To share or not to share

[Esposa]

My husband is 61 and has recently been diagnosed with dementia. He is reluctant to talk about it and tends to respond to my efforts to 'open up' with a joke. He has though said that he does not want to tell his or my family because it would worry them. I feel I must respect that. Moreover it would indeed worry them and there is little they could do-none of our families lives near us and we no longer visit because my husband is very reluctant to leave the house never mind the county. I am however thinking of telling a few local friends and acquaintances frankly because I feel a need to share it and because if he does become disorientated on the rare occasions he is in town then if they see him they will be better placed to help. What do others think?

I am also interested in your experiences of the diagnosis. My husband was assessed at home by a consultant psychiatrist who spent very little time talking to me ( less than 5 minutes) after he had talked with my husband. He said at the time that he had MCI. At my husband's next routine appointment with his GP , the GP read the consultant's report from the screen and read out that he had diagnosed dementia. This came as a great shock to my husband. He was on his own. I feel the GP should have read the report in advance and asked my husband to attend with me or a friend present. As it was he was upset and confused. I only realised he had dementia when I recognised he had a new prescription - for Arricept. The diagnosis was in early February since which time there has been no follow up. I have raised my concerns with the GP and Consultant but am reluctant to complain further as my husband does not want me to. How can professionals act so carelessly ?

 

[LadyA]

The consultant told you and your husband that he had MCI (Mild Cognitive Impairment) but the GP said that from the consultant's report, he had diagnosed dementia? MCI is, from my understanding, something which may or may not progress to dementia. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=120 This is something you may need to clarify before deciding whether to tell people or not.

As to telling people, with my own husband, I was guided by necessity. As his dementia developed, even in the earlier stages (when he was still functioning "normally" to all intents and purposes) his behaviour and moods were erratic and I found that eventually I had to explain to people - even before he was officially diagnosed. And as he had not been officially diagnosed (because he refused to attend the appointments made for him with the consultant by his GP!) when he would exhibit any bizarre behaviour or out of place anger toward someone, I would just apologise quietly and explain that he was "having some age-related problems". People immediately understood what I meant, and a lot of people said something along the lines of "Yes. Actually, now that you say it, we had noticed he was having trouble recently." and one or two went on to relate tales of meeting him in town, and he failed to recognise them. So, I think I would be guided by how things pan out for now.

The thing with a diagnosis, you see, Esposa, is that really - nothing has changed. Things are the same today as they were the day before the doctor mentioned the word "dementia". Things won't change very quickly. Your lives will carry on as they have been for a good while yet. The only difference is that now, dementia is no longer the elephant in the room! It's in the open, more or less. So, gather your thoughts, and take a few days or weeks to get used to it. Check out the fact sheets in the Resources section. Educate yourself, because knowledge, to a certain extent, is power. And very best wishes. xx

 

[Kevinl]

Hi Esposa, welcome to TP
I think in the first part you have to balance your husband's right to privacy of his own medical conditions versus the benefits of his family and friends being aware, if you had a medical condition would you be happy for it to be disclosed against your wishes?
I can see where you're coming from in that it could be of benefit in the circumstances you outline but equally you may be surprised at how some people take the news and the way they react to it, it may do more harm than good. Read the stories on here of how you stop getting invites to social events, asked to leave the church/bowls club and in one case barred from the local pub.
The second part, I totally agree health care professionals can be incredibly insensitive, they see you as a condition not as a person, they're trained to deal with a patient and anyone with them is a distraction, some who are trained or sufficiently aware to read the situation can be very good. Just the other week I went to an appointment with my wife (not AZ) related and after asking her a couple of questions and getting no answer the health care professional turned to me and asked "is there something wrong with her?" I pointed at the letter on the screen in front of her to a letter the first paragraph of which stated her condition and instructed tests should always be carried out as she may not be capable of comprehending.
Welcome to the club
K

 

[jaymor]

Hello and welcome from me too.

My husband was diagnosed 10 years ago aged 62. His diagnosis came after a range od blood tests to rule out other reasons for his memory problems and an MRI scan on his brain. He was prescribed Aricept.

My husband was fine with telling people who he worked with of his diagnosis and he carried on working for 4 years running his business with the help of his colleagues who now understood the reasons for his sometimes out of character behaviour his memory lapses. The family knew too and were relieved that we all now knew the reason for the changes happening to my husband. I would have respected my husband's decision not to tell anyone if that had been his wishes but it would have made life so much harder for us both.

