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how to and pros and cons of telling wife

Norwegian Blue

Registered User
Oct 1, 2006
2
I am 95% certain that my wife (age 60) has AD.

I have only come to this conclusion over the past few weeks and it seems to me more noticeable every day.

I expect to get a specialist confirmation in Mid december.

I believe that she is somewhere in the middle of the first stage.

She knows that she has a memory problem, but does not seem to suspect AD; she has recently been prescribed some medication ( not received yet) for this by a consultant.

My questions are:

1) can someone who has been through this give me some advice to help me determine my best course of action. What to do, how to, or whether, to break the news; how to do it etc? Best ways of breaking the news ( if there is one)

2) Is it better not to know that one has AD? I imagine that it can cause depression.

3) Or is it better to know, so that one can plan to get the most out of life while one can.

any advice gratefully received.
 

Amy

Registered User
Jan 4, 2006
3,454
Hiya Norwegian Blue,
Welcome to TP. I am sure that others who have been in your position will reply soon.
I'm hoping that KenC reads your posting. He has dementia (Lewy bodies), and would be able to give you an insight from a 'sufferers' perspective.
Love Helen
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
71,740
Kent
Hi Norwegian Blue,

My husband was diagnosed with AD last year. We didn`t tell him until I felt able enough to cope with the questions he would ask, and the possibility of his refusal to accept the truth. Also my son and I were trying to protect him from the diagnosis, rightly or wrongly, as he has always been terrified of illness.

I gave him no false hope, but when medication was prescribed, he took hope from that, and I didn`t want to seem negative.

Things got worse and the depression increased. He was becoming increasingly agitated and confused, and absolutely hated the thought of becoming more dependent. He felt he was losing his dignity and self respect.

That is when I took the bull by the horns and told him he had AD. I sat down with him and told him as gently as I could, in the most simple and straightforward way possible. It was a dreadfully upsetting moment for both of us.

He took it remarkably well, and said he knew something was wrong. He was glad I told him.

Then followed a period of dreadful depression but he`s finally come through it.

Now we discuss AD openly. I`m sure he doesn`t understand the full implications of AD as, unfortunately, when he feels well, he thinks he is better. He also makes comments eg. `We are lucky we both have good health` and `I hope I can be as active as this for another 20 years` and I find them heartbreaking.

When his memory loss or confusion are evident, it`s like a slap in the face for him.

All I can say to you, is play it by ear. You know your wife better than anyone, and you are best suited to decide what she would or would not be able to cope with. Whatever you decide, it will not be easy.

Take care......Grannie G
 
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jenniferpa

Registered User
Jun 27, 2006
39,448
As Granny G highlighted this is a big issue for dementia sufferers - even if you tell them the problem, it is entirely possible that they will forget what has been said. My mother (89, post stroke) on occasion forgets how old she is and that she has had a stroke, and when she says to me "Thank God I still have my marbles" I just want to cry. When she's having a "good" day, in that she recognises there's a problem but doesn't know what it is and asks, I tell her as gently as I can how old she is, and that she has had a stroke, and if the marble issue comes up, I say: Yes, but they're a bit shaken up.

Jennifer
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Norwegian Blue

I can understand your doubts. It's very hard to know what is going to be the least upsetting for your wife. My instinct is always to be honest, but only to the extent that you upset the other person as little as possible.

My husband John was diagnosed six years ago, he was with me for the diagnosis, and we have never concealed it from friends or family. Our attitude is that AD is a disease like any other, and nothing to be ashamed of. We have done several interviews together for Alzheimer Scotland.

I realise I am very lucky in the personality of my husband. John has taken everything in his stride, and happily discusses his problems.

You know your wife best. You know whether she would be able to handle such openness. You are the person she has to trust above all others, so be as honest with her as you think she can take.

Let us know how you get on, you'll find lots of friends on TP.

Skye
 

Jodie Lucas

Registered User
Dec 3, 2005
57
Eastbourne
pros and cons

Hi norweigan blue,

can only give a professional opinion, but have experienced both the pros and cons of revealing a diagnosis. We did have a client where i worked who knew his diagnosis and became very depressed, however another client who had not been told his diagnosis and was distressed by symptoms that appeared to have no apparant cause or explanation.

Its an issue of great debate amongst health care professionals

Jodie
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
Pros and Cons of telling your wife

Hi Norwegien Blue,
I have Lewy Bodies and was diagnosed about 2 1/2. I really don't know the answer to your question but I will say one or two things.
I was told by the Consultant that I had it straight away and with the help of my wife, I used it as an advantage in a strange sort of way. I decided that fom then on that life would be shortened and therefore I needed to get as much out of life in the short term and live it as it came. We are all very different and look at things in a different way, and we have different needs. Life can be deppressing enough but if you are not given the diagnoses, you may well worry that you are going mad. At the end of the day you will have to wait for the diagnoses and then ask the doctors advice. After that I would contact the Alzheimers Society and find you local branch who will be able to give all the advice and help you need. This worked for me, and in the end I was asked to speak to others about Dementia in the hope that they will understand it a little better. I was lucky enough to be given the chance of the medication which worked and is many ways gave me my life back. But not everyone gets the chance, as it does not work on everybody. But I think that the only way round this is to talk about it openly and live or try to live life as it comes. Its very difficult to be totally positive but I think we have to try for our families sakes.

