When dealing with dementia is easy??

citybythesea

Registered User
Mar 23, 2008
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coast of texas
Gigi,

I see where all of you are coming from.....I think that in a way being so close to it makes us all the more aware. It is pitiful that people do not acknowledge correctly what is going on in this world. (Your friends joke on the meal, became a running private joke at my house. Never said in front of mom, but she actually got to the point for awhile where the only food I could get her to eat was the same meal every time! Breakfast, lunch, dinner)

I too agree it is pathetic when someone is more than willing to run down their ailments point by point but then totally ignore others. I call it self-centered and unfortunately there are a lot of those people in the world. (Have you ever seen a self-centered person actually take care of someone else?.....)

Before mom passed she had lots of friends who could not come to see her and then she had those who would not come to see her. Her funeral was quite small as that no one that would not come to see her were there. I had one woman flat out tell me.."I could not bear to see the woman who KNew me not know me."....(Hello? She was already dead! If she had acknowledged you there, I would most certainly not be here!) I just plain do not think people engage brain all the time...it's more of a open mouth say what your gonna say then pray you don't put your foot in your mouth type of world most people live in.



HUGS


Nancy


PS...My list has been growing daily as to who I will hit up for money when it comes to this charity drive.!:):D
 

Kandi

Registered User
Jul 3, 2007
9
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Adelaide, Australia
Cooooeeee Nat,
A close family friend passed away this week. She had alzheimers.Her last two years have been filled with pain and discomfort. I still find that my closest friends still don't understand the constant grief cycle I go through with my folks. I really do find that peolple who have experienced dementia in their family, understand me. I often am filled with rage and frustration. Keep well. Cheers Kandi
 

gigi

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Nov 16, 2007
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East Midlands
Hello again,

Nancy..I'm so pleased we're having this discussion...

Hopefully others will join in.....

You say...
...it's more of a open mouth say what your gonna say then pray you don't put your foot in your mouth type of world most people live in.

My own experience of our life is that people here..and I speak about a select few...care only about themselves.
They are victims of divorce,estranged families,money rules ok..(?????)

And they are now concerned about their own futures..and realising their own mortality..I can say this because i am looking at it through my own eyes...being 16 years younger than my husband and his peers...They had it all..success in life/business/ money/travel/fashion...I met my husband after his first wife had died...and am picking up the pieces.Pity and sympathy I do not want. I am, however, disgusted that my husband's generation see dementia as a "no-go area"

Suddenly it all comes home to roost...it could be them...

I'd better stop...I could go on about this all night...they lived the life...

Now they reap the whirlwind..

Oh dear...I sound like the harbinger of doom...don't mean to..

We just need to wake up to the fact that real life awaits us all...

Love gigi xx
 

LIZ50

Registered User
Mar 23, 2008
56
0
Hampshire
Insensitive, ignorant or just plain stupid?

It really is an debatable illness isn't it? People joke about it because they are ignorant as to what really goes on behind closed doors and the saying 'the lights are on but there's nobody home' applies to the general public who open their mouth before engaging their brain.
Two weeks ago was Mum's funeral and one person (who had never even seen Mum with her dementia) said ' oh it's a blessing really as she never had any quality of life!' Hello!! how do you know? Needless to say I politely but firmly corrected her as Mum was fortunate to maintain a good quality of life till the end. Another person said 'At least you can get on with your life now Liz instead of having to look after your Mum all the time and repeating yourself 'cos she was hard work wasn't she?' Yeah, ok it was hard work but rewarding at the same time and even Mum and I shared a few jokes about dementia but that was between the two of us.
Thank goodness for TP and my carers/ bereavement group where at least I find caring genuine people who understand exactly what it's like.
Love Liz xx
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
My own experience of our life is that people here..and I speak about a select few...care only about themselves.
They are victims of divorce,estranged families,money rules ok..(?????)

Gigi, I read that paragraph and agree with it entirely. Then I read the next one, and had to catch my breath. It's the complete opposite of what I expected you to say.

...They had it all..success in life/business/ money/travel/fashion...I met my husband after his first wife had died...and am picking up the pieces.Pity and sympathy I do not want. I am, however, disgusted that my husband's generation see dementia as a "no-go area"

You see, I am one of Eric's generation, and the views you ascribe are the complete opposite of my experience. Yes, we've had success, travel etc, but hardly any of my acquaintance are divorced, many are caring for a spouse, and all have been supportive and willing to listen. Our success simply means that we have to pay for the care others get free.

