Young Onset information

[Brucie]

Can I point members at a thread elsewhere in TP?

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?p=186104#post186104

A link to a conference in Australia http://www.alzheimers.org.au/content.cfm?topicid=55 contains some excellent documents about Young Onset dementia. Oz seems to have a knack of being able to produce outstanding literature of this type.

In particular I liked:

• In our own words - Younger Onset Dementia
• Younger Onset Dementia - A Practical Guide
• Help Sheet - What is younger onset dementia?
• Help Sheet - Early planning - Younger onset dementia
• Help Sheet - About You - Making employment decisions
• Help Sheet - Employment - Younger onset dementia
• Exploring the needs of younger people with dementia in Australia
• Long & Lonely Road
• Understanding Younger Onset Dementia

I recommend visiting the site and viewing the documents.

 

[Grannie G]

Good morning Bruce.

Can this be made Sticky in the Younger Section.

I have only dipped in and will want to return to it.

I particularly identified with `The long and lonely road` which I`m sure will be appreciated by many.

 

[Brucie]

Good idea - I've done that.

Bear in mind that the web site for the conference may not always be there. I've saved off the documents I found personally useful.

The 'in our own words' document is similar to the one you mentioned, and equally useful.

 

[Norrms]

Younger Dementia

Hi Brucie, thank you for posting the web site from Australia about younger dementia. It was so interesting. i am a demetia sufferer who was diagnosed some months ago with early onset AD at the age of 51, yet i feel so guilty sometimes when i read the threads about how other people are having such a hard time and yet, somedays i can quite happily be on the computer for an hour or so! I have read what is going to happen to me and to be honest it frightens me to death but at the moment i dont think i`m anywhere near as bad as somepeoples husbands/parteners, is that why i feel so gulity ?? It has me thinking if i am worthy to be on here? Have you any threads where people have just been diagnosed and they tell their stories before they get a lot worse ?? Hope you dont mind me asking, Norrms and family

 

[christine_batch]

Dear Norrms,

Your imput is so important so please do not feel guilty.

Young Onset information is so important for so many people as it is on the increase.

My husband was 57 when he was diagnoised and at the time there was no facilities for the under 65's.

Thankfully, it has improved in my area.

Best wishes
Christine

 

[Norrms]

Thank you

Thank you Christine, its just when i read about the awful things some of you are going through, and i know i will have to go through the same thing eventually,be looked after, cared for, when ?? No one knows, and that uncetainty has on edge so much. I`m quite obviosly not as bad yet as those whose wives/ husbands/ care workers write about and i just didnt want anyone thinking i shouldnt be on here, or is that my illness bringing on the doubt and loss of self confidence ??I really dont know, best wishes, Norrms and family

 

[Bookworm]

Real age?

thanks for this link Bruce - very interesting. One of the things that has been particularly difficult for me is that although my husband is 70 and does not qualify to be called "young onset" - he was, until about 1 year ago, incredibly young for his age - appearing as max 60, maybe less. So apart from mourning some of the aspects of our lives and his communication and other things, I've lost my young companion as now I'd put his age now as being much much older than 70. So I suppose I wonder about the 65 age limit for "young". He is still trying to get his research done, publish papers, attend conferences - and my heart breaks for what he already sees as the incompleteness of his life's work. Thankfully we have no contracts for his research at present as that would be a nightmare.

 

[Bookworm]

.......i just didnt want anyone thinking i shouldnt be on here.....

It is really great to have you here - my husband would be good here too but he just does not have your insight and so I don't suppose he will come - maybe I'll tell him you are here

 

[sad nell]

Norms we need you and your insight and great sensce of humour, more stories please Pam

 

[Norrms]

Hi

thank you eveybody, Norrms xx

 

[Norrms]

It is really great to have you here - my husband would be good here too but he just does not have your insight and so I don't suppose he will come - maybe I'll tell him you are here

If it helps, please do, Norrms xx

 

[Sandy]

Hi Norms and Sue(bookworm),

The more people who can contribute to Talking Point, the better .

Can I also mention that there is another part of the Alzheimer's Society web site that accepts contributions of stories, poems, etc from people with dementia.

It is called Alzheimer's Forum and it can be found here:

http://www.alzheimersforum.org/site/index.php

It's not really a forum in the way that Talking Point is - it's not an online discussion board. It describes itself as a weekly web magazine and I'm sure that they'd love to hear from any many people as possible.

Please also keep posting on TP - twice the awareness can only be a good thing.

Take care,

Sandy

 

[jc141265]

Brucie said:

Bear in mind that the web site for the conference may not always be there. I've saved off the documents I found personally useful.

If it helps, as a regular user of the Alzheimer's Australia site, I believe that the website referred to will remain in place, it will only be the items that age over time and become irrelevant due to new developments (i.e. the documentation on the summit) that may disappear.

