenging in her behaviour, she is now back at home with my dad and an expensive (but wonderful) 24/7 live in carer.
My sister and I hoped Mum would improve on returning home to familiar surroundings, but she has now sunk into an incredibly low mood where she just says she’s very unhappy and depressed all the time. She is repeatedly saying ‘I don’t want this’ and ‘I want out’, along with ‘You won’t need to bother soon’ etc etc. I’ve tried to talk with her about what’s upsetting her and how we can help, but it just seems that she wants to be ‘herself’ (I don’t feel like me) and young again with all her faculties and there’s nothing we can do about that. Today it was almost relentless and she kept saying ‘I don’t want you to visit anymore, I’m not me.’ ‘I don’t want to be here’.
It really feels like she’s given up and that this constant chatter about giving up and wanting the end of her life will end up being a self fulfilling prophecy.
Does anyone have any experience of this? What should we say to her, if anything? My dad is very upset about the whole thing.

 

[Kevinl]

I really, truly don't know what to say, read it twice and still stuck for words and that's not like me something over 10 years down the line, wife first then mum too.
You are being listened to by us all. K

 

[Izzy]

I’m so sorry to hear about your mum. It must be really hard to know what to do. I wondered if you’ve had a chat with her GP. She sounds quite depressed and maybe the GP could help with that.

Have a look at this and see if there’s anything there to help -

Depression and dementia

Depression is common in people with dementia. Having depression can make it much harder to live as well as possible with dementia. It can also worsen problems with memory and thinking.

www.alzheimers.org.uk

 

[Calon Lan]

Hi @Jem9119

I am very sorry that your mum is so unhappy and depressed. It is an extremely difficult situation for you, your sister and your dad.

My mum is 91 and she has Alzheimer’s and vascular dementia. She lives in a nursing home. She has times when she can become very unhappy, most often when she is sundowning later in the afternoon. She’s usually very tired when this happens. She often says “I don’t know where I am or who I am” when she has a bad episode. She also talks about being at the end of her life. I just sit with her and try to reassure her. If it seems it might help I try to divert her thoughts onto something else, but often she’s too tired and distressed for this to work. I’ve found that trying to discover what’s wrong with my mum very rarely helps. She usually can’t tell me anything specific and she can become quite frustrated if I ask too many questions. I do ask about any pain or discomfort. My mum has bad back pain at times. I can ask a nurse at the home for a paracetamol tablet if my mum hasn’t had one recently.

It’s very difficult to know how someone with dementia thinks. I suspect you are right, your mum wants to be “herself” again. She wants to be free from her illness and return to being the independent and capable lady she was before she became unwell. She can’t fully explain that to you, but she knows something is very wrong. I think this is what’s happening when my mum has episodes of low mood.

I wish I had some better suggestions for you to help manage your mum’s distress. I hope that things improve for your mum and your dad, and for you and your sister.

Take care.

 

[Jem9119]

My 93year old mum has always been very independently minded and capable. She’s always had the mantra ‘Get up and get on’ and is a real fighter. Recently, Alzheimer’s seems to have robbed her of this however.
Following a brief spell in a care home for respite, where she was deeply unhappy about not being home and highly challenging in her behaviour, she is now back at home with my dad and an expensive (but wonderful) 24/7 live in carer.
My sister and I hoped Mum would improve on returning home to familiar surroundings, but she has now sunk into an incredibly low mood where she just says she’s very unhappy and depressed all the time. She is repeatedly saying ‘I don’t want this’ and ‘I want out’, along with ‘You won’t need to bother soon’ etc etc. I’ve tried to talk with her about what’s upsetting her and how we can help, but it just seems that she wants to be ‘herself’ (I don’t feel like me) and young again with all her faculties and there’s nothing we can do about that. Today it was almost relentless and she kept saying ‘I don’t want you to visit anymore, I’m not me.’ ‘I don’t want to be here’.
It really feels like she’s given up and that this constant chatter about giving up and wanting the end of her life will end up being a self fulfilling prophecy.
Does anyone have any experience of this? What should we say to her, if anything? My dad is very upset about the whole thing.

Hi @Jem9119

I am very sorry that your mum is so unhappy and depressed. It is an extremely difficult situation for you, your sister and your dad.

My mum is 91 and she has Alzheimer’s and vascular dementia. She lives in a nursing home. She has times when she can become very unhappy, most often when she is sundowning later in the afternoon. She’s usually very tired when this happens. She often says “I don’t know where I am or who I am” when she has a bad episode. She also talks about being at the end of her life. I just sit with her and try to reassure her. If it seems it might help I try to divert her thoughts onto something else, but often she’s too tired and distressed for this to work. I’ve found that trying to discover what’s wrong with my mum very rarely helps. She usually can’t tell me anything specific and she can become quite frustrated if I ask too many questions. I do ask about any pain or discomfort. My mum has bad back pain at times. I can ask a nurse at the home for a paracetamol tablet if my mum hasn’t had one recently.

It’s very difficult to know how someone with dementia thinks. I suspect you are right, your mum wants to be “herself” again. She wants to be free from her illness and return to being the independent and capable lady she was before she became unwell. She can’t fully explain that to you, but she knows something is very wrong. I think this is what’s happening when my mum has episodes of low mood.

I wish I had some better suggestions for you to help manage your mum’s distress. I hope that things improve for your mum and your dad, and for you and your sister.

Take care.

Thank you so much for your reply, I really appreciate it. I will take your advice on not seeking what’s wrong, other than pain etc. It has just led to spiralling distress for both of us. My 88 year old dad has his own health issues and sometimes doesn’t help as he’s partly in denial about mum being ill and just thinks that she needs ‘cheering up’, bless him.
Sending a virtual hug for you and your mum. X

 

[Lawson58]

I often wonder if when you get old and have been living with confusion, stress and illness, that staying alive and finding a purpose to continue is just too much. It’s all become just so hard that enough is enough.

A lady well into her nineties and very lucid and with it, was occasionally a guest on a current affairs program and one of her responses was that each day when she woke up, she would think, ’Damn, I’m still here.’

Perhaps we shouldn’t be too surprised whenever elderly people have a different attitude about the quality of life or lack of it in their lives and their recognition that they are approaching their last days, months, maybe years and simply don’t want to be as they any more.

 

[maggie6445]

I agree, my mum had dementia and apparently she said every morning during mid stage " The good Lord didn't answer my prayer again to take me" She went before late stage with cancer so maybe He did!

Dad,no dementia ,said to my brother in the February that he hadn't got many days left. He had no particular illness but was 92 . We lost him by July.

Maybe they know when it's their time.