To me it's the next generation who are uncaring, often with no commitment to family, and not wanting to know about a disease they see as a product of old age.

I know that's a generalisation, and I am not referring to any of our members on TP. I know how much you care, and what sacrifuces you have to make, But how many of your generation are bearing the full brunt of caring, because siblings don't want to know?

I'm not wanting an argument, or to offend anyone. I just find it interesting that the generations have such different views of each other.
 

twinone

Registered User
May 19, 2008
269
0
england
getting on with your life

I have had people say to me 'at least you can get on with your life now' -- not so easy. How can anyone who has not loved and cared for someone with this illness understand the heartbreak of the person you love dying inch by inch.

I know that I find it very hard to get on with my life. I think that you grieve twice, once for the person they where before the illness and the second time for the person who was ill.

I know Steve's illness was very rapid and I didn't have much time to come to terms with it, I dont know which is worse, to go fast or to progress slowly over years. One thing I do know is that it is heartbreaking all the way. I have read alot of your stories and am amazed how you have all coped for so long. (but I would gladly have Steve back even if i had to do it all again).

Even at Steve's funeral I had people say to me ' he didnt look ill the last time I saw him' or 'you was lucky it was so quick'. I wonder if they would feel the same way if it happend to them.

I know that it will take me a long time to get over it all, I sometimes say out loud ' what happened to you Steve'(hope you all dont think I am going mad)'

I know what type of illness I would rather have and its not this bl---y awfyk disease.

Sorry for the long message but couldnt stop once I got started.

Will keep reading all your messages and worry with you all as I know how tiring and stressful it is.

Lots of love
Janet
 

Skye

Registered User
Aug 29, 2006
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SW Scotland
Dear Janet

Thank you for your post. It means a lot, because I know how much you are still grieving.

(hope you all dont think I am going mad)'

No, i don't think you're going mad. Steve is still with you in your heart, and always will be. What could be more natural than to talk to him?

Will keep reading all your messages and worry with you all as I know how tiring and stressful it is.

I'm glad you're staying with us.

Love,
 

jc141265

Registered User
Sep 16, 2005
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Australia
After reading all the following posts to my thread starter, I now feel justified in my head shaking (all the way on my drive home after hearing the comments I did).
I hate the comments regarding 'at least you get time to say goodbye and prepare yourself for their death' because I feel like I've never had a chance to say goodbye and even now after 11yrs I still don't think I'll be ready for his death, I just don't want him to go, too miss him sooo much and yet still have him here for years and years, it just hurts and hurts, but I don't want it to end, I just want him back.
I regularly dream about Dad being better (I did again last night) and I usually wake up miserable to realise its not true, this morning I woke up angry?? I just want him back. But in my dream last night he recovered and then promptly clarified that he never loved my mother and was going to go away with some other woman basically abandoning his family. In a way I think this disease has made me more attached to Dad than I ever would have been, to want someone for so long just to come back, just for a day...yet to struggle at the same time to remember who they were originally, it becomes almost like an obsession. To have them so close but yet out of reach. No longer knowing if your memories of who they were are real, or things you have now made up.
As usual Tender Face you said exactly the words I feel...and cooee to you too Kandi, sorry I have been awol for so long my life has been a tad complicated of late. As for the cigarette smoking mentioned in one of the posts, I too am chuffing away almost as if I have a death wish, or because I feel that I would prefer to be to blame for my own death than to get something I had no control over...I too am trying to quit however...Last but not least the comment on how nobody jokes about cancer I think really hit the nail on the head. Everyone knows its not acceptable to make jokes about cancer, so I think its about time that it became clear to society that joking about dementia is not alright. I totally believe in humour, and how it can help us cope in tough times but thats just it, if you are not going through the dealing with the disease yourself, jokes about it should be kept to yourself.
 

EllieS

Registered User
Aug 23, 2005
170
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SOMERSET
Ignorance Is Bliss

Wish I was ignorant!

and in a way I'm glad the jokers are ignorant - wouldn't wish this on anyone

Ellie
 

jane@hotmail

Registered User
Mar 13, 2008
49
0
Bedfordshire
This is a very difficult subject with very different opinions from you all. I have experienced this sort of thing most of my life.

