Brain scan results

[El31]

So I went with mum to get her results and the GP said that scan shows evidence of mild widespread small vessel ischemic change. apparently this is quite common for someone of her age (69). GP is still referring her to memory clinic due to our concerns about her personality. I cant help but feel a bit frustrated this scan didn't show up more, I know that sounds awful but now she thinks shes fine when she clearly is not. I feel it is going to take us years to get a diagnosis

 

[karaokePete]

It can take a long time to get a diagnosis.

My wife's first scan(CT) showed similar damage to your mum's scan and the GP said it was nothing to worry about.

In my wife's case the memory clinic did a lot of testing and arranged firstly an MRI scan and then a PET scan. It was the PET scan that confirmed what the other testing was showing, brain shrinkage in 2 areas, alongside significant vessel damage. Dementia was then diagnosed. In our area all the testing and the additional scans took a very long time.

It's a fact that you may have to keep plugging away before a diagnosis is made, or dementia ruled out.

 

[El31]

Thanks for your reply Pete. I’m very sorry to hear about your wife’s diagnosis. I didn’t know there were other scans that they could do. Fingers crossed the Memory clinic will run more tests

It can take a long time to get a diagnosis.

My wife's first scan(CT) showed similar damage to your mum's scan and the GP said it was nothing to worry about.

In my wife's case the memory clinic did a lot of testing and arranged firstly an MRI scan and then a PET scan. It was the PET scan that confirmed what the other testing was showing, brain shrinkage in 2 areas, alongside significant vessel damage. Dementia was then diagnosed. In our area all the testing and the additional scans took a very long time.

It's a fact that you may have to keep plugging away before a diagnosis is made, or dementia ruled out.

 

[karaokePete]

There can be 2 sides to a diagnosis.

A few years ago my wife's behaviour had become so bad that I decided to leave her and was actively seeking an apartment so that I could move out of our home. The diagnosis explained the behaviours and our lives improved because I was able to understand the behaviours and adjust my reaction while seeking things like appropriate meds, care and personal knowledge to assist my wife.

It's a strange, but true, thing that, even while my wife continues to deteriorate, we have been able to enjoy life most of the time and live well with dementia. There may come a time when we reach a tipping point beyond which things will just be too severe to enable living well with it but I'll work at it with a positive attitude in the meantime - just to see how far I can get!

I have found that good stamina, a thick skin, the ability to be flexible and the ability to get over myself quickly have all helped. I've always has the stamina but the rest have had to be developed since dementia came into our lives.

Keep posting on the forum as you will get both support and wisdom here.

 

[El31]

It must have been very hard for you with the change in behaviours and not having a diagnosis at that time. My dad is also so stressed with her as am I because she is so repetitive, obsessive with things and she has just comes across completely vague and not there, not like the bubbly witty person she used to be. My dad has had to take over doing all the domestic chores because she just can’t be bothered to do anytninf, she puts plates away with food on still etc.. He is very lonely as he talks to her and then she will most of the time just gaze and say ‘pardon’.. luckily he has so many great friends who he can get out to the pub with to have a much needed break. Like you say, having a diagnosis helps you understand more, I feel that we will have a lot more patience when we finally get a diagnosis

 

[marionq]

Are there any Alzheimer’s groups in
Your area. That is how we started. Football memories. Singing groups, walking groups etc. We met lots of people and got invited to events. When my husband then needed daycare it just came as an extension of the groups. When he goes on respite it is an extension of daycare. So thinking ahead it is worth doing.

 

[Izzy]

Picking up from Marion's suggestion, you can find local services by entering your post code in the box in this link-

https://www.alzheimers.org.uk/get-support/your-support-services

I'm not sure how much you can access without an actual diagnosis but it's worth trying.

