The things people say.

[shelagh]

What are the worst things people say to you about dementia? My two horrors are:-
1. Oh everyone does that.
Yes I know they do, but not every times a day and frequently every day,
2. Nobody would ever dream you have dementia. Are you sure you have it?
Yes I am
bl,,,dy sure, I nearly set the house on fire yesterday leaving my still on, hot curling tongs covered by a piece of paper. I can't do sums anymore, It can take me ten minutes just to log onto the computer, sometimes I have to give up on trousers because I can't work out how they go on etc etc etc,
Feeling a bit Bolshie with well meaning aquaintances

 

[Sue J]

What are the worst things people say to you about dementia? My two horrors are:-
1. Oh everyone does that.
Yes I know they do, but not every times a day and frequently every day,
2. Nobody would ever dream you have dementia. Are you sure you have it?
Yes I am
bl,,,dy sure, I nearly set the house on fire yesterday leaving my still on, hot curling tongs covered by a piece of paper. I can't do sums anymore, It can take me ten minutes just to log onto the computer, sometimes I have to give up on trousers because I can't work out how they go on etc etc etc,
Feeling a bit Bolshie with well meaning aquaintances

I know just how you feel Shelagh. I gave up on trousers and blouses a long time ago!

Am struggling a lot at the moment with being bolshie to everyone

 

[TinaT]

Its good to hear your thoughts. Glad you have persevered and as a former carer, it's good to hear your frustration. Makes me understand a lot more what you are going through.

xxTinaT

 

[June 1947]

The things people say

What are the worst things people say to you about dementia? My two horrors are:-
1. Oh everyone does that.
Yes I know they do, but not every times a day and frequently every day,
2. Nobody would ever dream you have dementia. Are you sure you have it?
Yes I am
bl,,,dy sure, I nearly set the house on fire yesterday leaving my still on, hot curling tongs covered by a piece of paper. I can't do sums anymore, It can take me ten minutes just to log onto the computer, sometimes I have to give up on trousers because I can't work out how they go on etc etc etc,
Feeling a bit Bolshie with well meaning aquaintances

I have had only one response from a 'friend' (no longer) when told of my husband's Alzheimers. 'Oh, we thought he was talking gobble-de-goop last time we saw him'. Really shocked and upset by this as her father and father-in-law suffered from the same illness.
Thankfully we have moved away so no longer have to suffer this person.

 

[john51]

I agree.
Add to those
You seem almost like a normal person.
And
This one from my wife and carer who I love dearly
You can do that. You haven't deteriorated that far yet... have you?

John

 

[LadyA]

My late husband could never be told that he had Alzheimer's disease. He was so hostile to the idea of anything being "wrong " with him, his consultant felt it would be counterproductive. William KNEW he had it - but it could never be spoken of. One day when I suddenly remembered something I had meant to do earlier, William laughed gleefully, slapping the arms of his chair and said "I know what your problem is! You must be getting alzheimers disease! Ha!"

 

[shelagh]

And another one.

You can do it if you try you just won't try - husband is not dead on the floor with the bread knife through his chest but that is because I am a peaceful Quaker.

 

[BillBRNC]

I can think of nothing good that anyone has had to say to me about Alz or the overall situation. Unless you have it, you simply don't have a clue, particularly the doctors and the entire rest of the world. Even the Alz organization here in the US, as they seem to think that the caregivers are the ones with a disease worthy of being cured. Those of us with Alz are just trash waiting to be taken out to the dump. Just saying, and yes I realize I'm not in a good mood about this today.

 

[BillBRNC]

By the way, I hope nobody considered what I said above to be a knock on caregivers. It was not meant that way. Caregivers are angles. I couldn't exist without my wife being a caregiver. They deserve lots of help. My only comment is on how little attention seems to be paid to those with the disease. In fact, I feel like sometimes we are looked upon as the disease. I'll be taking a break now.

 

[john51]

Like Bill I was not knocking carers in any way. It's just sad that I can't really share and convey understanding to my wife, the person I love most in the world

 

[LadyA]

By the way, I hope nobody considered what I said above to be a knock on caregivers. It was not meant that way. Caregivers are angles. I couldn't exist without my wife being a caregiver. They deserve lots of help. My only comment is on how little attention seems to be paid to those with the disease. In fact, I feel like sometimes we are looked upon as the disease. I'll be taking a break now.

I couldn't agree more. At one stage while I was still caring for my husband, I wrote a stinker of an email to our Minister for Health at the time, and pointed out the negligence of the Government towards these most vulnerable of people - and accused the government of committing euthanasia by stealth by not providing enough support for carers, by reneging on promised funding for care and support and for research etc. I told him that the government were only interested in "investing " in those who were economically viable -where they would get a good return for their money, which they would never get from the disabled, elderly or severely Ill. But, I pointed out, the country had already had its "return " from the elderly. In advance, through and in the recession after WWII, when times were so hard, and people had nothing! And that the measure of a civilised society was in the way it cared for those who were unable to care for themselves.
My rant had stemmed from remarks made by another member of Govt to the effect that they needed to invest much more of the available resources in children - because that's where they'd get the best return.

 

[Sue J]

I couldn't agree more. At one stage while I was still caring for my husband, I wrote a stinker of an email to our Minister for Health at the time, and pointed out the negligence of the Government towards these most vulnerable of people - and accused the government of committing euthanasia by stealth by not providing enough support for carers, by reneging on promised funding for care and support and for research etc. I told him that the government were only interested in "investing " in those who were economically viable -where they would get a good return for their money, which they would never get from the disabled, elderly or severely Ill. But, I pointed out, the country had already had its "return " from the elderly. In advance, through and in the recession after WWII, when times were so hard, and people had nothing! And that the measure of a civilised society was in the way it cared for those who were unable to care for themselves.
My rant had stemmed from remarks made by another member of Govt to the effect that they needed to invest much more of the available resources in children - because that's where they'd get the best return.

I totally agree with Bill, John and Lady A, I don't even feel the powers that be think getting me any diagnosis is even worth it as evidently I can't be 'productive' anymore. How little they understand about true investment and economic viability is achieved by investing primarily in caring for people.

 

[aprilbday]

I can think of nothing good that anyone has had to say to me about Alz or the overall situation. Unless you have it, you simply don't have a clue, particularly the doctors and the entire rest of the world. Even the Alz organization here in the US, as they seem to think that the caregivers are the ones with a disease worthy of being cured. Those of us with Alz are just trash waiting to be taken out to the dump. Just saying, and yes I realize I'm not in a good mood about this today.

Bill...
I thought I was the only one that noticed that about Alz US!
It's like we -those of us living with dementia-awful name by the way, are left out. The meetings here are only for carers. It's like they do not recognize that we are all not home pacing the floors or sleeping. Many of us still work!!! We need support!
My doctor assigned me to a social worker to make sure my home was safe with stove reminders and medication organization- well all she did was call-got my email address and sent me an overwhelming list of resources for me to read about. That was 2 months ago and I still have yet to get through copied and pasted web pages on her "resources" for me.

I am happy that this site welcomes us!

 

[ossie10]

i can relate so much to all this.Some of the funnier things was,well you dont look like you got dementia,are you sure you have it? lol

keep going everyone

love ossie(nick) xx