Things not to say to me - rant warning!

WA123

Registered User
Jan 20, 2018
85
0
Rant Warning... no need to warn us, happy to participate.
The thing that gets to me is people who generically joke about having dementia because they have temporarily lost or forgotten something. I can't judge them, because until OH and I were in this situation, I would make the same flippant remarks.
Misunderstanding of dementia hurts. People interpret OHs behaviour as intentional, rather than as a result of his condition . How to explain?
We have lots of friends who have offered to help but don't know what's needed or what to say so I have organised a talk on dementia in my village. I thought we might have around 5 or 6 people but 20 have signed up and we have a waiting list. People do want to help and they also want to understand we just need to give them the information.
 

Quenelise

Registered User
Oct 7, 2017
151
0
We have lots of friends who have offered to help but don't know what's needed or what to say so I have organised a talk on dementia in my village. I thought we might have around 5 or 6 people but 20 have signed up and we have a waiting list. People do want to help and they also want to understand we just need to give them the information.
Wow , fantastic idea!
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
Does your OH have Alzheimers? If he has any other sort of dementia (Vascular, Lewy Bodies, FTD etc) then Aricept wont work. There may also be other problems - mum couldnt have Aricept to start with because she had a slow heart beat and Aricept slows down the heart further. There are other side-effects - nausea, aggression, dizziness (among other things) that perhaps the doctor doesnt want to increase or the PWD cant tolerate.

People who simply assume that there is going to medication for any type of dementia just dont know much about dementia.

I certainly agree with this @canary. More than 10 years ago my Mother could not have any medication because of her underlying heart problems. So when my know-nothing stepson tells me that medication is all that his mother needs I remain sceptical. Even though my wife has taken Donepezil for almost 2 years I have no solid evidence - but just a feeling - that it has made that much of a difference.
 

imsoblue

Registered User
Feb 19, 2018
355
0
I am using this thread to re-rant what not to say to me:
Quote from OHs brother, a seemingly intelligent attorney who lives an hour away and is passing on local attorney phone numbers to OHs daughter (That One) so she can get him to an attorney to divorce me...
I'm not convinced he has dementia.
And yet, he received the doctor's diagnosis and a copy of the test scores. I could diagnosis him myself and I don't have a PhD or MD after my name. My handy man diagnosed him the first time he saw him and he doesn't have a college degree.
I am still livid!
 

WA123

Registered User
Jan 20, 2018
85
0
Wow , fantastic idea!
I hope so Quenelise. It's a small village and we have lots of events through the year so it will really help if people are more comfortable around us just because they understand a little more
 

kindred

Registered User
Apr 8, 2018
2,937
0
Such a great thread @Life so much has made me want to rant these last few months since Uncle has had a severe decline and been in and out of hospital, from people saying "I hope he is home soon" (worst possible outcome for the family quite frankly) to, on hearing that he was now in a Care Home "give him a hug from me" yes, when he stops screaming take me home and that his wife is no longer his wife because she has put him in this prison, I will try and deliver your hug.. I know they mean well. One even said "I didn't realise he had dementia" are you kidding me? His wife must have been doing an awesome job at helping him present as normal is all I can say to that.. TP is just great for a rant, I thank my lucky stars we found it. Rose x
Oh yes, darling, what people say, I know, lovely to hear from you. Sorry about all of this. I get it too, I get, how do you like sleeping on your own? (Oh in nursing home now), do you miss Keith? (OH) and yesterday stunningly, if K could die now, would you like that? (totally out of blue and in a conversation about blackbirds). It is usually about their own stuff, the latter was considering her father who is terminally ill, and obviously women are afraid of being on their own and left, but I wish they would SHUT UP!! with you all the way. Thank you! Gx
 

Agzy

Registered User
Nov 16, 2016
3,777
0
Moreton, Wirral. UK.
“ She doesn’t present with dementia.”
“ Naw, she hasn’t got it, she’s my mam, hasn’t changed just got older and a bit confused.” ( This from her son who only visits on Mother’s Day, Christmas Day and her birthday ).
“ And you let her go out on her own?”
“ What you are going on holiday on your own when you really should be looking after her.”
The list goes on as does holding my breath and counting to ten etc etc.
 

kindred

Registered User
Apr 8, 2018
2,937
0
“ She doesn’t present with dementia.”
“ Naw, she hasn’t got it, she’s my mam, hasn’t changed just got older and a bit confused.” ( This from her son who only visits on Mother’s Day, Christmas Day and her birthday ).
“ And you let her go out on her own?”
“ What you are going on holiday on your own when you really should be looking after her.”
The list goes on as does holding my breath and counting to ten etc etc.
Bloomin heck. It's a dangerous world out there with all this **** being said.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Such a great thread @Life so much has made me want to rant these last few months since Uncle has had a severe decline and been in and out of hospital, from people saying "I hope he is home soon" (worst possible outcome for the family quite frankly) to, on hearing that he was now in a Care Home "give him a hug from me" yes, when he stops screaming take me home and that his wife is no longer his wife because she has put him in this prison, I will try and deliver your hug.. I know they mean well. One even said "I didn't realise he had dementia" are you kidding me? His wife must have been doing an awesome job at helping him present as normal is all I can say to that.. TP is just great for a rant, I thank my lucky stars we found it. Rose x
What a beautiful rose for your image! I thought it so I’m saying it, beautiful. BTW if I think of trying to describe my conversation with my OH it sounds so ridiculous that I can’t put the words together, consequently people don’t realise how bad he is and keep making ‘boosting him up’, and ‘getting him interested in something’ remarks. I am exhausted enough just looking after him 24/7.
 