 

[Lady M]

How’s sympathise with you and your feelings ! My OH was seen by memory clinic in July 2017 and diagnosed MCI plus a referral to neurologist, Brain scan, EEG and many more tests followed, told may be dementia with Lewy Bodies, may not, ??? Symptoms worsened rapidly......confusion caused him to OD on insulin , he was hospitalized. Car had to go , as was becoming a danger, more decline, them hospitalized again possible TIA.
Last seen my neurologist and she said she is loathe to make a diagnosis so refereeing back to memory clinic.
In the meantime OH has lost mobilty and memory has declining.Our world has turned upside down, and I feel we are not able to proceed and deal with things perhaps as we should because we haven’t got a way forward, because still not an official diagnosis!!!!! This is now 2 years plus since I first voiced my concerns.
All I can say is keep on trying for your Mum, as you obviously are! I hope that when you next see the memory nurse you will feel you’re getting somewhere and take some comfort that the brain scans ruled out anything really sinister . You are doing the best for your Mum!
I wish you luck and your Mum !xxx

 

[El31]

Lady M I am so so sorry, it sounds like you have been through hell. I work with people who have dementia for a living as I’m a social worker and it’s amazing how many of them don’t actually have a diagnosis because nobody wants to be the one to diagnose them so they are batted back and forth from professional to professional, it is heartbreaking.
I really hope you and your husband are getting all of the support you need , that you are having support with caring for him but also that you are getting support for yourself too.
I feel with my mum it’s going to be a long road as it’s not so much her memory, it is her personality and odd behaviours.
You take care of yourself xxxx

How’s sympathise with you and your feelings ! My OH was seen by memory clinic in July 2017 and diagnosed MCI plus a referral to neurologist, Brain scan, EEG and many more tests followed, told may be dementia with Lewy Bodies, may not, ??? Symptoms worsened rapidly......confusion caused him to OD on insulin , he was hospitalized. Car had to go , as was becoming a danger, more decline, them hospitalized again possible TIA.
Last seen my neurologist and she said she is loathe to make a diagnosis so refereeing back to memory clinic.
In the meantime OH has lost mobilty and memory has declining.Our world has turned upside down, and I feel we are not able to proceed and deal with things perhaps as we should because we haven’t got a way forward, because still not an official diagnosis!!!!! This is now 2 years plus since I first voiced my concerns.
All I can say is keep on trying for your Mum, as you obviously are! I hope that when you next see the memory nurse you will feel you’re getting somewhere and take some comfort that the brain scans ruled out anything really sinister . You are doing the best for your Mum!
I wish you luck and your Mum !xxx

 

[El31]

Thank you but my mum would not go to a group like that as she believes there is nothing wrong, she volunteers herself for age UK and you wouldn’t actually
Think anything was wrong until you spent a lot of time with her. In many ways she is very able and independent.
Thank you though

Are there any Alzheimer’s groups in
Your area. That is how we started. Football memories. Singing groups, walking groups etc. We met lots of people and got invited to events. When my husband then needed daycare it just came as an extension of the groups. When he goes on respite it is an extension of daycare. So thinking ahead it is worth doing.

 

[WA123]

It must have been very hard for you with the change in behaviours and not having a diagnosis at that time. My dad is also so stressed with her as am I because she is so repetitive, obsessive with things and she has just comes across completely vague and not there, not like the bubbly witty person she used to be. My dad has had to take over doing all the domestic chores because she just can’t be bothered to do anytninf, she puts plates away with food on still etc.. He is very lonely as he talks to her and then she will most of the time just gaze and say ‘pardon’.. luckily he has so many great friends who he can get out to the pub with to have a much needed break. Like you say, having a diagnosis helps you understand more, I feel that we will have a lot more patience when we finally get a diagnosis

Hi El31. I'm with Karaoke Pete on this. We too were on the brink of separating after 40 years together as my husband just wasn't the person I married, we were arguing all the time and I couldn't work out what had happened. He had memory problems but a scan showed no problems and so we went on. he was diagnosed just over a year ago at the age of 58 and we thought our world had come to an end. However as Karaoke Pete says (and he always talks sense I've noticed) with the right strategies in place you can live an almost normal life for quite a while. I would suggest reading 'Contented Dementia' by Oliver James for an optimistic view of the condition. It saved my sanity and helped me to look at what was happening to us from a completely different viewpoint. Life isn't perfect for us and I miss the person my husband used to be (actually my best friend) but things could be a lot worse. Acceptance really is the key. You can't change what's happening but you can change how you deal with it and that's what makes the difference.

 

[AliceA]

I too agree with Pete and WA, changing our attitude is the only thing we can do, developing new coping skills.
There is much I would miss if I thought about it too much, I have learned redefine a new independence for both of us.
It is a shift of less sharing to more caring, finding alternatives. Accepting things as they come.
Dropping that word 'normal'
There is no such thing, we all live in a changing situation with or without dementia or illness.
I have learned not to seek approval, I Self approve and I am my own taskmaker as far as the situation allows.
With a long marriage behind us I can look back and see how this sharing/caring was like a dance, one then the other, occasionally both at the same time.
I do miss the automatic sharing when caught unawares.
I consult in the same way as we use to consult with the children, well thought out options. These are becoming fewer and less often.
With parents it was a slow role reversal using the same tactics but with a different way.

