People's reactions

[kazza73]

what has really struck me recently is the different reactions dementia/Alzheimer's gets from people.
Some people physically recoil at the mention of dementia type conditions and treat the sufferer totally differently- a bit like a leper! I hate the fact that some people have basically cut off mum and dad since mum became more obviously ill- it's as if they think they might catch it.

And yet there is the other extreme,On Saturday my husband was chatting to someone who has known my parents for a long time but hasn't seen them for ages, she asked how they were and P said that mum wasn't great and that we weren't sure exactly what's going on because dad is keeping it all to himself. The woman turned round and said "Och, it's probably just a wee bit dementia", very matter of fact as if she was talking about mum having a cold. I think this person's reaction is probably based on personal experience of someone with dementia.

 

[Shazdia]

I agree that some people have very diferent reactions to this disease. i think it's probably because they don't understand it and are afraid, people tend to shy away from things they don't understand. It maybe they are unsure on how to handle it, I must admit it worried me as to how people would react to my mother, but there are some good people out there.
My sister and I have made a point of letting people know about mum's illness and they have been great, even down to the local shop assistants and the man in the post office.
They may not know the extent of the problem but so much has been in the news lately with well known people telling there own stories that more and more people are becoming aware of how many people suffer from it.
I have also found that in a strange way telling others has relieved some of the worry for me, I didn't want people to start referring to her as that strange old lady down the road.
We can only take comfort in those people who understand and not concern ourselves with those that don't.

 

[Sam Iam]

Hi Kazza and Shazia,

Yes I have seen this reaction to with my Mum but as I used to work as a support worker for people with learning disabilities it was my job to "normalize" our clients so I fully intent to keep this up with Mum, as in we will go where we always go and smile at everyone for we have to remain who we are through out.
DONT LET THE BU**ERS GET YOU DOWN

 

[KenC]

I have come across many reactions to dementia since getting my diagnosis, and some of it was staggering.
I have lost many friends, but I suppose they simply did not understand that anyone can get dementia these days.

But I have also been to Alzheimer's Society meetings, where I have been introduced as a person with dementia and my name afterwards, which to me was worse, as they were putting the illness first and making a statement about it.

However most of the Society meetings are handled with care by people who understand and are thoughtful, so when the odd one goes astray, I just have to push it to one side, as other people usually stand up and put my side forward.

I do however think that a lot of this is just that people do not understand what they are dealing with, and are frightened of getting too close. I was once asked if dementia was contagious? I confess that I was not sure what to do or say, as I thought that the person was trying to be funny, but they genuinely thought that dementia could be caught somehow like an infection?

It does not help when we hear people saying that they have forgotten to do something that day, so they must be getting dementia. I have heard this said quite a lot these days, but the person saying it usually has a silly grin on their faces, which I confess does hurt, as they are trying to be funny at our expense.

I hope that with all the information that is coming out and all the advertising the society is getting people will start to understand this illness a little better than before.

But we must not forget that many people are affected by this illness and are involved either as a person with the illness, or their carers and family members, and these people can pass on what it is like and help those who do not understand.
There are many who understand and care about dementia and that makes up for those who really don't want to know.

One day we will all be treated the same.

Best Wishes

Ken

 

[kazza73]

Thanks Ken

It is really helpful to hear things from your point of view as I can only talk about my experiences from the point of view of a daughter of someone who has dementia.

I think it is sad that the only people who really understand are either those suffering personally or those who are carers or family members.

Hopefully the more publicity given to the disease, the more understanding the public will have. I hate the stigma that seems to go with dementia- I sometimes feel my dad is in denial about mum's condition partly because society has made him feel it is something to be ashamed of.

Thnaks Sam Iam and Shazdia- I agree, we need to get out there and educate people and not let their ignorance get us down.

Karen x

 

[jackie1]

Hi Karen,
What I also noticed was the invites out as a couple or individually also dried up very quickly. Not from everyone and luckily not from our best friends. It was so sad, but maybe I was to blame as I told everyone once we had come to terms with the diagnosis in the vain hope that they would forgive any little oddities and continue to treat him as before.

Take care
Love
Jackie
xx

 

[Canadian Joanne]

What I also noticed was the invites out as a couple or individually also dried up very quickly. Not from everyone and luckily not from our best friends. It was so sad, but maybe I was to blame as I told everyone once we had come to terms with the diagnosis in the vain hope that they would forgive any little oddities and continue to treat him as before.

No, Jackie, you are definitely not to blame. I feel very strongly that we should tell as many people as possible, so they can become aware and (hopefully) less afraid. It seems like the times years ago when mental illness and cancer were illnesses only whispered about. The various forms of dementia are just diseases also and the more we get that message out, the better, in my opinion.

