My husband is just 65 (8 years older than me) and, 2 days ago, was diagnosed with 'cerebral atrophy' following an MRI scan of his brain. In the last 5 months he has had three operations and other medical procedures all of which have made him physically fine but the medical people concluded, 2 months ago, that he was suffering from severe depression and he was transfered to a psychiatric ward. I pushed for appropriate 'organic' assessments of his mental health because I believed him to be confused rather than depressed. To be told he has dementia has been devastating because it was not a diagnosis I had expected. It has made me very sad. I am sure there are those of you out there who have experience of what it felt like to have that initial diagnosis made on a loved one and I would be grateful to know how you coped with the feelings that surfaced in you.
New diagnosis
- Thread starter sammyb
- Start date
Hi sammyb and welcome to Talking Point.
I found that it was invaluable to concentrate entirely on how to change our lives so that we could minimise the distress to my wife, to make as long as possible the time we could remain together, to stay as normal as we could for as long as we could.
In doing that I could hide away my own personal distress until a later time.
Of course this doesn't work 100%, and there were times when something my Jan said made me crack up on the spot.
But mostly we managed.
Never give up on them, no matter how changed they and their behaviours may become - the change is the dementia, not something of their choosing. They are in there, they just may take a little locating.
But you are in the early days yet.
For the moment, learn as much as you can - if you have time - and there is a wealth of knowledge here on TP. Take things slowly and on a day by day basis.
Try to find any diversion for yourself for at least a while each day - give yourself space, too. Don't be too hard on yourself.
best wishes
one of the things about love is that, although the natural thing is to be concerned that our own life has just been wrecked, we usually move quickly from that to - "well, if it is bad for me, just think what it must be like for my wife/husband"
I found that it was invaluable to concentrate entirely on how to change our lives so that we could minimise the distress to my wife, to make as long as possible the time we could remain together, to stay as normal as we could for as long as we could.
In doing that I could hide away my own personal distress until a later time.
Of course this doesn't work 100%, and there were times when something my Jan said made me crack up on the spot.
But mostly we managed.
Never give up on them, no matter how changed they and their behaviours may become - the change is the dementia, not something of their choosing. They are in there, they just may take a little locating.
But you are in the early days yet.
For the moment, learn as much as you can - if you have time - and there is a wealth of knowledge here on TP. Take things slowly and on a day by day basis.
Try to find any diversion for yourself for at least a while each day - give yourself space, too. Don't be too hard on yourself.
best wishes
Hello Sammy
I`m so sorry about he diagnosis for your husband. You are both so young.
My husband was diagnosed in 2005, at the age of 73. I had had grave concerns about his behaviour since 1999, and put that down to depression and turning into a `grumpy old man`.
So although it was a shock, it wasn`t such a surprise.
As we had had quite a lot of sadness before, the diagnosis meant more of the same. Initially, I tried to live life as `normally` as we could, but because of the diagnosis, was able to make allowances for my husband`s behaviour. I think, at the time, the depression was the more difficult issue to manage, as he was unreachable.
There are no rules for managing dementia, we play it by ear as well as we can. I found reading of the experiences of others on TP, and getting their invaluable support, helped ease the isolation and loneliness.
My overwhelming feeling was total compassion for my husband. I tried to think how I would feel if the diagnosis had been mine. I could not imagine it.
And even though he has been so challenging this last few years, I think I am finding ways of making it more bearable, by going along with his unreasonable suggestions and ideas as much as possible, by not challenging him, and by constant reassurance that he is not `going mad`.
Take care, keep posting on TP, there will be a lot of support here for you, and learn as much about the condition as you can.
Love xx
I`m so sorry about he diagnosis for your husband. You are both so young.
My husband was diagnosed in 2005, at the age of 73. I had had grave concerns about his behaviour since 1999, and put that down to depression and turning into a `grumpy old man`.
So although it was a shock, it wasn`t such a surprise.
As we had had quite a lot of sadness before, the diagnosis meant more of the same. Initially, I tried to live life as `normally` as we could, but because of the diagnosis, was able to make allowances for my husband`s behaviour. I think, at the time, the depression was the more difficult issue to manage, as he was unreachable.
There are no rules for managing dementia, we play it by ear as well as we can. I found reading of the experiences of others on TP, and getting their invaluable support, helped ease the isolation and loneliness.
My overwhelming feeling was total compassion for my husband. I tried to think how I would feel if the diagnosis had been mine. I could not imagine it.