 

[kindred]

I too agree with Pete and WA, changing our attitude is the only thing we can do, developing new coping skills.
There is much I would miss if I thought about it too much, I have learned redefine a new independence for both of us.
It is a shift of less sharing to more caring, finding alternatives. Accepting things as they come.
Dropping that word 'normal'
There is no such thing, we all live in a changing situation with or without dementia or illness.
I have learned not to seek approval, I Self approve and I am my own taskmaker as far as the situation allows.
With a long marriage behind us I can look back and see how this sharing/caring was like a dance, one then the other, occasionally both at the same time.
I do miss the automatic sharing when caught unawares.
I consult in the same way as we use to consult with the children, well thought out options. These are becoming fewer and less often.
With parents it was a slow role reversal using the same tactics but with a different way.

I agree so much. Only thing we can do is to look for any blessings, however small, in another way ... Gxxx

 

[WA123]

I too agree with Pete and WA, changing our attitude is the only thing we can do, developing new coping skills.
There is much I would miss if I thought about it too much, I have learned redefine a new independence for both of us.
It is a shift of less sharing to more caring, finding alternatives. Accepting things as they come.
Dropping that word 'normal'
There is no such thing, we all live in a changing situation with or without dementia or illness.
I have learned not to seek approval, I Self approve and I am my own taskmaker as far as the situation allows.
With a long marriage behind us I can look back and see how this sharing/caring was like a dance, one then the other, occasionally both at the same time.
I do miss the automatic sharing when caught unawares.
I consult in the same way as we use to consult with the children, well thought out options. These are becoming fewer and less often.
With parents it was a slow role reversal using the same tactics but with a different way.

@AliceA I love that sentence 'there is much I would miss if I thought about it too much' (sorry don't know how to do an actual quote). That is exactly how I feel. Every so often I feel myself doing the 'I remember when' and 'if only' but I manage, most of the time, to stop myself as that way madness lies. Life is what it is and I try to make the most of what we have now. Even if my husband is unable to make new memories there's nothing to stop me making them for both of us. He was diagnosed in December 2017 but I would hate to think that when we get to the end all the good memories stopped with that diagnosis.

 

[AliceA]

I agree so much. Only thing we can do is to look for any blessings, however small, in another way ... Gxxx

Xxxx, glad you followed your instinct on Sunday. Always best!

@AliceA I love that sentence 'there is much I would miss if I thought about it too much' (sorry don't know how to do an actual quote). That is exactly how I feel. Every so often I feel myself doing the 'I remember when' and 'if only' but I manage, most of the time, to stop myself as that way madness lies. Life is what it is and I try to make the most of what we have now. Even if my husband is unable to make new memories there's nothing to stop me making them for both of us. He was diagnosed in December 2017 but I would hate to think that when we get to the end all the good memories stopped with that diagnosis.

 

[AliceA]

I agree with you both so much. My husband was diagnose in 2015 but signs of memory decline in 2000.
We are not making many new memories now, but buoy. How we are polishing the old ones.
These I hope will keep us afloat for a long time!

We seldom leave the village or even the home in inclement weather. Walking is not good.
No more travelling. We have just watched a series on the Scottish Lochs and shared memories of the holidays and our time in Scotland. One blessing, no midges!
When my husband watched Rugby, I sat beside him and I found a film about Iona so another holiday from home to share and remember. I love the word re member, to put the bits back together again?
Iona has many special memories for us. Xxx

 

[El31]

Mum has her appointment at the memory clinic next month so hopefully will get more answers. We went out for my cousins leaving do last night and mum just sat there staring blankly in to space for most of the night, she also randomly would interrupt conversations and talk about something completely different.
My dad told me she is now not cooking food properly and it’s always still cold in middle .. my mum was an amazing cook so this is so unlike her. She has also told me today 10 times about her Bowels and how she had diarrhoea but she prayed to god last night and he has healed her and how she thinks she’s got a direct link to god, she told dad and I this story 10 times in half an hour I would say. Love her, she’s so happy in herself but god it’s annoying. Hopefully once we finally get a diagnosis we will have more patience.