Hello Nat

I think it is easier for people to believe it, when they say `s/he was `away with the fairies.`

 

Hi, I can't stand comments like that. One of my friends mothers said that of all the illnesses that exist, Alzheimers must be the best one to have as you're oblivious to what you're going through. I found it so insensitive and was utterly speechless... people have no idea

 

Makes you want to warmly grab them around the throat whilst you explain to them about dementia doesn't it!!! I'd never be able to hold my tongue or temper if I heard such comments.

Sue

 

Hi Nat

I don't think that there is an eeasy way to go when you suffer from a terminal illness. I watched my Dad fade over 5 years physically from cancer and have watched my Mum change in front of my eyes with VAD over the last decade until her death 11 weeks ago today.

I would say that my Mum had little pain, no insight and complete acceptance of her death when her time came whereas my Dad had immense pain, and understood his loss of quality of life and, the last few hours at his deathbed were torturous.

For me both experiences were extremely painful but if asked, if and this is a big if, I had to choose between the two I think that I would choose my Mum's last years, but that is only because she had good care and was mostly very settled and mostly replied that she was happy. However I know of others in the NH who cried, shook and generally were really really unhappy. Then I think I would prefer insight.

Mostly though I wish for a speedy death with no goodbyes and to ensure that I am on good terms with my family all the time, so there is little pain for me and "clean" grief for them.

For me the journey I have taken with my parents has seen me look at things in a different way and I think has made me grow up.

Your workmates, well, maybe they have just not reached the level of understanding that close proximity to the illness gives us.

Mameeskye

 

hey nat

I would rather have cancer than dementia
quality of life issues
medics recognise cancer but not alz
given the outcomes....
still smoking,
Jo
but trying to give up
I hate alz dementia jokes
no one jokes about cancer, hopefully

 

well said .

I would also want that , rather then a dementia or a cancer

 

It sure does.

Jo, I agree 100%.

Nobody does joke about cancer. For myself, I'd like to go like my father did, dancing until 2 o'clock in the morning 2 days before he died. He went in his sleep and as far as the autopsy's findings show, he might have had 5 or 10 minutes of distress. Might - not certain.

Otherwise I think I would choose cancer. I would rather be aware and be myself. I watched my favourite aunt die of cancer. She fought the disease for 10 years. Most of those years were reasonably good and she had a good quality of life. It really was only the last few months that got bad. Even so, she was at home except for the last day of her life. Less than 24 hours before she died, we spoke on the phone & she was herself.

I understand your choice, Mameeskye, but I would hate to become like my mother. She has had such a violent, aggressive and generally unpleasant disease progress. Even now, confined to a wheelchair for nearly 2 years, she's still hell on wheels. All I want is for her to be as happy as she can be but that's not the case.

With any luck, I'll take after Dad.

 

Oh my goodness, yes! That is what I hope for too.

Cancer and AD are equally horrific to me.

 

I remember when Ronald Reagan was shown on television 'fluffing his words' ...... to many (especially his political opponents) it might have been vaguely amusing ... I recall it being uncomfortable that he was being made a mockery .. (long before I had any real awareness of dementia and how it might affect people's lives) .....

The trouble is with public portrayal of this disease (IMHO) is that once the 'early stages' are gone (which can be almost comical - in a tragi-funny way - goodness knows how many laughs I have had with mum and how many times she has been able to laugh at herself) the sufferer - especially of celebrity status - is no longer in the public gaze (rightly so to preserve their dignity) so the 'general masses' will always remain uneducated about what dementia is all about - and not merely 'a bit of forgetfulness' - until the day they have it happen in their own small circle .....

And I include myself, ashamed, as one of them previously ........

Love, Karen, x

 

Oh good grief!! I don't think her mum can really have had dementia - I can't believe anyone would say something so ludicrous.

I'd be tempted to send a recording of my mum screaming and wailing for hours on end to anyone who thought that.

Someone at work said something similar to me and everyone just fell silent - it's never been mentioned since.

I was actually more annoyed with my aunt who at mum's birthday party said "I bet I've got dementia, my memory is terrible just now" - well how incredibly insensitive..

But these people are everywhere - what can you do about it?

 

Since I'm not allowed to slap these people, education will have to be the key. Yes, I agree that celebrities & famous people are kept out of the limelight. But more and more people are making short films, documentaries etc to show the real faces of Alzheimer's. I myself have a tendency to go on and on and educate my co-workers and anyone who has the misfortune to run into me.

 

I must admit I've become a bit of a dementia "bore" - I can't help it - it's been a tabboo subject for too long and for no good reason.

I think in the last month when people ask "How's your mum" I've stopped saying "Oh you know.." so they don't feel uncomfortable - things will never change until everyone understands that dementia is not an old lady sat in a corner with a slightly vacant expression, smiling serenely.

I'll admit I'm sure it's what I'd have thought before this happened to mum but that's no reason to let it continue if only so that people understand what my dad's life is like and can start to make allowances for him instead of expecting him to be able to live life as he did before and do things he did for them before.