And even though he has been so challenging this last few years, I think I am finding ways of making it more bearable, by going along with his unreasonable suggestions and ideas as much as possible, by not challenging him, and by constant reassurance that he is not `going mad`.
Take care, keep posting on TP, there will be a lot of support here for you, and learn as much about the condition as you can.
Love xx
when mum was told she had AZ I had just broken up with my ex of 20 years , my father died the year before and I was trying to find a new direction in my life with my mother in Gibraltar where she had retried to .
then to be told mum had AZ
I put my energy of feeling of sadness into working , just getting on with life . I could not look into the future to much , because of what I would read about what happen as time go by with some with dementia was to scary to for my mind to absurd , call it denial, but it felt better to stay in my hear now then think of that time, other wise I am sure I would not have enjoyed the time we did have together while she had so much more awareness
mum got good medication that slow it all down . when those waves of over flowing emotion hit , oh how I remember how they use to hit me making me feel so low they got worse when I gave up work , because I had so much time to think how my relationship of 20 years had finish , just in the same week as dad died , miss having a man in my life , trying to pretend that I could cope alone
I learn to recognize them acknowledging not be scared of my feeling knowing that crying sodding it all out is not a sigh of weakness , help to relish the tension help me to move on I did writing all my feeling down , sound silly , but I use to write letter to them in my PC , never sent it to them , but saying what I really felt in writing letter to them help me PC crash , never back them up and some time would just delete them , now they all in the past helping me move on with life .
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Hello sammyb.
Firstly you will get much support here on TP - we all have different situations and handle things differently but there is always someone who is managing a 'problem' that you may have.
Initially on diagnosis I was angry and sad. Not with my lovely husband but with the whole wide world!! That faded and my concentration was purely handling each new situation as normally as possible.
I do feel that in a fraught situation for me it is better to walk away! Reason where possible or otherwise wait until the issue has been forgotten.
I have quoted Bruce's comment here as I do believe it has been my 'saviour'. To maintain contact with the outside world is for me very important, either together or separately. Take advantage of friends who are prepared to help you out (e.g. sitting with your husband whilst you have a break). If you do this in the early days your friends will become accustomed to the changes which sadly will
happen.
I am sure you will get many other helpful comments.
Best wishes Beckyjan
Firstly you will get much support here on TP - we all have different situations and handle things differently but there is always someone who is managing a 'problem' that you may have.
Initially on diagnosis I was angry and sad. Not with my lovely husband but with the whole wide world!! That faded and my concentration was purely handling each new situation as normally as possible.
I do feel that in a fraught situation for me it is better to walk away! Reason where possible or otherwise wait until the issue has been forgotten.
.
I have quoted Bruce's comment here as I do believe it has been my 'saviour'. To maintain contact with the outside world is for me very important, either together or separately. Take advantage of friends who are prepared to help you out (e.g. sitting with your husband whilst you have a break). If you do this in the early days your friends will become accustomed to the changes which sadly will
happen.
I am sure you will get many other helpful comments.
Best wishes Beckyjan
Hi Sammyb
For me when Mum was diagnosed my feeling was of relief. She had changed so much towards me during fertility treatment, pregnancy and after the birth of my sons and I thought that it was feelings of jealousy towards my family and resentment that they were taking me "away from her".
With the diagnosis her actions made much more sense to me as she knew something was wrong and had been feeling very very scared but unable to explain.
There was also complete fear and the grief that I knew that an awful illness had alread taken her away from me at a time when I needed my Mum and Best Friend , that my sons would never really know Mum.
It also made our relationship easier as I knew now what the problem was and found it easier to accomodate this..but it was hard as I could not be there for her as my twins were just babies and, try as I might, I couldn't split myself into that many pieces so I did what I could.
There were nights I screamed in frustration and sadness that she was gone before I realised and that My Mum wouldn't be coming back. There were times when I would see her but they were fleeting glances of the woman she had been. For me the acceptance that she wasn't going to be back as "My Mum" and admitting that that personality had gone for good really helped me.
Working through this illness is a rollercoaster ride for everyone concerned.
Love
Mameeskye
For me when Mum was diagnosed my feeling was of relief. She had changed so much towards me during fertility treatment, pregnancy and after the birth of my sons and I thought that it was feelings of jealousy towards my family and resentment that they were taking me "away from her".
With the diagnosis her actions made much more sense to me as she knew something was wrong and had been feeling very very scared but unable to explain.
There was also complete fear and the grief that I knew that an awful illness had alread taken her away from me at a time when I needed my Mum and Best Friend , that my sons would never really know Mum.
