Pet scan

[Louhelp1234]

Sorry to bother you just wondered anyone have any ideas how long the waiting list is usually for a pet scan,
Expected to get my mums diagnosis today but now told she's got to have Pet scan as ct scan came back clear.
Consultant thinks it's either althziemers vascular dementia or mixed dementia. Not really sure what mixed is.
Total disaster I'm now officially on the naughty step,
Consultant to my mum do you know why your here. Asked my mum loads of questions how she's coping. According to my mum she has no problems no struggles makes her own food showers in a morning bath at night. No safety issues no meditissues and she's no idea why she's there.
Consultant then asked me and my aunt if we thought the same and refer to my letter that detailed all the issues my mum has my Aunty backed me up giving examples.
Now my mum thinks we are the enemy and she's well we're just making it up.
Total nightmare feel so desperate
Any advice more than welcome xx

 

[canary]

All of this is hard. How long you have to wait for a PET scan depends where you are and how urgent the consultant thinks it is. We waited about 6 weeks.

Consultant thinks it's either althziemers vascular dementia or mixed dementia. Not really sure what mixed is.

Mixed is 2 or more different types of dementia present at the same time - usually it is a mixture of Alzheimers and vascular dementia, but could be any types. Sometimes doctors use this as a lazy way of saying - well, its dementia, but blowed if I know what type. If you are having a PET scan, though it sounds like the consultant is taking the diagnosis seriously.

 

[Louhelp1234]

Thx Canary yet again you are so helpful and informative means a lot xxx

 

[Duggies-girl]

When the girl from the memory clinic asked my dad 'do you know why i am here' dad replied ' yes you have come to see if I am going barmy' His exact words. He can be be very funny at times.

When she said 'I am going to send you for a head scan' he said very surprised 'a head stand I don't know if I can do that now' It was a nice appointment but I know he failed his test.

To be honest the time taken from the first visit to his GP in middle of August to memory nurse this coming this Thursday with his result I think it has all happened very quickly. Just over 3 months and he has had his memory test and his scan and results due. I think his GP got it rushed through.

 

[Kevinl]

It's a post code lottery, from the GP finally accepting my wife had issues he refered her for an MRI scan, got the results, referred her to a memory clinic, we attended and they sent her for a SPECT scan, back to the memory clinic and a diagnosis of "Early Onset, Mixed, Atypical AZ" all in about 10 weeks, I heard of people on here waiting that long for an appointment with the memory clinic alone let alone getting all the tests done.
On the other matter you mention, I think you've made a mistake "siding with the enemy", I and others on here have said this before, if someone is in denial then you have to side with then if you want to make it work.
I always agreed with my wife who was in total denial so we went there to prove them wrong, on that basis I could get her to go. We were always seen together then apart and then together again. First part was an overview by the consultant and a nurse or junior doctor, she then stayed with the consultant while I talked to the nurse/doctor, they then consulted and we were asked back in.
I never had to say anything negative in my wife's presence the nurse/doctor that got passed on when they consulted. Denial seems very much to be the norm so they're well used to it and know how to say the right things. Remember they've seen this situation possibly 1,000's of times to you it's a first, they're well used to it.
K

 

[Peachez]

Awww, bless you @Louhelp1234 , I know how you feel, I had to keep a secret diary on my OH, and pipe up in consultations when he'd say 'I'm fine' . Consultant gave the game away about the diary one day too.. my name was mud! She will get over it, if she is fine, then the PET scan will be clear won't it? And wouldn't it be a useful baseline in case needed when she was older??

My OH had a SPECT (single positron emission computerised tomography) which may well have significant differences from a PET . For us it diagnosed MCI, and serious enough for the Consultant to make a home visit to tell us!!

 

[karaokePete]

My wife had MRI and CT scans and both showed just vascular damage. Based on this and her tests & interviews she got the 'Mixed Alzheimer's and Vascular Dementia' provisional diagnosis. A PET scan was arranged and the appointment took 5 months to come through with the result a week after. The PET scan showed shrinkage in both the language and memory centres in the brain and the diagnosis of Alzheimer's was confirmed.
The scans were useful as Donepezil was prescribed after the CT and MRI scans and it seemed to help. After the PET scan Memantine was added and this seemed to help a bit more. Not a cure, of course, but a very slight improvement.

 

[Louhelp1234]

When the girl from the memory clinic asked my dad 'do you know why i am here' dad replied ' yes you have come to see if I am going barmy' His exact words. He can be be very funny at times.

When she said 'I am going to send you for a head scan' he said very surprised 'a head stand I don't know if I can do that now' It was a nice appointment but I know he failed his test.

To be honest the time taken from the first visit to his GP in middle of August to memory nurse this coming this Thursday with his result I think it has all happened very quickly. Just over 3 months and he has had his memory test and his scan and results due. I think his GP got it rushed through.

Hi Duggies girl thank so much for reaching out to me. Firstly hope the diagnosis goes well.
Sounds similar to my mum gp appointment was July ct scan addenbrokes test cpn observations done diagnosis should have been done 2 oct but ct scan came back clear. So cpn said consultant thought was althziemers based on addenbrokes test and cpn observations but wanted to see my mum in person to diagnose. Which was today only now to be told they now need to do Pet scan.
So I suppose if ct scan had come back with problem she'd have been diagnosed ages ago. Lol trust my mum to be difficult.
Will be thinking of you in Thursday please let me know how you get on. Have been following your story as we started on here about the same time, big hugs and much love xx

 

[Louhelp1234]

