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Feeling invisible and need to chat!

jennifer1967

Registered User
Mar 15, 2020
340
i get annoyed and i have shouted at my husband couldnt he clean up his mess. couldnt he throw the empty packet in the bin, couldnt he put his own clothes away and it was me that ended up crying as he didnt make the link. i know what i say seems trivial but get the sense of what im saying. he used to run the house when i went to work but i do everything now. it was a steep learning curve and i still wake in the morning knowing it will be the same routine. im only partly doing his personal care etc etc but as i was a carer in care home i know whats ahead and not looking forward to it but it needs doing. im not always positive and maybe people think that what i say is not valid as its not as bad as such and such but im doing the best i can that i can empathise. i agree burying yourself in a book is the best way of going to somewhere else on my sofa
 

Just me

Registered User
Nov 17, 2013
263
i get annoyed and i have shouted at my husband couldnt he clean up his mess. couldnt he throw the empty packet in the bin, couldnt he put his own clothes away and it was me that ended up crying as he didnt make the link. i know what i say seems trivial but get the sense of what im saying. he used to run the house when i went to work but i do everything now. it was a steep learning curve and i still wake in the morning knowing it will be the same routine. im only partly doing his personal care etc etc but as i was a carer in care home i know whats ahead and not looking forward to it but it needs doing. im not always positive and maybe people think that what i say is not valid as its not as bad as such and such but im doing the best i can that i can empathise. i agree burying yourself in a book is the best way of going to somewhere else on my sofa
I don’t think it’s trivial. It’s the repetitiveness, the constant clearing/cleaning up, dealing with confusion, anger etc and add in tiredness and little things build up.
Role reversal in any partnership is hard to adjust to and throw dementia into the mix 😳
 

DreamsAreReal

Registered User
Oct 17, 2015
16
I can go from being positive to wanting to run away several times in the same day, same hour... and depending what’s happening will reflect what I say, so please don’t put pressure on yourself feeling everyone is positive all the time.


Some people with dementia become very self centred and just don’t see anything other than their point of view. Thats the nature of the disease and nothing you can do will change it.

How do I cope? Badly a lot of the time, especially since lockdown.

When I get time I’ll message a friend or come on here but I often feel like getting in the car, driving off and not stopping.

The next moment I get an overwhelming feeling of love and sadness for what this horrible disease has done to mum.
Agree wholeheartedly with everything you posted (except groundhog day, but only ‘cos I’ve never seen it 😆).

I’m not a full time carer (yet) but the very thought of being trapped in my home 24/7 with my PWD fills me with dread.
 

MTM

Registered User
Jun 2, 2018
31
Hi, I am finding the fact that revently I don't get a response from mum when I'm talking to her upsetting even though I know it's mum's illness and her that doesn't respond. Mum has always been the one I could talk to, sit and watch TV with, offload to, share the washing up with infact all the simple every day interacting you do that now I know I took for granted, but am missing immensely now. Mum had me when she was 17 years old, she is now 76 with Alzheimer's, so we have always been close, open, honest and supportive of each other similar to close sisters and/or best friends would. How on earth do I learn to live with mum being there physically, but unable to acknowledge me, my feelings or even say good morning or good night....it hurts, I have lost not only my mum but my confident, my best friend, my "Goggleboxer". I am no longer thought of in any way shape or form, I know I sound selfish but believe me I'm not, I just can't get my head around losing what I need as a human being by way of company or how to cope with it. I'm immensely lonely and sad for both mum and myself
If it helps, I completely understand this feeling. It's totally natural. I missed my dad terribly for years before he died, and for the first time, last week, had the same feeling visiting Mum (Dad had Alzheimer's, Mum is undiagnosed but there's no point in giving it a name, dementia is dementia and she's scared of an official diagnosis, unlike Dad who would have benefited from one a lot sooner). I write books. My mum was a huge fan. Loved them. We used to chat about the characters and stuff. A while back, someone popped up who wanted to record them on audio. Mum was almost as excited as I was. We agreed that when the when the first book came through, I'd bring it down to share some bits with her.

When I got the recording, I did just that. But when I explained what I'd brought with me, I discovered she'd completely forgotten that I wrote books, what they are about or that she’d ever read and enjoyed them. All of it. Gone. In about six weeks. It hasn’t come back. It's a horrible feeling and a horrible thing to carry because you feel so selfish being hurt. But you know what. You're allowed to be. You're human too and you're doing your best and I bet your pre-dementia Mum, who is still in there somewhere, would understand.

My grandmother died of dementia and I remember, for the last year, she was just lying in a bed in a care home, totally oblivious. Mum said she used to go visit her every week and just sit there weeping for 40 minutes. She said the care home staff were wonderful and used to tell her, 'she's different after you've gone'. If it helps you, hold on to that. It kept me going visiting Dad when he seemed very unresponsive. She can show you no sign but she may be more aware of you than you think.

Take care and god bless,

MTM