It also made our relationship easier as I knew now what the problem was and found it easier to accomodate this..but it was hard as I could not be there for her as my twins were just babies and, try as I might, I couldn't split myself into that many pieces so I did what I could.
There were nights I screamed in frustration and sadness that she was gone before I realised and that My Mum wouldn't be coming back. There were times when I would see her but they were fleeting glances of the woman she had been. For me the acceptance that she wasn't going to be back as "My Mum" and admitting that that personality had gone for good really helped me.
Working through this illness is a rollercoaster ride for everyone concerned.
Love
Mameeskye
Hard to accept
Thank you to everyone who replied to my 'new diagnosis' thread. Having never used this forum before I am uncertain how to reply to individuals as yet. Help needed on that please.
I think the overwhelming feeling I have, along with the sadness, is the utter shock of it all. 5 months ago I thought my guy was fine - physically not in good shape (and hence the operations) but otherwise OK. A clever, strong, determined, witty and very much in control of himself type man who is none of those things now. The deterioration has been so rapid and I can't begin to understand what has happened, how I missed any predisposition, and particularly how he must be feeling inside because he just hasn't the words to describe it. He remains in hospital for the time being and I feel I can't get close enough to him to begin to talk through with him all that he feels and understands. The only thing I can do is visit him and support him in little things but sometimes he seems to become agitated when I am around and I am at a loss as to how to help him.
Thank you to everyone who replied to my 'new diagnosis' thread. Having never used this forum before I am uncertain how to reply to individuals as yet. Help needed on that please.
I think the overwhelming feeling I have, along with the sadness, is the utter shock of it all. 5 months ago I thought my guy was fine - physically not in good shape (and hence the operations) but otherwise OK. A clever, strong, determined, witty and very much in control of himself type man who is none of those things now. The deterioration has been so rapid and I can't begin to understand what has happened, how I missed any predisposition, and particularly how he must be feeling inside because he just hasn't the words to describe it. He remains in hospital for the time being and I feel I can't get close enough to him to begin to talk through with him all that he feels and understands. The only thing I can do is visit him and support him in little things but sometimes he seems to become agitated when I am around and I am at a loss as to how to help him.
Dear Sammyb
This forum is not a "threaded" one so when it come to responding to people you have 2 options. If you want to "quote" someone you can use the "quote" button that is at the bottom right of every post. You can then, if you wish, remove any extraneous information and leave the point you want to address. Make sure you leave in the square brackets and the code within them. Otherwise you can just reply and preface any remarks with the specific posters name e.g.
Jennifer - that makes no sense at all
Best wishes
This forum is not a "threaded" one so when it come to responding to people you have 2 options. If you want to "quote" someone you can use the "quote" button that is at the bottom right of every post. You can then, if you wish, remove any extraneous information and leave the point you want to address. Make sure you leave in the square brackets and the code within them. Otherwise you can just reply and preface any remarks with the specific posters name e.g.
Jennifer - that makes no sense at all
Best wishes
Dear SammyB,
I really feel for you. I was in your position a year ago. My husband aged 51, was admitted to a psychiatric hospital for tests and assessment following a summer of increasingly bizarre behaviour. Gp thought he was suffering from depression and some sort of 'mid life crisis'. After having a MRI scan I was called in and the report was read to me. Cerebral atrophy was mentioned a couple of times - meant nothing to me. Final sentence was 'tests conclusive with Fronto temporal dementia'. At that moment I felt the world had come to an end. Peter shrugged his shoulders, said he was late for dinner and walked out of the room. I read and re read the report and couldn't stop shaking. Took me 2 hours to feel safe enough to drive home.
We've come a long way since then. The first couple of months were very hard. I was in shock and so, so angry with the world. Anything - and I mean anything - would set me off crying. My lifeline was keeping things 'normal' for my children. I gradually looked into the illness, researched everything I could find and did all the practical things like wills, Power of Attorney and claiming for Disability Living Allowance, Council Tax Rebate etc.
A social worker was assigned to us (useless but hope you do better!) and a CPN - community psychiatric nurse. She was, and still is, brilliant. She visits about once a month and speaks to me weekly. She arranged a place at a day centre (only once a week but it all helps) and also set up a local group for younger people with dementia which she invited Peter to attend. She contacted the local Alz Society on my behalf and they have been a huge support. I attended a carer's course run by them and now go to a monthly younger carer's group. Peter goes on monthly day trips out with them as well.
