just diagnosed

[miffy]

My partner has just been diagnosed with Altzeimers.He says he doesn't want me to tell anyone,but I am finding this very difficult as I feel that it is important for his immediate family to be aware,Has anyone had a similar problem to deal with?
I would welcome some guidance

 

[Grannie G]

Hello Miffy

When my husband was first diagnosed, we weren`t told outright but I knew as Aricept as prescribed immediately. I did tell family and friends though, as it gave an explanation for his behaviour, it just wasn`t discussed openly with him.

A few months later he was really concerned about himself so I told him he had Alzheimers. Then he didn`t want people to know.

As he began to accept what he had, he talked about it more. Now he knows family and friends know he has it and a couple of weeks ago he even told his support worker he has Alzheimers.

You know your partner best so you should be able to decide the best thing to do. A little deceit is sometimes necessary however much it goes against the grain.

Love xx

 

[miffy]

thank you grannie G

Thank you very much for your reply I found it really helpful

 

[Taffy]

Hello Miffy,

I just wanted to welcome you to TP and hope you find lots of support here. I have no experience of your present predicament [my mum had Alzheimer's] I can understand your feelings on wanting to let immediate family know, I feel I would be the same yet also feel torn to go against the wishes of a partner. I could see problems that could arise and could of being avoided if others knew of the situation. Your the meat in the sandwich here, I feel for you. I hope all goes well, Taffy.

 

[BeckyJan]

Hello Miffy:

My husband was diagnosed some 5 yrs ago. He did not want anyone to know However I had already discussed with close friends and our daughters. After a few months he himself seemed 'happy' with telling people - his expression used to be 'the trouble with this bl. y Alz. is I cannot remember anything'. He did this at a get together of all his ex work colleagues and they admired him for it.

He is now further down the track and he forgets he has Alz. - just says 'what is the matter with me?'.

Most of the time I try to be honest as I want him always to trust me, but sometimes white lies are necessary.

Please keep posting as you will get much support here.

Love Jan

 

[Helen33]

Hello Miffy

My husband was diagnosed with a dementia about a year ago and he didn't want anyone to know either.

My partner has just been diagnosed with Altzeimers.He says he doesn't want me to tell anyone

If your partner has only just been diagnosed, he might need some time to come to terms with it himself.

After a short time, I realised that my husband didn't want neighbours to know - he didn't mean family.

Love

 

[Canadian Joanne]

My mother was never officially told she had Alzheimer's. I believe my stepfather tried but she would go into such a rage. So we never really discussed it with her. By the time she was diagnosed, she was a stage 4 on the Reisberg scale.

My sister and I regret not telling her, although honestly I don't know if she would ever have accepted it. Because if she had been told, she would have had the opportunity to make decisions about her care. Unfortunately, her aggression and agitation were too high for us to ever do that.

If she even heard the word Alzheimer's, she would immediately say "No one in my family has ever had Alzheimer's". It was hopeless.

The closest she came to accepting anything was that she had "some memory problems" "her memory wasn't what it used to be" etc.

I think it's important the immediate family know. Is it possible to tell them not to let on they know? You will find that, unfortunately, little white lies often help smooth the day.

Good luck and keep us posted.

 

[Brucie]

It was clear to me, way before diagnosis [4 years before!] that she had a dementia.

At that early stage I told my employers what I suspected and they gave me space to be able to take her through many, many visits to a variety of consultants, and to look after her at home.

I told family and friends in confidence and they gave Jan space when she was having major problems in public, and at gatherings of friends/family. Without my having done that, there would have been much more likelihood of her being yet more distressed, and of others being affronted/confused/angered when there was no need.

I only told close friends and family - in my opinion they needed to know because the behavioural presentation of Jan's dementia might otherwise have lost them to us and, with dementia, one needs all the friends one can get!