As LadyA said, a diagnosis is power and it opens the doors to help and support, though sometimes the door is heavy and needs a great deal of strength to push it. A diagnosis won't make today different from yesterday or tomorrow different from today, it is just knowledge.

There is on the forum lots of help, advice , support and friendship offered by the members so please join us and use the forum for support.

Take care,

 

[pamann]

Hello Esposa Welcome to talking point, l can not add to what has been said, l joined almost 3yrs ago my hubby has AD the help and advice here is a lifesaver for me, so many lovely people to support you, when my hubby was diagnosed he didn't know what AD was, so he didn't have to worry about it. Keep posting

 

[truth24]

Welcome from me too. Agree with the other posters. Please take one day at a time. You can still enjoy your life together - you just have a diagnosis now. MCI is often diagnosed in the early stages but its progress can be very slow so try to stay positive even if you wake during the night consumed with anxiety. As mentioned, your consultant was very insensitive and should have been honest with you. I think you will know when the time comes to share with friends, etc, and you may need the comfort of sharing with someone close to you who you know will understandand and be there for you. If not, then we are all here to support you. Best wishes.

 

[Jessbow]

Its a huge worry on your own, and I think there will come a time that you need to share for your own sanity.

its difficult, but your needs do come into it too. Do you feel it would be better to have those nearest and dearest to you 'in the know'?

 

[Yasmine]

Yes keep posting. I know how you feel, I'm in the same situation. I haven't yet gotten the nerve to write about my personal situation. But reading other people, seeing that I'm not alone gives me relief. I don't feel as alone.

Stay strong!

 

[Caroleca]

Dad kept mom's a "secret" for a few years. We still can't believe how "clued out" we were....I think he should have been more honest..it would have made thinks much more clearer for everyone....not to mention...we could have been much more helpful and aware.
Carole

 

[Quilty]

I decided to tell peopke who cared about my mum as they then wanted to be extra vigilant. This helped her stay normal and live her life for a further 12 months.

 

[di65]

Hi Esposa, and welcome to Talking Point.

I will comment from my experiences. My FIL had Alzheimers for about five years before my MIL told anyone of his condition. The family had guessed, but she kept a lot of details of his behaviour from us. As a consequence of his erratic and confusing behaviour amongst friends, they slowly but surely stopped calling. This made Mum very lonely with only Dad and the family for company. As a consequence, now that Dad has passed away (9 years) she rarely goes out as she no longer has any friends and has lost the art of socialising.
When my husband was diagnosed, we made a conscious decision to share the diagnosis. To date (after 7 years) we have not had any friends 'disappear' and his fellow Rotary members pick him up and look after him whilst he is at meetings. They understand why he is acting a bit strangely from time to time. and accept him for who he is.

Here's hoping you can get some help from these posts. and yes - keep posting!

 

[Trisha4]

My husband is 61 and has recently been diagnosed with dementia. He is reluctant to talk about it and tends to respond to my efforts to 'open up' with a joke. He has though said that he does not want to tell his or my family because it would worry them. I feel I must respect that. Moreover it would indeed worry them and there is little they could do-none of our families lives near us and we no longer visit because my husband is very reluctant to leave the house never mind the county. I am however thinking of telling a few local friends and acquaintances frankly because I feel a need to share it and because if he does become disorientated on the rare occasions he is in town then if they see him they will be better placed to help. What do others think?

I am also interested in your experiences of the diagnosis. My husband was assessed at home by a consultant psychiatrist who spent very little time talking to me ( less than 5 minutes) after he had talked with my husband. He said at the time that he had MCI. At my husband's next routine appointment with his GP , the GP read the consultant's report from the screen and read out that he had diagnosed dementia. This came as a great shock to my husband. He was on his own. I feel the GP should have read the report in advance and asked my husband to attend with me or a friend present. As it was he was upset and confused. I only realised he had dementia when I recognised he had a new prescription - for Arricept. The diagnosis was in early February since which time there has been no follow up. I have raised my concerns with the GP and Consultant but am reluctant to complain further as my husband does not want me to. How can professionals act so carelessly ?

Welcome. We decided from the very beginning to share my husband's diagnosis of Alzheimer's with friends and family and also with people we come across. For us it has worked but everyone is different. We have had support from everyone we have met and, for my husband, it gets over possible embarrassment of having difficulty with words. I hope you find a way through that works for the two of you.


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