kindred

Registered User
Apr 8, 2018
2,937
0
What a beautiful rose for your image! I thought it so I’m saying it, beautiful. BTW if I think of trying to describe my conversation with my OH it sounds so ridiculous that I can’t put the words together, consequently people don’t realise how bad he is and keep making ‘boosting him up’, and ‘getting him interested in something’ remarks. I am exhausted enough just looking after him 24/7.
Of course you are! I used to feel like a Butlins Redcoat, all round entertainer etc and of course, dementia is such an energy black hole that we need twice as much. All strength to you!
 

lovey11

Registered User
Apr 30, 2017
14
0
I can't bear the pain and sorrow of this insidious disease. My lovely husband of only five years is leaving me a little each day. He was diagnosed with young onset last year and our whole life has been turned upside down. My Oh seems to be losing his powers of communication and his word finding becomes more difficult every day consequently he is withdrawn and often very down. If anyone says to me that there elderly relatives suffered with dementia and they know how difficult it can be I think I'll scream!!!
 

kindred

Registered User
Apr 8, 2018
2,937
0
I can't bear the pain and sorrow of this insidious disease. My lovely husband of only five years is leaving me a little each day. He was diagnosed with young onset last year and our whole life has been turned upside down. My Oh seems to be losing his powers of communication and his word finding becomes more difficult every day consequently he is withdrawn and often very down. If anyone says to me that there elderly relatives suffered with dementia and they know how difficult it can be I think I'll scream!!!
Oh I know, this is a different relationship and a young one and they do not know how it is. I am so sorry, I know, pain and sorrow and the loss of the love of our lives. All my thoughts and fellow feeling and please believe me, I do know how it is. Please keep talking to us. Gxx
 

Azza19

New member
Jun 1, 2018
4
0
Reading this thread made me feel better. I have been looking after my mother for 3 years. I brought her to live with me when she was diagnosed with Alzheimers. It's completely changed our lives. Knowing what I know now I don't think I should have done it. The last six months have been terrible and frankly I am sick and tired with the lack of understanding of dementia not just by people in general but from the professionals as well. "Living well with dementia" only applies to those in the really early stages. After a while it's just "Existing with dementia"... it's not a life. I have asked for help and guidance from social services and doctors for months. Useless. Nothing. Two weeks ago I went to see the doc myself. I was at breaking point after sleep deprivation with the nights mum constantly wakes me up hour after hour. When i told the doctor how i felt and cried and vocalised how fed up i am of cleaning up sh** every day and trying to work as well etc etc the doctor said I was being aggressive and threw me out. I wasn't been aggressive at all. I just told it how it is. She said they have a zero tolerance policy. Well so do I. They do zero and I can't tolerate it! The next doctor said I am depressed and my illness is blowing mums dementia illness out of proportion in my head. I nearly laughed out loud. Ridiculous woman. I said come and spend 24 hours with me! I know you all understand. When others look at me with the "pity" look on their face and say "I do understand... it must be hard... you are doing a great job" I want to say "No you absolutely don't, it's terrible and I didn't ever fill in an application form for this job" . My mum lived a very healthy life. She did EVERY thing she could to avoid this disease but it got her and EVERY day I am mourning the loss of my highly intelligent mother who left me when this disease took every ounce of her knowledge away. It's just her failing body I am looking after now until eventually that gives up too.
 

Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
So sorry, Azza19. I too took on my mum without looking at the job description, the hours and the pay and no interview. I didn't want to do it but you step in when they start getting their finances and appointments muddled and before you know it all the family have taken one step backwards and you are the 'volunteer' to have her move in with you, move house to accommodate her, give up your full time job, give up your social life, etc. etc. GPs just dish out antidepressants (I refused, I was not depressed I was just bloody worn out - mentally and physically). Pity looks - ah yes, that head on one side, slight smile and meaningless drivel. On top of that, every conversation you have with anyone is punctuated at the beginning or the end by "How's your mum?" Never mind her, she doesn't know how she feels from minute to minute but very often I was just SO angry. I found a bit of black humour helped and tried to find some of the ridiculous and funny things that happened to temper the tedium, the lack of support and the sheer hard work.
Mum died a little while ago. In some ways it WAS fortunate that it was a short physical illness so she did not suffer the indignities of the end of life with dementia. She was still going to her clubs and into day care (couldn't remember it but she enjoyed it while she was there).
I will not insult you by saying you are doing a grand job - you know you are and that phrase is pretty meaningless when you are surrounded by the endless sxxt in all its forms!
 