 

[kazza73]

maybe I was to blame as I told everyone once we had come to terms with the diagnosis in the vain hope that they would forgive any little oddities and continue to treat him as before.

Of course you weren't to blame!

Dad is just so in denial and seems to feel the need to some extent to hide mum away, thus making himself even more isolated. They never go anywhere any more. I think it'd do them both the world of good to get out and about to familiar places and to see familiar people- mum would enjoy it I'm sure and Dad would get a chance to speak to other people for a change instead of one sided conversations with mum(I think it must be so lonely for him). I know to an extent it is dad trying to protect mum by not puting her in any situation where she wont cope (she can get a bit panicky sometimes which then makes her even more confused) but in doing this he is shutting them both away from the world and it seems to make it harder for mum when they do go anywhere because she is totally out of the habit of seeing people.

I just wish dad would be more open with people and admit what is wrong, I'm sure a lot of their friends would be very supportive and those who weren't personally I don't think are worth bothering with.

 

[Skye]

Hi Karen

Have your parents tried Alzheimer Scotland?

Our local branch runs a 'couples' support group, where the person with dementia and the primary carer -- not necessarily partner -- meet. Sometimes it's just tea and a chat, sometimes there's a guest speaker, occasionally entertainment. But it would be good for your mum and dad, and they'd meet others in the same situation. I hade some good friends through ours.

Jackie, I told everyone about John too. True friends don't disappear. As for the rest, who needs 'em?

Love,

 

[Cl13]

Hi Karen, what your describing is exactly what my sister went through when her youngest daughter was rushed into hospital with Menengitus, she said at first everyone at her school seemed to be sorry to here she was in intensive care, that is until they found out why she was there, It wasn't the chidren that treated her entire family badly, it was the parents, her husband did the school run with the older child, both children went to the same school,a very small village school, a couple of days later he parked the car as usual and walked down the street, he watched parents holding on to there children to stop them from running to
there older daughter, even went so far as to cross the street to avoid coming in contact with them, the hospital told my sister the strain her daughter had was contained within the child alone,
my sister had had a baby boy six weeks earlier, and the new baby was perfectly safe, my sister asked the school to have an assembly and to invite the parents as well, to explain that there children had nothing to fear from being near her oldest child, some were ok but other didn't believe the information at all, she was so upset she kept her away from school untill her youngest was discharged from hospital,
You can do nothing at all about peoples attitude I'm afraid, your dad just needs stick with there real friends, he'll know who they are by now, and the rest are not worth bothering about,(((((HUGS FOR YOU ALL))))) Love Lynn

 

[kazza73]

Hi Karen

Have your parents tried Alzheimer Scotland?

Our local branch runs a 'couples' support group, where the person with dementia and the primary carer -- not necessarily partner -- meet. Sometimes it's just tea and a chat, sometimes there's a guest speaker, occasionally entertainment. But it would be good for your mum and dad, and they'd meet others in the same situation. I hade some good friends through ours.

Unfortunately Dad is still in total denial so has sought no support whatsoever, he hasn't really officially told family what is wrong- just says he's coping and that things are fine (even though it is obvious to anyone who knows my mum that she is far from 'fine'!). All my sister and I have been told is that her initial scan showed significant shrinkage to the brain, possibly due to alcohol and that is it- however, we've both done a lot of research and based on mum's symptoms etc have had to come to our own conclusions as to what is wrong.
I wish he would just be open about what is wrong and talk to us about it more. Some sort of support group would be beneficial I'm sure, but until he accepts what is happening I'm not sure what more we can do.

Karen xx

 

[kazza73]

Lynn

How your sister and family were treated is shocking- people can be so ignorant and unkind sometimes.
xx

 

[gigi]

Peoples' Reactions

We recently had an invitation to a party...

Live music, dancing and a hog roast...from someone who should have known better.

I replied and politely declined the invitation..and explained the circumstances...but did invite the said person to visit his "friend" (my husband) for a coffee and a chat...

This was over a month ago...and we've heard nothing since. I'm not surprised.

I'm learning to expect nothing from anyone..(except my TP comrades...) Anything over and above that is a bonus...

Love xx

 

[BeverleyY]

We took Dad to France last weekend. He had a fantastic day on the beaches, looking at the bunkers etc.

On the ferry on the way back, he had a cup of tea. Maybe 5 times we had to remind him not too squeeze the cup too hard as it would make the tea spill... not to stand and bend over as it would make the tea spill.... and thenI noticed the woman next to him smirk, then girn.. and finally just laugh

I looked her right in the face 'he has Alzheimers' I mouthed.

She did apologise, but the damage was done.

People eh!

Beverley