New diagnosis 12 days on

[sammyb]

Thank you again for everyone's replies to my posting. I am finding this website so helpful in understanding and coming to terms with my husband's diagnosis albeit it early days yet. To answer Becky Jan, yes we do have a diagnosis of AD following a SPECT scan.

I spoke with the doctor this week and asked if we should try and tell my husband of his problem in the most sensitive way possible. We decided not at the moment because of the risk of his becoming more depressed. Part of me thinks that, as an intelligent man, he must still be trying to work out what the heck is wrong with him and that it would be kinder to tell at least something. But then I wonder if he actually has insight now. His visual/spatial difficulties are profound, so too his short term memory loss and ability to orientate himself around the ward. Do people with AD continue to have insight into their problems or do those insights disappear and, if they do, when does that happen? I suspect there are no simple answers to that.

But I have had a lovely day with him today. Yesterday there was a glimmer of his returning to feed himself when he picked up a mousse pot and ate the contents without any prompting or assistance. Today I wondered if I might be able to go that little bit further. I poured his soup into a bowl, put the spoon beside the bowl and he picked it up and ate everything. Now it might not be anyone else's highlight of the day, but seeing him tip the bowl and make sure he had eaten every last drop whilst I sat back, relaxed and watched was wonderful. And yes, he ate all his ice cream for himself too. I asked if he wanted a big or little spoon for his ice cream and, for the first time in ages, he made a decision - and quickly. The little one. It might all go awry tomorrow but today was good.

 

[Grannie G]

Dear Sammy,

You`re doing well.

Please don`t take that as patronising, because it`s not, it`s admiration. However heartbreaking the diagnosis has been for you, you are getting on with it and managing your situation as well as you can.

My husband wasn`t officially told he had Alzheimers, although we were both with the consultant when he prescribed Aricept. He just didn`t pick up on it, because of his condition.

He has always been very aware that something was happening to his brain, and it got to the stage, probably 9 months or so, following diagnosis that I thought it was appropriate for him to have a label for his condition. He took the news remarkably well, was upset but having a label somehow made it authentic and not a figment of his imagination.

It`s lovely that your husband has resumed some of his basic behaviours and you have had some relaxing times. You know him better than anyone and you will know when the time is right to discuss his condition openly.

I hope you will continue to post on TP, as reading of your experiences helps us all, whilst at the same time you can receive support and friendship from others.

Take care

Love xx

 

[maria29al]

My Mum is unaware that she has Alzheimers. We have always avoided the word in front of her as my Dad passed away last year and he also had AD. She watched him deteriorate fast and was with him when he passed on. I think she would absolutely panic if she knew she had it too..although I am not sure how much she would understand if we told her now.

I hate "avoiding the truth" with her but think it would be cruel now to tell her. We tend to tell her she has "a bad memory sometimes" or a "bit of a problem with her speech" if she asks. Maybe we are wrong but its the way we have decided to handle it..its so tough to know what to do for the best.

M
x

 

[Skye]

Do people with AD continue to have insight into their problems or do those insights disappear and, if they do, when does that happen? I suspect there are no simple answers to that.

Oh dear, Sammy, how many of us wish we had the answer to that one! In fact, there are no simple answers to and questions related to AD. Every case is different.

I think you just have to go along with your own instincts. It's like not giving a child information until they ask the question. If you think your husband is worrying, try to talk to him gently about his problems. If he just accepts them, as my husband has always done, then there's no need to upset him with details.

I'm glad you had such a lovely day with him yesterday. John also ate soup himself for the first time. OK, a lot of it was down his pyjamas, but that doesn't matter. He's now beginning to improve at last, and that's such a good feeling.

All the best,

Love,

 

[Margaret W]

I'm in need of the same advice. Mum is often lucid, much more settled in the care home (2 months). Her house is virtually sold, and today she said "it was a mistake selling my house, I could have gone back there, I am okay now, they have given me tablets and I'm fine". I gently said, "No mum, you were found in the street at night, the tablets might stop it getting worse but they don't make it better". "I didn't come to any harm", "No, thank goodness, but here you are safe, I had to know you were safe".

She isn't fine. The staff tell me is regularly up and dressed in the night and they take her back to bed.

I've never told her she has Alzheimers or Dementia. She knows her brain has shrunk, but thinks the Aricept has put that right (she isn't on Aricept any more, not sure why, or how to find out why).