My sister was born prematurely and has cerebal palsy. Cerabal palsy is the P C name for what was known as 'spastic'. I could go on for ever about the bullying, the unkind comments she endured daily as she grew up. For some reason, poeple thought she must be mentally retarded as well as physically disabled.
From a young age I tried to point out that jokes and calling poeple 'spastics' wasn't infact that funny. Things have changed alot since then and poeple are more knowledgeable about my sisters disability and I would be shocked if I heard insults now because poeple are generally more understanding.

My godson, at 6 weeks, contracted meningitus which left him physically and mentally disabled as well as blind.........Many friends, who were genuinely upset for my best friend and her husband, said to me, ''It would have been kinder if he'd have died''....Infact 19 years on and their life has been enriched by him and so has everyones that knows him......

In any situation, there are friends that have no knowledge of that illness or the circumstances and I believe that most poeple make these comments with good intentions, but with their lack of understanding, they can come across as insensitive etc etc.

I do not know about every illness, I only know about the ones that have touched my life in one way or another. But, I'm very aware that if I come across an old friend that has an illness I no nothing about, in my attempt to find out more or offer some kind of comfort, I may well say something they see as inappropriate.

I hope you understand the piont I'm trying to put across, and yes, these people are ignorant, but aren't we all about some things?
 
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citybythesea

Registered User
Mar 23, 2008
632
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coast of texas
To every generation...

We all have self centered arrogant idiots in Every generation. It may be that the two generations had a better chance at rising above, but that is not the only precursor to the self-cntered attitude. My brother is fighting with himself over how he was toward mom all his life and to top off is having to face his own possible diagnosis of AD:eek:. Saying my prayers.

I think that life just catches everyone by surprise and some are not strong enough to face a diagnosis so terminal. I"ve read the posts and I know that some of you have gone the long distance. I shudder to think how long that distance was for some or how short it may have been. I wonder sometimes if there is a post in that itself. I know that there are those of you out there going the distance and wondering and I just wonder if knowing the "long haul truth" could or would help anyone.

I do want to touch on the cancer thing. Maybe the UK is still a little more civilized..we have the cancer jokes and we have the "spaz" jokes along with the AD jokes done by some very talented commediennes. These commediennes also put their work to work for the causes. LIke I said a time and a place. I do agree with the ignorant attitude and I think how lucky they have not had to face it. I would not wish it on anyone. Even the person I most despised in this world.

LOng wined again, sorry.


HUGS

Nancy



PS...Gigi, I hope that perhaps one of his buddies may realize or a wife may help to realize what is going on.....in the meantime I know they are extremely happy to have such a carring woman as the wife of their dear golf buddy (oh, and by the way, I do think the male species is the weaker minded sex....and I call exception to a few of you [men] here in TP:D)
 

zonkjonk

Registered User
Mar 1, 2007
290
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Melbourne, Australia
hey nat , that was me saying "no one jokes about cancer"
but in fact they do..have you ever watched any cheap crass comedy talk shows in oz.
I would like to say no one jokes about suicide...but they do.
may be I am easily offended
anyway, given that alz is a progressive, terminal brain disease, I see no reason to joke.
given what alz does to sufferers, I see no reason to joke.
I too, have co workers that joke about having an alz "moment"
but, when I have them, I refer to my "blonde moment"
the sooner the media and general population stop joking about dementia, the better
Jo
(I even find offence in "mother & son" ruth cracknell?)
 

jc141265

Registered User
Sep 16, 2005
836
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49
Australia
Hmmm must have missed the cheap crass comedy shows....I would say maybe I don't notice jokes about cancer and notice the ones about AD because AD is what is effecting my life, but then as I had 6 aunts and uncles die from cancer, a cousin, my mother had cancer but survived and I have had my own cancer scare, I can't explain why I haven't heard/noticed the cancer jokes...
Maybe its because cancer jokes don't make the sufferers sound like fools?? (But I don't know, because I can't recall any cancer jokes I've heard??)
Reading the posts on here I acknowledge that the jokes can be forgiven to a certain extent, because people are not usually intentionally trying to hurt...and I don't think its the jokes as such that for me upset...I can actually see the humour in some of them...if its not happening to you. I think though that the thing that is upsetting with the jokes is that it brings home again the fact that there is very little understanding out there of what this disease really is. Like some people have mentioned, the truths of this disease are very often not seen, and so far even though I have noticed that there are more close-up real stories being produced of dementia sufferers these days...I have yet to see one capture the true horrors, the ones I have seen are always kind of accepting in the end...I want to see one that says this isn't good enough and we need a cure for this damn disease! But then maybe I am not watching enough tv, seeing as I have also missed the cancer jokes...
 