 

[ROSEANN]

Hi Miffy
Welcome to TP.
At first my husband did not want anyone to know about his illness only family.
But I found that telling close friends and neibours helped me because he liked to go off for walks and these friends would keep an eye out for him and sometimes sit with him to let me have a break.
So a little white lie sometimes has to be told.
Just ask your family to be discreet about knowing and I am sure it will work out for you.
You need to share the news for your sake as well you will need support as time goes on.
Keep posting you will find lots of help here.
Roseann

 

[TinaT]

I have always said to my husband that he has a brain disease and stressed to him that although his disease causes us great problems, so does any other disease which people get. No one wants to have cancer but people get this terrible illness also. I am lucky in that he has never pushed me hard about the prognosis and to this day, he thinks that he will get better soon. We both like it this way, why face a hard truth if it can be avoided. We have hope for our future, even if the signs are that this is a delusion.

I have always tried to avoid the word Alzheimers to others as I feel most people have a misconception of a disease which they think is confined to the elderly and is about 'forgetting' things. My husband is not elderly and thankfully although well advanced with dementia, has not forgotten any of the family or his friends (so far). He does have language problems and mixes up names as he does many other things. I'm glad I know exactly what his diagnosis is (Lewy Body Disease)because it helps me to understand his strange behaviour and the many movement related problems he has.

Our close friends and relatives have known from the start because as in Brucie's case, by the time we got a diagnosis, he was well advanced and it could not be hidde from anyone.

My love to you and your husband. Keep smiling even in the face of adversity.
xxTinaT

 

[miffy]

Thank you all for your very helpful replies,I feel much better now as I have been able to tell two family members in confidence.I do now have another problem,I am very keen to attend a carer's group locally but Brian doesn't want me to he says that we don't need it because its only his memory and he says he's getting better since being on the Aricept for two weeks.I don't want to disagree with him but I son't think there is any change.He became quite anxious when I said I would like to learn more about the condition so I let the subject drop.Does anyone have a similar experience and ways of dealing with it.I don't want to do things behind his back.

My thought are with all of you who are going through these difficult times.
I have just started reading "Contented Dementure"Has anyone else come accross this?

Best wishes

 

[BeckyJan]

Hello:
Is the carers' group part of the Alz Society or local council?

Could you enquire if there are any Alz. cafes around - they may be coffee mornings, lunches, or just get togethers. Then you could tell your husband it would be good to go along to meet other people with 'memory' problems. It might work. Then the carers group could follow once he accepts the diagnosis more readily. I would not rush him into it. He may still be adjusting. I think it took us about 6 mths before we went along to any support group.

Others may have other ideas.

 

[Grannie G]

Hello Miffy

I understood from your post,
not only does your husband not want to go to a support group but he doesn`t want you to go either, is that right?

All I can suggest is you bide your time and then tell him you are going to a coffee morning. It`s being a bit economical with the truth but sometimes needs must.

After years of being together and sharing everything with honesty, it goes against the grain to go behind backs, but if you want to meet others in similar situations it might be the only way.

It takes a long time for some people to be able to accept the diagnosis. Many are in denial and three years down the line, although my husband acknowledges he has Alzheimers, he still thinks it is not `real` Alzheimers and there is a cure.

 

[Squibbs]

germs

I dont have the same problems as a lot of you because it is my 86 year old father who has Alzheimers. My father has now accepted that he has A. but believes it is caused by 'germs' and the Aricept is killing off the infection! He also tells everyone that the GP asked him as a special favour to take the tablets as part of a trial and that because he served his country (he was in the army for many years) he is the ideal candidate for this important mission. We do not contradict him we just go along with what he says - if it keeps him happy and makes him feel he is doing something for 'the greater good' well that's fine by us ! Sue

 

[melly]

My family have always been very proud and kept any problems to themselves so when my mum was diagnosed with AZ, my dad really didn't want anybody to know.

They are only in their 50's and had a great social life although because they didn't explain what was happening, friends and family became frustrated and hurt and they became quite isolated for some time. Then as mum began to change, dad knew he had to be honest and finally explained what was wrong.