Alzheimer's Australia really seem to be beginning to understand that people with early onset/younger onset have their own separate needs and are addressing this fact. It has been a long time coming, as I know I used to get frustrated by all the pictures and references to older people back in the day, but times they are a-changing - hoorah!

Oops too late for Da....but great nonetheless!

 

[icare2]

early onset !! that means UNDER 65s

When My Wife Was Diagnosed With This Illness,at The Age Of 54,that Is Now Going On 9 Years Now,but Now I Recall All What Was Going On Before That She Had It Approx. About 3 Years Before That,anyway We Were Told About The Illness From The Consultant At The Southern General Hospital In Glasgow,we Were Sent Home,no Presciption!! No Help!! No Nothing !!....

Since Then We Have Been To Hell And Back,what Im Really Getting To,is What In Our Experience In This Dreaded Illness,violence, Verbal,physical,really Bad Times,but !! Through Our( My Daughter) And My Love For Her We Never Ever Thought About Putting Her Intoo A Care Home,although Our Own G.p. Told Us That Would Be The Best For All Concerned,but Now Thankfully She Is Now Calmed Down,she Still Needs 24/7 Care And All Her Needs Attended Too,eating, Bathing,etc. Etc.

But From Time Too Time,she Is Still The Same Woman As She Ever Was,and Like Everyone Else,has Good Days And Bad Ones,and We Are Very Happy Too Have Her At Her Own Home And Surroundings,and Last Of All,she Is Just Now On!! 1 X 5 Mg. Of Diazapam Two Times A Day Morning And Night.
And She Is Now Doing Fine,touch Wood !!,as Every Day,and Hour Is Different,hope This Helps,as We Love Her So Mutch,and Now She Is No Problem At All, And Still At Her Home With Her Family

 

[Bookworm]

icare - wonderful to hear of the story of your devotion. It sounds so lovely thinking of your wife so cosseted and loved.

Nat - I love your mantra that gets you through the bad times:

"This too in time will pass... This too in time will pass...."

 

[icare2]

music that helps lotts

yes that helps,all the ones that she remembers,gets her dancing and smiling again xx

 

[icare2]

its just love

nothing else..

 

[icare2]

hi all, we are going on a summer holiday 2 morrow in Spain !!!

hello everyone, my wife, and my Life... Jane, has had this illness now going on no 9 years,yes nine years!!!..we have had all the the bad things , like real violent aggresion!!, when she was diagnosed in January 2000, in a very good hospital, that is the Glasgow Southern General, we were sent home, no prescrition no nothing, well that was the way it was then, but thanks really to my wonderful daughter Margaret, whow has been fully supported to her mother, and still is NOW!!..
2 morrow we are off on our holidays for 7 days in Bedalmadina, that is me and my daughter nad my grand daughter, all inclusive, the real reason I am posting this !! is no way 9 years ago I ever expected to take my wife abroad on any holiday again, but will keep all informed in how we get on, touch wood lol!! but thats what its all about, taking a chance in life ,thats if your lucky too have it !!, will be in touch soon.. so thers always hope, to all yous no hopers, that say AD..!!! thats her or him in a care home, listen ive heard all or most of the excuses, that you want to tell yourself, and most people aggree, thats because you want them too, to take the monkey of your shoulder, but this is your mother or father, not a monkey !!!

Moderator Note: This post has been reported as it contains inflammatory comments which contravene Talking Point’s Terms & Conditions. The post will be reviewed by the moderators and if necessary, appropriate action will be taken.

 

[dandare]

holidays

I would also like to know how other people get on going on holidays with their wife or husband who has alzhiemer's.

How do you cope with travelling, on planes if going abroad, or coaches. Dealing with sleeping in hotel rooms with different room plans bathrooms ets which is different to the home environment.

Is it better to do self-catering or hotels or all inclusive.

Is it better to take other family members for help or just the two of you?

Any experiences please.

 

[Brucie]

how other people get on going on holidays with their wife or husband who has alzhiemer's.

Good question.

My view is that it depends totally on

• where you are going [abroad, in the UK, etc]
• what stage the person with dementia is at
• because stages differ for people - what things cause problems at home?
• how well you feel you can cope
• whether it is really worth the stress for both people

Speaking for Jan and me, we went on holidays abroad until the final trip I knew we could go no more because it was not fair on Jan.

So often we may want the holidays to try and recapture things, or just as a break for us. We need to ask ourselves whether the person with dementia would really want to go.

Some problems we had:

• flights - seating
• airports - toilets where I couldn't go in with Jan
• hotel - losing way
• hotel - problems with cutlery
• hotel - problems with fear on the part of Jan
• abroad - confusion - "where are we?"
• hospitals - Jan tore a contact lens in her eye and we had to try and get it sorted
• medication - reaction to sun

All that being said - I wouldn't have done it differently. We did it while we could and I knew I'd done my best.