A year ago I couldn't see past the next hour, let alone look the next day or week. But life does go on - albeit very differently. Give yourself lots of time to adjust to the huge changes in your life. I'm not saying that it will be easy, as it isn't, but there will still be good times to be had.
Stay with TP. It has been a lifeline for me. I don't often post, but I do read the messages most days and it helps so much to learn from other's experiences.
Thinking of you.
I really feel for you. I was in your position a year ago. My husband aged 51, was admitted to a psychiatric hospital for tests and assessment following a summer of increasingly bizarre behaviour. Gp thought he was suffering from depression and some sort of 'mid life crisis'. After having a MRI scan I was called in and the report was read to me. Cerebral atrophy was mentioned a couple of times - meant nothing to me. Final sentence was 'tests conclusive with Fronto temporal dementia'. At that moment I felt the world had come to an end. Peter shrugged his shoulders, said he was late for dinner and walked out of the room. I read and re read the report and couldn't stop shaking. Took me 2 hours to feel safe enough to drive home.
We've come a long way since then. The first couple of months were very hard. I was in shock and so, so angry with the world. Anything - and I mean anything - would set me off crying. My lifeline was keeping things 'normal' for my children. I gradually looked into the illness, researched everything I could find and did all the practical things like wills, Power of Attorney and claiming for Disability Living Allowance, Council Tax Rebate etc.
A social worker was assigned to us (useless but hope you do better!) and a CPN - community psychiatric nurse. She was, and still is, brilliant. She visits about once a month and speaks to me weekly. She arranged a place at a day centre (only once a week but it all helps) and also set up a local group for younger people with dementia which she invited Peter to attend. She contacted the local Alz Society on my behalf and they have been a huge support. I attended a carer's course run by them and now go to a monthly younger carer's group. Peter goes on monthly day trips out with them as well.
A year ago I couldn't see past the next hour, let alone look the next day or week. But life does go on - albeit very differently. Give yourself lots of time to adjust to the huge changes in your life. I'm not saying that it will be easy, as it isn't, but there will still be good times to be had.
Stay with TP. It has been a lifeline for me. I don't often post, but I do read the messages most days and it helps so much to learn from other's experiences.
Thinking of you.
Westie - such familiar feelings
Thank you Westie for your response. I have yet to see the MRI report for my husband. I asked for feedback on the outcome and got it very bluntly from a locum hospital doctor - 'he's got cerebral atrophy ....... his brain's shrunk ........ his cognitive function will have deteriorated'. I still don't know whether anything has been mentioned to my husband and I await a meeting with his consultant so that I can get the reality of the diagnosis. After 5 months of being very strong for my husband whilst he went through the 3 operations and medical procedures, I am not sure where our strength will come from to deal with this though I expect it will. I go to the hopsital each day with a plastic smile on my face but as soon as I come out of the hospital's door, I crack up and cry my way to the car park and just sit in the car until I feel able to drive home. I can't bear to see my husband in such mental anguish and turmoil. I have yet to feel anger, just guilt. At the point when he was due to come home after his final medical procedure, I asked for a psychiatric consultation because he still seemed confused, disorientated and to have visual spatial difficulties - long after the medications which made him hallucinate, were no longer being taken. 2 days later he was whisked into the psychiatric hospital and being treated for severe depression. I didn't believe he had that and pushed the hopsital for the SPECT test little knowing what its results would hold.
from Sammyb
Thank you Westie for your response. I have yet to see the MRI report for my husband. I asked for feedback on the outcome and got it very bluntly from a locum hospital doctor - 'he's got cerebral atrophy ....... his brain's shrunk ........ his cognitive function will have deteriorated'. I still don't know whether anything has been mentioned to my husband and I await a meeting with his consultant so that I can get the reality of the diagnosis. After 5 months of being very strong for my husband whilst he went through the 3 operations and medical procedures, I am not sure where our strength will come from to deal with this though I expect it will. I go to the hopsital each day with a plastic smile on my face but as soon as I come out of the hospital's door, I crack up and cry my way to the car park and just sit in the car until I feel able to drive home. I can't bear to see my husband in such mental anguish and turmoil. I have yet to feel anger, just guilt. At the point when he was due to come home after his final medical procedure, I asked for a psychiatric consultation because he still seemed confused, disorientated and to have visual spatial difficulties - long after the medications which made him hallucinate, were no longer being taken. 2 days later he was whisked into the psychiatric hospital and being treated for severe depression. I didn't believe he had that and pushed the hopsital for the SPECT test little knowing what its results would hold.
from Sammyb
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