Tender Face

Account Closed
Mar 14, 2006
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NW England
....seeing as I have also missed the cancer jokes...

I can honestly say - with a huge 'affliction' of cancer throughout my family for a long time - I can't recall ever a joke about cancer ...... on UK TV or anywhere .... 'cause if I had I know it would have touched such a nerve I would have gone ballistic! :rolleyes:

My thoughts? People are aware of what a cruel disease cancer is and know better not to joke about it ... which I think is the point here? If people really knew the truth about dementia it would not be the butt of jokes .....

Love, Karen, x
 

Splat88

Registered User
Jul 13, 2005
176
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Essex
I suppose it depends on how you are and whether they mean you dealing with it, or being the person with dementia.
I know MIL has not much stress in her life because she's quite oblivious to the fact that its anything other than old age. From her point of view, depending on how fast it progresses and if I've learnt anything from others on this site, it can be very quick to almost indefinite, she is better now than she was for the thirteen years she was on her own following the death of my hubbies step father.
So, as she is perfectly safe living with us, with constant company, and no obvious deterioration over the last 5 years, it would be much better than most. Mind you, it would be a secondary reason other than dementia itself, and I am well aware how fast deterioration can occur.Certainly better than my Dad who died after his third stroke, with each one making him less able, and my own mum, who died a painful death from an aeschemic bowel after stopping warfarin.
Horses for courses, and humour these days is very cruel, look how quickly the sick jokes arrive after a famous death.
 

jc141265

Registered User
Sep 16, 2005
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Australia
Maybe thats the problem, because dementias can be very different...Dad's dementia has been somewhat akin to him having strokes although he doesn't have strokes, as he has lost abilities, eating, talking, shaving, showering, toileting, standing up on his own, consciously knowing how to sit down...and in his case he does seem to be aware of and angry about losing his physical capabilities and ability to rely upon his mind to help him. There has been no forgetfulness, or reminiscing on the past for him, it has just been a constant disabling of him for 11yrs, and at 64, he and his family don't think its very funny!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
No Nat, there is absolutely nothing to be found funny or amusing about the slow torturous decline your father and his family have had to endure.
He is still two years younger than I am.
Love xx
 

Splat88

Registered User
Jul 13, 2005
176
0
Essex
I suppose thats the most difficult thing, no one has the same experience, and why its so important to be tolerant of others especially if like me you " have it easy" for the moment at least.

I would love to know what makes the difference in the rate of deterioration, lucidity etc. Mind you, I expect the doctors would too!!

Its obviously not just time, MIL has had this for at least 8 years to my knowledge, without the gradual decline before, that we put down to eccentricity and widowhood.

Maybe it was the Aricept, started 6 years ago, but as she's 86, it it really that? Or, is she just very resilient? The $64,000 question!
 

Skye

Registered User
Aug 29, 2006
17,000
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SW Scotland
I would love to know what makes the difference in the rate of deterioration, lucidity etc. Mind you, I expect the doctors would too!!

Its obviously not just time, MIL has had this for at least 8 years to my knowledge, without the gradual decline before, that we put down to eccentricity and widowhood.

Maybe it was the Aricept, started 6 years ago, but as she's 86, it it really that? Or, is she just very resilient? The $64,000 question!


I think it's more to do with what kind of dementia it is. John also had a very slow rate of decline for the first seven years, and I put that down to being started on reminyl from day one. Then he dad a very sudden and disastrous decline, leaving him unable to stand, talk, feed himself, and doubly incontinent, though physically still very fit.

The result of a UTI -- but was it going to happen anyway?:confused:
 

KenC

Registered User
Mar 24, 2006
913
0
Co Durham
Hi again,

One thing that I really get annoyed about is when I am talking to people I know, and then someone comes up and say's that they must have dementia or Alzheimers because they are always forgetting things. When I was younger I was always forgetting things, but not to this degree.
I really do not understand what they think they are doing, because to me they are taking the mickey out of the illness and that is wrong. If they really had problems like this they would not know what had hit them. I really do think that people need to be re-educated about these illness and then they would not be so stupid. The thing that makes this worse is that these people have never experienced dementia in their families otherwise they would be more sensitive and think about what they are saying.
Another comment that hurts is when someone says that I look alright and they do not think I have dementia. What should a person with dementia look like? There are times when I am lost for words, but I am not the only one as we are all going through this either as a person with the illness or their carers.

Best Wishes

Ken