Telling Others about my Alzheimer's

[carrie99]

Having finally plucked up the courage to 'come out' about my Alzheimer's - done at a friends house while having a cup of tea,
I'd be very interested how others have broached the subject. It has already made my life better and I am joining new groups.
How have others managed this?

Carrie99

 

[Vonny]

Hi Carrie,

I have no experience of "coming out" but I want to congratulate you on doing just that and for joining new groups. I take my hat off to you.

Keep ringing them bells!

Vonny xx

 

[nellbelles]

I found it difficult to tell people that I had cancer and what difficulty that caused me..

Am so pleased that you could tell your friends, I hope they give you the support you need now and in the future.

 

[Barry]

Hi Carrie,

I was diagnosed with mixed dementia and Alzheimer’s over four and a half years ago, although I realized it even before my doctor and CT scan confirmed the problem, but I did not keep it to myself and told family and friends immediately ‘head on’ as its nothing to be ashamed of its just an illness that we can learn to live with by making some adjustment to our way of life, and your right to keep as active as you can with hobbies of any type, all though hand bell ringing would send me into complete confusion now as I would not know bell to ring the left or right!

The big thing to remember is that you’re not alone with this illness and that here on TP you will find a lot of friends in the same situation, so just keep tolling your bells as long as you can.

Barry

 

[KenC]

Hi Carrie

Its amazing the reaction we get from some people these days , when we tell them about this illness, as many do not understand the basics of it and still wrongly assume that it is contagious.

It is also times like this when we find out who our true friends are, as I lost some shortly after my diagnosis, partly because of the stigma and also because they simply did not under stand what this illness was.

There are also times when people come up and ask if I really have some thing wrong with me because I look fine. I do wonder if they mean look normal? but they can not bring themselves to come out with it.

We are all normal people, its just that our brain has decided to do its own thing, which causes us distress at the time. But I suppose it is easier to spot a someone with a broken leg that it is to spot someone with Dementia.

Having said that many people would rather say that they have Alzheimer's Disease, than admit that they have Dementia, however that is their choice and like it or not they are till saying that they have this illness, which ever term makes it that bit easier.

I do think it is wise to get it over with as early as possible as it it becomes harder later on.

You are doing well Carrie and Barry, so keep up the good work and keep posting as it is nice to hear how other people cope with this illness.

Best Wishes

Ken

 

[Countryboy]

reply to Carrie

Hi Carrie

I was diagnosed with Alzheimer’s in 2000 aged 57 had to inform Employer
DVLA Insurance Constabulary (Re; Gun Licence) like Ken.C majority of work
colleagues and ordinary people in the street had no idea that I had an illness at time I wondered myself until my first MRI brain scan 2003 and a second in 2004 which showed damage to my Front Temporal Lobes unfortunately with the lobe damage I can get verbally aggressive with lots of swearing but ok if left alone and not drawn into any conflict, the down side unless your dealing with someone who has or had a connection with someone with dementia your on a looser the police took away my Gun Licence Dvla only give me a driving licence for 12 months at a time. So if I knew in 2000 what I know now I wouldn’t have told anyone. I did stay at work until I was 65 but I was covered under the disability discrimination act

Tony

 

[KenC]

Hi Tony

I think you were very lucky when you were allowed to stay at work, as my working days ended on diagnosis as it was thought that I was unable to do my job, but it was also considered too dangerous to have me as an engineer, and after that I got no support what so ever from the University.

I have heard of others being dropped by the masons, but I also know others who are still active members so I suppose it depends where you live, as to how you are treated" just like the NHS", WRONG BUT IT HAPPENS.

However not telling anyone including the services, could lead to major problems as you could be classed as un-insurable and therefore liable for any actions you take. But we are all different and go through this with little or no advise from anyone outside, who really knows what the illness is like to live with as they do not have that personal experience, so we have to make our own judgements as we go along.

The DVLA has allowed me my licence back on a 12 monthly basis, which I can cope with, as I understand that things will change in the future, but I only drive if I feel totally up to it.

Unlike a person I know who needs someone with him at all times to tell him which way to turn. I do feel that this is going too far, but thats only my opinion and I would not attempt to force my opinion on anyone else.

We all do our best, to live with something we did not ask for and it is not self inflicted, but thats life.


Ken

 

[Countryboy]

Reply to Ken

Hi Ken Hope you keeping well.
I agree with you from the first day I was told I had Alzheimer’s it didn’t
bother me at all if fact I didn’t have any idea what Alzheimer’s was if the Consultant had said dementia I would have, of course as you know the your advised by the Consultants to inform DVLA which I did ok I was granted a licence on a 12 month basis starting in 2000 I have just sent of the completed forms last week which will be my tenth driving licence I write to DVLA every year and ask if someone from the medical board would phone me they don’t with computer systems we have it wouldn’t be difficult for them to find out that I have three vehicles registered all insured (no insurance claims) yet they the medical board seems to put all dementia people in the same category but Ken as you know were not the same, although I retired from full employment 14 months ago still keep going every one week a month I drive 45 minutes in the morning to start work at 7.am and leave at about 2.45pm for the return journey before the school children are let out the point I was making is because I can still carry on a normal life what was the point of telling these people of my illness, unless its because I shout and swear a lot loudly, by the way thats why the masons excluded me, by the way I only shout and swear when in conflict and then can’t find the correct words
as I said before by biggest mistake was telling them

cheers Tony

 

[KenC]

Hi Tony,

I think the main thing that has come out of this is, there is a total lack of understanding in many areas, especially where the officials are concerned.

However to get out of this, we need to re-educate the general public and all the services, so that everyone understands what this illness is, while at the same time explaining that we, like everyone else are human, yes we make mistakes like every one else, but we have a reason for doing this, but its not deliberate as many think.

Its not an excuse for making mistakes, just a fact that our brain sometimes does things which is not normal.

I admire that fact that you are still able to work and that is a very good thing for all concerned.

I have got into trouble on a few occasions with my wife, for shouting when I thought I was speaking normally, but this is when I get agitated because I can not find the correct words to explain something.

One of these days we may get everyone to understand what this illness is, and what it is like to live with it.


Keep Posting because you are doing a good job.

Ken

 

[carrie99]

Handbell ringing

Just come back from my first handbell ringing session. Although I was either just 'dinging' or 'donging' and I have a degree in music I was completely at sea and extremely embarassed as I couldn't get the dings and dongs right!

I just thought I was being stupid, and then a light came on - I have Alzheimers!! LOL

Carrie

 

[Helen33]

Hello Carrie

Were there many people in the class Carrie? Your post made me wonder whether you will persevere because a degree in music wouldn't equip you for immediately being proficient in a new instrument Yes you have alzheimers but you are also there to learn

My coordination is dreadful so I doubt I would be any good

Love

 

[julieann15]

dangly bits?

Hi Carrie

I have had a go at bell ringing- may have Grade 7 Cornet and Grade 6 Bassoon but I have no coordination with the dings and dongs

The things that make the noise on the bell have a mind of their own-does anyone know what they are called- the dangly bits in bells? (that sounds awfully rude but not meant to be)

Julie xx

 

[CYN]

a clanger

Julie i think you have dropped a CLANGER

Cynthia x x

 

[CYN]

i googled it and the real name is a clapper.

Cynthia x x