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am I strong enough - selfish thoughts

Hazel 1944

New member
Dec 14, 2021
5
0
Please don't feel that you are in the minority, and that most people are coping well with this. They are absolutely not - despite all the happy, smiley, leaflets that would have you believe otherwise.
I care for my Mum, so a different relationship, but I cannot put into words how utterly relentless, depressing and miserable it is. You are powerless to control it and have no idea when it will end.
All I can say is try and get some respite - be that a sitter, or a daycentre or club that your husband can attend unaccompanied.
I sincerely doubt that you will offend anyone here. We all understand those very dark thoughts, that would send the non-dementia world into apoplexy - because they really have no idea what this is like.

I would also recommend "The Selfish Pig's Guide to Caring", which will hoefully make you smile, and realise that you are not alone.
Thank you so much for the recommendation of The Selfish Pig. It encouraged me to join this forum . I am relieved to find somewhere I can be angry about the assumption that I will step in . I have known my husband since 1967 and anticipate that I will do my best, however it is at a cost to myself which upsets my husband. This thing only goes one way. Anyway here I am looking to give and receive support about the cruel experience for the one with alzheimers and the " Carer"
Thank you
I may try to find or support a movement to remove the relentless smiles on Alzheimer literature. It is not necessary in every photo It is not real
Thank you
 

Hazel 1944

New member
Dec 14, 2021
5
0
@Knitandpurl absolutely! Great show put on for others Someone at an Alzheimer's group recently said I was ok as my husband was all right except for his mobility problems. Hollow laugh. Same husband didn't know who I was this evening - said I had kidnapped him but he quite liked being here so could he stay for a bit (we have lived here 10 years!) This was after earlier telling me how much he hated me too... Always worse in the evening, and rarely anyone else around. I am usually delighted if he goes to bed early ( though he doesn't stay there but keeps coming down to ask another question.,
Thanks for your honesty. I am reluctant to join a group such as the one you describe as I would not want to put up with such ignorance and lack of regard.
I recognise the loneliness of other folks ignorance .
Good thoughts to all of you managing this stuff. Thank you
 

Hazel 1944

New member
Dec 14, 2021
5
0
At an earlier stage my husband and myself would joke about the stairs being an essential resource. o_Oo_Oo_Oo_Oo_O
The visiting social worker did not join in the laughter.
 

Dutchman

Registered User
May 26, 2017
1,625
0
74
Devon, Totnes
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
I’ve just come across your post. You will find it hard to upset anyone here as we’ve grown a thicker skin and most of us have had challenges with dementia only others can wonder about.

Here we can just open up honestly and just moan or rant and tell it like it is.
 

Pots and Pans

Registered User
Jan 13, 2020
156
0
Thanks for your honesty. I am reluctant to join a group such as the one you describe as I would not want to put up with such ignorance and lack of regard.
I recognise the loneliness of other folks ignorance .
Good thoughts to all of you managing this stuff. Thank you
Wasn't the group organiser but another carer who thought we were ok. Organiser totally knows more is wrong. Groups have been a lifeline actually.... exercise, outdoor group 'walks', memory cafe.... would definitely recommend trying. Can be fun for both of us.
 

Hazel 1944

New member
Dec 14, 2021
5
0
Hi @Splash . Welcome to dementia talking point.

I didn't ask dad if he needed help - he'd have said no. Instead I just went ahead and organised it slowly started with some one to help with the cleaning and gardening and gradually increasing he help as he needed it.

Don't talk to him about it, my dad always said he was fine and whatever he needed I would do for him 🙄. Eventually I couldn't so I'd just tell him I had to work and "my friend" was looking for a little job so she'd be doing whatever was needed for him. Just think of something you think he'd accept (you have a bad back/leg/whatever and need help until it's better...) Or course it will never get better but he doesn't need to know that 😉

I know this goes against the grain when you're used to sharing and discussing everything but, unfortunately, dementia takes away the understanding of the true situation so you'll have to make the decisions for both of you now.
 

Hazel 1944

New member
Dec 14, 2021
5
0
Hi
I really appreciate that strategy. It has taken me some time to not try to discus and gain agreement with my husband as I know it will cause more stress for both of us.
I especially applaud your way of taking care of yourself.
Hazel
 

hybiscus

Registered User
Dec 31, 2021
14
0
I am 64 and my husband is 65 - he has been diagnosed with early onset Alzheimer's last october but has probably had it for about 3 years - we are devastated have only known each other 12 years and married 4 - he has changed so much he was a lively funny kind social person very independent and really looked after me - now he has changed into a very quiet , no confidence , muddled , slow, cant cope person who does not hardly talk - he now does not seem to want to do much at all except watch tv and to be told what to do as he cannot plan - he is so moody and says things he does not remember and would never had said before - i feel so so tied to him and tired - already - (i have fibromyalgia -] he shows no affection or apathy for me - and i know this will get worse - this awful illness does not only ruin one life but two - i am also missing the man i loved - this stranger has appeared so sorry if i offend anyone - who is managing so well with this - Neese
 

hybiscus

Registered User
Dec 31, 2021
14
0
hi nees201 please don't be sorry. you are not on your own with those type of feelings.
I know I sometimes think my man has been taken away and a look alike put in his place.
I feel guilty sometimes too if I get cross with him because I know its his illness that makes him the way he is now.
Please try and get some respit from either friends or family or from outside carers, because as people keep saying to me (look after yourself)
my thoughts are with you
 

Libbybookworm

Registered User
Apr 6, 2018
20
0
Please don't feel that you are in the minority, and that most people are coping well with this. They are absolutely not - despite all the happy, smiley, leaflets that would have you believe otherwise.
I care for my Mum, so a different relationship, but I cannot put into words how utterly relentless, depressing and miserable it is. You are powerless to control it and have no idea when it will end.
All I can say is try and get some respite - be that a sitter, or a daycentre or club that your husband can attend unaccompanied.
I sincerely doubt that you will offend anyone here. We all understand those very dark thoughts, that would send the non-dementia world into apoplexy - because they really have no idea what this is like.

I would also recommend "The Selfish Pig's Guide to Caring", which will hoefully make you smile, and realise that you are not alone.
Thank you @lollyc for the recommendation. I've just started reading it, perfect!