 

My dad died 10 years ago he had heart problems but in the end died suddenly. My mam is in the end stages of vascular dementia and i said to someone at work that although my dad's death was hard watching my mam deteriote the way she has is much much harder. She said that at least with your mam you have time to spend with her and prepare yourself for her death. How can you do that when the person you love is gone from you already It is so obvious that people who have not experienced this have no idea what it is like.

My biggest wish now although i feel guilty saying it is for my mam to go quickly and peacefully so she doesn't have to suffer any more torment.

Love
barbara h

 

The many faces of dementia...

Chipping in with my twopennorth.....

Until my husband had AD I never in my wildest dreams realised how totally eroding the disease is..not just for the sufferer..but the carer too.
Public awareness of Cancer..(can you remember how it was talked about as "The big C"..in hushed tones not so long ago?)
and heart disease has increased dramatically ove the last few years.

There are innovations and new treatments..so there is always hope.

Sadly Dementia is discovered too late..there is no known cure..and it has had a less positive press.

My belief is that only by education and raising public awareness will the old myths be destroyed..and the reality of the disease will be better understood and tolerated.
Like Kate..I too have become a dementia bore..if people ask and want to hear..I tell them how it is..
Mostly they don't want to know....
My husbands old golfing buddies no longer visit him.
Our circle of friends is reduced to a few faithful female friends of my own..and some old and loyal couples who have known Eric for many years..
For these I am thankful.

Finally..an old family friend at my husband's sister's funeral a couple of weeks ago commented that it was such a shame to see to see my husband as he was...and asked what was the matter with him.I told her he had Alzheimers...Her reply..

" Oh..such a shame..will he get better..?"

I rest my case!!!!..(Sorry..I've gone on a bit..better out than in...)

Love gigi xx

 

that reminds me of the time I told my MIL my mum had been diagnosed with ALZ and prescribed aricept..
her reply,
"oh well, we all have a bit of memory loss when we get older, dont worry about it"
grrr......
Jo

 

It's such a cruel disease .... to watch someone close to you slowly wander away. You can see them and you can hear them, but over time it's not the same person. Their personality changes, they don't know you, one minute agression and the next mourning for parents who died over 30 years ago.

Unless someone has experienced caring for a loved one with ALZ they can't really understand what it's like. Even when they do understand, they sometimes cannot deal with it emotionally. My son loves his grandad to bits, but finds it all so hard.

 

...Doesn't it amaze you? I mean that here we have a disease that is by standards very common, but pushede under the rug. I am so sorry that peoiple are insensitive. Wish I could change them. But I can't. WIsh I could change everyone, but I can't. I'm not God.

I can however, educate. I see those of you on here working toward a solution in healthcare. I see those of you getting upset at boorish people. People are going to always make jokes. Some people COPE by making jokes. I don't appreciate the jokes...but I do know that when someone is making an off the cuff comment and they are ridiculed they will remember. I do know that being an AD caregiver is VERY hard. It is an emotional rollercoaster. Not for the AD patient, who has already forgot most of his/her life. NOt for the AD patient who is asking a question one minute then asking it again in 5 minutes. The rollercoaster ride is for the caregiver! I lisstened to several of those jokes through the years. Some I laughed at some I did not. I chose not too, because I knew I might need that person someday. To go off on someone because of a joke just doesn't seem right. I wonder how many jokes we have told at the expense of others? I mean are we hipocrates?

I'm not trying to upset anyone...I'm trying to make everyone understand that the only way we are going to battle AZ is to let it be the but of jokes. There are very proper times to bring up the distress of AD. Those that joke also have sympathetic tones and they will listen better when they have not had "a new one torn into them".

I don't know how many people I know have told jokes about something then gone and supported the same cause. MY mother died what I would call the cruelest death on earth and after her death and a final autopsy her death certificate will say "natural causes aided by Alzheimers". I watched that death and I cared for her in MY HOME. I will not let that happen to one of my children, if I can help it....and if that means that I have to listen to boorish jokes. I will, because I will be hitting that person up for donations to a charity that is dear to my heart. Alzheimers has taught us patience...now let us use it to divide and conquer this disease.


HUGS

Nancy

 

I see where you're coming from...

Hello Nancy,

I do understand what you're saying...

It's such a wide area for discussion..jokes I can and have taken..
I'm not unduly sensitive..I can laugh..I hope..at myself...

When one of my husband's closest friends heard about the AD diagnosis..and how our life was "reduced"..his comments to me were...
"just think..he'll wake up with a different woman every morning"
"you can give him the same meal every night and he won't know the difference"
"you only need one video because he won't know he's seen it before"..

I don't mind humour..but this was ignorant..and is probably typical of the generation which my husband is now in...
I didn't..and still don't ..take offence..
They don't know..
This particular "friend" has type 2 diabetes..and he's very willing to give us a blow by blow account of his diet/lifestyle changes..blah blah blah..

Again I rest my case...
Ignorance is bliss..until it hits you...

Love gigi xx

ps..So called "friend"..in spite of being invited to visit..has not seen my husband since October last year....