kindred

Registered User
Apr 8, 2018
2,937
0
Reading this thread made me feel better. I have been looking after my mother for 3 years. I brought her to live with me when she was diagnosed with Alzheimers. It's completely changed our lives. Knowing what I know now I don't think I should have done it. The last six months have been terrible and frankly I am sick and tired with the lack of understanding of dementia not just by people in general but from the professionals as well. "Living well with dementia" only applies to those in the really early stages. After a while it's just "Existing with dementia"... it's not a life. I have asked for help and guidance from social services and doctors for months. Useless. Nothing. Two weeks ago I went to see the doc myself. I was at breaking point after sleep deprivation with the nights mum constantly wakes me up hour after hour. When i told the doctor how i felt and cried and vocalised how fed up i am of cleaning up sh** every day and trying to work as well etc etc the doctor said I was being aggressive and threw me out. I wasn't been aggressive at all. I just told it how it is. She said they have a zero tolerance policy. Well so do I. They do zero and I can't tolerate it! The next doctor said I am depressed and my illness is blowing mums dementia illness out of proportion in my head. I nearly laughed out loud. Ridiculous woman. I said come and spend 24 hours with me! I know you all understand. When others look at me with the "pity" look on their face and say "I do understand... it must be hard... you are doing a great job" I want to say "No you absolutely don't, it's terrible and I didn't ever fill in an application form for this job" . My mum lived a very healthy life. She did EVERY thing she could to avoid this disease but it got her and EVERY day I am mourning the loss of my highly intelligent mother who left me when this disease took every ounce of her knowledge away. It's just her failing body I am looking after now until eventually that gives up too.
Sweetheart, that doctor's reaction is dreadful, dreadful, I am sorry. This is it, tell it how it is and the professionals often recoil. BLOWING IT OUT OF PROPORTION, dear oh dear oh dear. I know, pity is pointless and it sucks. With you all the way here. Gx
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
So sorry, Azza19. I too took on my mum without looking at the job description, the hours and the pay and no interview. I didn't want to do it but you step in when they start getting their finances and appointments muddled and before you know it all the family have taken one step backwards and you are the 'volunteer' to have her move in with you, move house to accommodate her, give up your full time job, give up your social life, etc. etc. GPs just dish out antidepressants (I refused, I was not depressed I was just bloody worn out - mentally and physically). Pity looks - ah yes, that head on one side, slight smile and meaningless drivel. On top of that, every conversation you have with anyone is punctuated at the beginning or the end by "How's your mum?" Never mind her, she doesn't know how she feels from minute to minute but very often I was just SO angry. I found a bit of black humour helped and tried to find some of the ridiculous and funny things that happened to temper the tedium, the lack of support and the sheer hard work.
Mum died a little while ago. In some ways it WAS fortunate that it was a short physical illness so she did not suffer the indignities of the end of life with dementia. She was still going to her clubs and into day care (couldn't remember it but she enjoyed it while she was there).
I will not insult you by saying you are doing a grand job - you know you are and that phrase is pretty meaningless when you are surrounded by the endless sxxt in all its forms!
Oh, I understand exactly how it is/was for you - I have been left as 24/7/365 sole carer for the dear man I live with - no real help from his family who live up country. Son came down for a few days 2 months ago, and I had 3 days away, but that was all. Just so fed up with it all. I never thought I would need counselling - but I am having it now.....
 

Rosie4u

Registered User
Jun 22, 2017
219
0
South Manchester
Oh, I understand exactly how it is/was for you - I have been left as 24/7/365 sole carer for the dear man I live with - no real help from his family who live up country. Son came down for a few days 2 months ago, and I had 3 days away, but that was all. Just so fed up with it all. I never thought I would need - but I am having it now.....
I’ve been referred for counselling as it seems my tiredness and frustration just need to be talked about to be made better. I’m not a great one for talking about stuff and I already pity the counsellor plus I find discussing the issues brings them all to the front of my mind - like poking a scar and I feel drained. Maybe it will help but a day off a week would probably do the trick! Still we keep going - my OH is a wonderful man and it’s not fair on him to have this disease :eek::eek::eek::eek::eek::eek: Now that felt better :D:D:D
 

Azza19

New member
Jun 1, 2018
4
0
Thank you for the comments. Made me feel better. Totally get what you say about counselling. Ranting here definitely helps
 

Ruby2shoes

Registered User
Jun 20, 2016
12
0
Glad to read others rants and know it’s not just me. I have just become incensed by a cover of a well known woman’s magazine which has a front cover which claims “fight dementia with food” Inside is an article which lists foods which they say helps you avoid dementia or cognitive decline. If only it were that easy! I have spent 6 years watching my Mothers decline with Alz. She was a person who ate healthily, kept active, did jigsaws, played bingo, socialised, and was a regular churchgoer. All things I have seen various times in articles which claim they will “stop” dementia!
 

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