Best Wishes and Good luck

kenc
 
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Helena

Registered User
May 24, 2006
715
We have tried to tell my Mother 90 that she has Dementia but she refuses to believe it and insists " everyone else is mad not her " she refuses to go to the doctors and is very aggressive and violent if you tell her she is wrong or you try to get her to see sense
 

KenC

Registered User
Mar 24, 2006
913
Co Durham
pros and cons

Hi Helena
I have heard this said at many events. Many of the older people refuse to listen, because they can remember the days when people with Dementia, were in many ways sadly classed as mad. At least these days we are treated differently, but many elderly have memories of the older darker days. Everytime I go to an Alzheimers event as a person with DLB people have said this. I really do not know how you can get round it. I suppose it is very diffent if the person is younger.
Having said that I was 56 years of age when I was diagnosed and it was very difficult for my wife and I to accept it in the first place. I was a College Engineer, and in my opinion the diagnoses was a complete shock, but I had to learn to live with it and accept it. My wife kept me afloat while it sunk in and without her and our local branch of the Alzheimers Society I would be lost.
We are all very different and react in many different ways.

Best Wishes

kenc
 

Lila13

Registered User
Feb 24, 2006
1,342
My mother was aware of her symptoms before we were.

At the first memory clinic appointment it was obvious that she was unusual, she was the one who had complained of memory loss whereas other patients were in denial.

I don't think we ever had a proper diagnosis, but when Aricept was prescribed she read the leaflet enclosed in the packet.

Lila
 

drummer-john

Registered User
Apr 29, 2005
18
72
Leeds
Hi Norwegian Blue
My partner was formally diagnosed with AD 3 years ago at 55. She was told rather brutally by the Memory Clinic nurse and her initial reaction was "that's a death sentence then" - since then she's been pretty much in denial. I've thought about it a lot recently and there seem to be loads of issues here.

For a start, the diagnosis is not 100% certain, without a brain biopsy, which doesn't happen. Also, this is not a disease with a predictable or mapped-out progression, so does it really matter if it has a name? Brenda is desparate to know what will hapen to her over the coming months/years, but nobody will attempt to predict how the disease might affect her - and why prepare for a worst case scenario? Equally, I feel that explicitly doing things "while you still can" can introduce an air of desperation to situations that could or should be fun.

There's a recurrent theme of "one day at a time" on TP and I've always thought that was the best advice there was. Ultimately, though, Grannie G (wise woman!) has summed it up well, in that you are the one best placed to decide if, and when, you face your wife with AD.
Good luck and all the best
John
 

merlin

Registered User
Aug 2, 2006
139
Surrey
Hi Norwegian Blue

Have had the same dilemma with my wife now aged 69 and diagnosed about 2years ago. Took the cowards way out and dealt with it a day at a time. Also had the same problem as Helena ie violence and aggression whenever the problem came up and complete denial She has refused to co-operate with the memory clinic and also refused to take medication. The last visit 6 months ago to our home to try for an assessment was not a success.

We have another assessment scheduled for tomorrow and we'll see what happens. They are incredibly stressfull for me and that is a point worth bearing in mind if you go ahead and tell her. I probably left it too late but will have to take the plunge eventually.

Good luck
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Norwegian Blue,

You have already received a great array of useful feedback on your post. A number of posts on this topic in the past have indicated that the choice of how much to tell the patient is not always clearly discussed by the medical professionals in advance. As drummer-john has outlined, sometimes the diagnosis is given directly by a doctor at a clinic appointment.

I suppose this has positive and negative aspects. It does seem somewhat unfair for a spouse to bear the sole burden of telling their husband/wife of the diagnosis. If someone is in denial they are likely to resent their spouse's delivery of this news. On the other hand, they might be more willing to accept this news from a doctor.

Can I just ask what medication your wife has been prescribed and how the consultant framed the need for the medication?

The dementia journey is a long one, with many unpredictable twists and turns. I would have thought it unlikely that you could conceal the diagnosis from your wife for too long. If she does have some form of dementia (and again there may be more tests to investigate this further - has she had a brain scan yet?), there will eventually come a time when the potential meaning of her diagnosis will fade from her mind.

If she becomes depressed in the future, that could be as much to do with the actual symptoms (and associated frustrations, anxiety, etc) of her condition as with any diagnosis.

The following factsheets from the Alzheimer's Society's web site might be of interest (there is a link in the top left corner of this page to all the factsheets):

http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Conditions_with_dementia-like_symptoms/info_depression.htm

http://www.alzheimers.org.uk/After_diagnosis/advice_whatif.htm

Take care,

Sandy
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi norweigein blue, been on holiday, just logged in again.


Lionel was diagnosed when he was just 60, took the diagnosis' very well' at the time.....now five years on, his memory is cloudy and confused.....but I am so, so gratfull for that time when we could do "all the normal things", and talk of planning for tomorrow, although I knew their was no tomorrow in our case.

We have had some very, very good times in between, so my advice for you is "go with the flow and if you can do it - DO IT, tomorrow brings another day, another dimension" Go for it. Love,
 

Norwegian Blue

Registered User
Oct 1, 2006
2
Thanks for help

thanks for for all the helpful advice and kind thoughts.

Sandy to answer your questions, the drug prescribed is Aricept 5 mg daily. And the specialist did not give me any advice except to make an appointment for December.

What I propose is to raise the possibiolity of AD with my wife after we have a short holiday in November, and then let the specialist confirm this ( or otherwise) in December.

I do plan to do more activities in the future, ie to make the most of our time as many of you have suggested.

Thanks again for all your advice.
 

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