If they had known, their friends would definitely have been there as support to them, which would have been really valuable at such a hard time. It is certainly nothing to be ashamed of so I strongly advise you to let it out! Now people are aware, we have had so many friends and even friends of friends offering help and advice and our support network has really grown!!!

 

[melly]

I have always tried to avoid the word Alzheimers to others as I feel most people have a misconception of a disease which they think is confined to the elderly and is about 'forgetting' things.

I completely understand what you mean by this and find it so frustrating!!! As I have mentioned before, my mum is only 56 and if it was only about her forgetting things, I think it would be far easier to cope with. There doesn't seem to be enough coverage on TV and in magazines to illustrate what it is really about. I think if people really understood, there would be much more money put into finding cures as there is with diseases such as cancer. It is such a complex and sad thing to be a part of- I miss my mum more every single day but make sure I make the most of all the time I spend with her.

 

[connie]

Dear miffy, I admire the way you are only thinking of your partner.

Remember however, you can support them, but you may well need someone to support you. Please don't trap yourself into making promises that are going to give you grief if you have to break them.

Of course you will always find empathy and support here on TP.

 

[jc141265]

Brain disease! If only I had thought of describing it as such back in the early days! Its so true, when you tell people its Alzheimers they usually come back with shock that it has happened to one so young, but then they seem to write it off as not too bad, just forgetfulness and pleasant unawareness of their fate and then, and then (!) they act like you are upset about nothing!! A few years back I switched from calling it Alzheimers and instead started calling it dementia, due to the lack of understanding that would arise as soon as I mentioned the 'A' word! Dementia gets a better response, but brain disease, that would have been even better.
The other day I had a sit down with a new boss, where she told me about her life and I told her about my life and for the first time I felt like I got the description right. I still made the mistake of saying he had been diagnosed with Alzheimers (honesty is so hard to curb sometimes) but this time I explained that it was a 10year process of Dad becoming increasingly brain damaged so that over time he lost both his mental and physical abilities. It was such a relief to have finally made someone understand why it was taking such a toll on me, to be able to explain that I didn't want a high stress job, just wanted to do the work required of me and go home each day.
And its not just about me and wanting people to understand the pain I am dealing with...I want them to respect how hard this is on Dad, respect his life, respect his fighting spirit. For some strange reason Alzheimers is seen as an easy way to go.

 

[blackforest]

We have the same problem and I was just about to start a new thread on the same topic! So glad to see this one here already and so many helpful comments.

My aunt (to whom I'm close) was recently diagnosed with Alz and is ADAMANT that nobody should be told about it. It is obvious to everybody who comes into contact with her that something is not quite right, and her husband is constantly asked whether she is OK. He lies and says she's fine, as this is what she wants. They are avoiding some social situations and contact with family because of this. We have no idea what to do as the strain of lying and isolation will only become greater as the disease progresses. And the longer her close family don't know about it the more shocked and upset they'll be when they find out.

For our support, I feel that it would be OK to speak to close friends who don't know her (although she'd be mortified if she knew). It seems like a compromise between respecting her wishes and ensuring some kind of outlet for us. What do you think?

But the bigger question is whether her best interests are being served by enabling all this secrecy. It is unlikely that she'll change her mind as things progress, as she's quite a private and dignified person and this would feel like a dreadful humiliation for her. But the strain on her husband is likely to be enormous and this won't do her any good in the long term, I think.

Gah. I feel guilty even posting this. I know she'd hate it.

 

[miffy]

Dear Blackforest, I'm so sorry to hear of your predicament,I can only say that I have felt such enormous relief since telling two members of close family.I felt very guilty for breaking a promise to him,also really nervous that Brian might find out but they understand totally and are very supportive and said to me that they would have been very upset had they not been told.Now they feel that they can be of help and support without him knowing.I think if you follow your instinct and do what you feel deep down is the right thing, you can't go far wrong.
Good Luck and keep strong, think of all the good times.

Best Wishes from Miffy