Should I tell her? Will it make her more accepting of why is in a home, or will she still think there is no good reason.

Margaret

 

[jenniferpa]

I think in your heart of hearts you know the answer to this Margaret. She thinks she's fine but you know she's not - I doubt telling her (and more importantly expecting her to a) understand and b) remember) will make an iota of difference. Just keep hammering on the "I need to know you're safe" aspect of the whole thing.

 

[Petrus]

To Tell Or Not To Tell

I spoke with the doctor this week and asked if we should try and tell my husband of his problem in the most sensitive way possible.

The answer is VERY personal - personal both to the sufferer and the family. I well understand the reluctance to tell - and I would never dare to pass a judgement. However, let me provide some argumentation for and experience with telling.

In J's case she and I have always said that we would want to know the truth about any illness. When the GP (and then the consultant) asked how much we wanted to know we had no hesitation in saying we wanted the unvarnished truth (gradually they have become more comfortable in telling us detail). When the diagnosis was first made J. was moderately demented and had reached that stage in less than 12 months (perhaps as little as 6). 15 months later she is severely demented (and knows it), but in line with literature on highly educated people with early and rapid on-set AD she has retained more conversation and understanding skills (but not reasoning or short term memory) than is normally seen at that level of dementia.

Because of her volunteer background she was well familiar with what a diagnosis of AD meant. There was (and is) a lot of fear and we sometimes talk about it. However she was able to co-operate with me in preparing an EPA, a living will, trust funds for our son and grandchild and, at her request, her funeral service. Together with me, she also met with our son and his family to talk things through and agreed with me that I should tell her friends (mostly by e-mail or post) and our neighbours and local friends. She is quite comfortable when we are in shops etc. if I need to explain why I should go with her into fitting rooms or order her meals or ..... She also understands that if I need to excuse her behaviour I tell why.

From her and my volunteer work in mental health, we are convinced that for society to deal properly with mental health issues it is necessary (but not sufficient) that the issues are taken out of the closet. That means we have to become comfortable talking about them.

Our experience in the family is that the openness has worked. That is not to say that we do not have problems; that we do not have floods of tears; that we do not have to handle issues sensitively (care homes for example are very difficult).

Our experience with friends and neighbours is that, following the initial shock (and some denial) they have responded well and do very practical things that are most useful (picture post cards are a source of great joy; e-mails which I read to J. are also much appreciated). Neighbours are especially helpful in inviting J. to coffee etc. People are only too willing to assist if they see J. needing some help with something, especially when she goes to women's events in the village - which the women in the village encourage (and we are relatively recent in-comers), although they will check with me if they feel the event might be inappropriate.

In society at large, I have experienced NO problems. On more than one occasion it has prompted something along the lines of, "My so and so has got that too. Oh it is so good to talk to someone who does not hide it. I thought there was something wrong with (different about) your wife. I did not know AD could strike someone so young- and fit-looking. I thought it was only old people who got it."

Let me stress: each family must make its own decision in the light of their family sensitivities. However, my experience is that it is possible to be quite open and it brings its own benefits (and challenges, of course).

 

[Taffy]

Dear Sammy,
Shared experiences with other carers varies on 'If To Tell or Not To Tell'. Some believe it is their right to be informed, others believe it is best not to inform. I personally feel it is all about their level of awareness. I think we all do what we feel is the right thing I didn't tell mum because she wouldn't accept that there was anything wrong in the first place and all the mishaps were someone else's doing anyway so I could see no benefits in her knowing she had ALZ.

We decided not at the moment because of the risk of his becoming more depressed.

Sammy, I think already been depressed and been told you have Alz would truly add to the depression, so, I feel you made the right choice here. You will know when and if the time comes to tell your hubby. I hope you continue to see improvement. Regards Taffy.

 

[sammyb]

in line with literature on highly educated people with early and rapid on-set AD she has retained more conversation and understanding skills (but not reasoning or short term memory) than is normally seen at that level of dementia.

I didn't know that Petrus. My husband's AD seems to be pretty early and rapid in its onset and, whilst the literature I have read would suggest that speech is one of the earlier powers to diminish, I haven't seen it with my him. His speech is still good. He is an intelligent and educated man and now I understand why his speech is good but his reasoning not so. Thank you for that.