It's a post code lottery, from the GP finally accepting my wife had issues he refered her for an MRI scan, got the results, referred her to a memory clinic, we attended and they sent her for a SPECT scan, back to the memory clinic and a diagnosis of "Early Onset, Mixed, Atypical AZ" all in about 10 weeks, I heard of people on here waiting that long for an appointment with the memory clinic alone let alone getting all the tests done.
On the other matter you mention, I think you've made a mistake "siding with the enemy", I and others on here have said this before, if someone is in denial then you have to side with then if you want to make it work.
I always agreed with my wife who was in total denial so we went there to prove them wrong, on that basis I could get her to go. We were always seen together then apart and then together again. First part was an overview by the consultant and a nurse or junior doctor, she then stayed with the consultant while I talked to the nurse/doctor, they then consulted and we were asked back in.
I never had to say anything negative in my wife's presence the nurse/doctor that got passed on when they consulted. Denial seems very much to be the norm so they're well used to it and know how to say the right things. Remember they've seen this situation possibly 1,000's of times to you it's a first, they're well used to it.
K

Hi Kevin
Thanks so much for reaching out to me sorry to here about your wife hope she's doing as well as she can.
Yeah totally got backed into corner. Had learnt from experience and reading on here not to point out failings in front of my mum.
Thought I had it Sussed have private chats with cpn. Wrote full frank letter to consultant giving full details. Purposely so I didn't have to do what happened today.
But oh no after my mum said she's fine no problems concerns etc consultant said to me do you agree or do you still stand by your letter listing all the problems. Jeez thanks for that. As you can imagine my mum was thrilled at me.
Anyway many thanks for reaching out big hugs and lots of love xx

 

[Louhelp1234]

Awww, bless you @Louhelp1234 , I know how you feel, I had to keep a secret diary on my OH, and pipe up in consultations when he'd say 'I'm fine' . Consultant gave the game away about the diary one day too.. my name was mud! She will get over it, if she is fine, then the PET scan will be clear won't it? And wouldn't it be a useful baseline in case needed when she was older??

My OH had a SPECT (single positron emission computerised tomography) which may well have significant differences from a PET . For us it diagnosed MCI, and serious enough for the Consultant to make a home visit to tell us!!

Hi Peachez many thanks for reaching out to me. Sorry to hear about oh hope they doing as well as can be expected.
Yeah totally sprung me I thought jeez thanks for that my mum was thrilled. Hopefully short term memory is as bad with that as normal things so she forgets she's mad at me tomorrow when I take her shopping or that will be a fun time.
Thx again for taking trouble to reply big hugs and lots of love xx

 

[Louhelp1234]

My wife had MRI and CT scans and both showed just vascular damage. Based on this and her tests & interviews she got the 'Mixed Alzheimer's and Vascular Dementia' provisional diagnosis. A PET scan was arranged and the appointment took 5 months to come through with the result a week after. The PET scan showed shrinkage in both the language and memory centres in the brain and the diagnosis of Alzheimer's was confirmed.
The scans were useful as Donepezil was prescribed after the CT and MRI scans and it seemed to help. After the PET scan Memantine was added and this seemed to help a bit more. Not a cure, of course, but a very slight improvement.

Hi Pete sorry to hear about your wife but pleased she's doing as well as can be expected.
Sounds very similar then the consultant said could be althziemers or vascular or both but coz ct scan came back clear they need to do pet scan, she's also got to have ecg as she used to have irregular heartbeat so needs to make sure that ok too.
I think the waiting is the worst.
Anyway many thanks for taking the time to reach out to me big hugs and much love xx

 

[karaokePete]

I think the ECG is standard for Alzheimer's drugs with some, if not all, GPs. My wife has to have one each time the meds get altered!

 

[Louhelp1234]

I think the ECG is standard for Alzheimer's drugs with some, if not all, GPs. My wife has to have one each time the meds get altered!

Thanks Pete, yeah also what first started my mums health problems off,

Not the anxiety she got very anxious lives alone lost two pets that she'd had for 14-15 years, they were her best friends and they both died with in 6 weeks. So that set off the anxiety.

But just before the memory problems she started struggling for her breath she used to have asthma so I presumed it was an asthma attack probably bought on by anxiety/stress. she took her inhaler and it didn't work. So I took her up to the gp, expecting them to say it was asthma. However they listened to her heart/chest etc and thought something was a miss. Did ecg and straight away diagnosed her with irregular heart beat. for a while she had to have heart tablets and warfin. But the heart beat was corrected with think it's called airibrilation (like a jump start on the heart)
But before the period with the heart she hadn't had any memory problems. The memory problems seemed to instantly start once she was diagnosed with irregular heart beat. If that makes sense. Also the anxiety got even worse.
So consultant said cos of her history she needs ecg. I really hope that comes back ok cos I think if anything else happens it will really push her over the edge.

She's currently not my friend, will be interesting this morning when I take her food shopping. She thinks I've betrayed her by not agreeing with her that she's fine with no problems.
I really thought I'd covered all the basis by writing down the letter detailing everything. I'd did everything in my power to make sure that I didn't have to talk about her in front of her. But it all backfired. I'm totally gutted and feel like I've failed her.
Sorry for the rant not really slept between worrying about what the PET Scan to worrying about the ECG, to worrying about how hurt she is with me, to worrying about the long term implications of it all for my mum, me and my family.
So now I'm trying to do full days work on limited sleep.

Hope you are doing ok, and many thanks for reaching out. And sincere apologies for the rant xxx

 

[karaokePete]

Thanks Pete, yeah also what first started my mums health problems off,

Not the anxiety she got very anxious lives alone lost two pets that she'd had for 14-15 years, they were her best friends and they both died with in 6 weeks. So that set off the anxiety.

But just before the memory problems she started struggling for her breath she used to have asthma so I presumed it was an asthma attack probably bought on by anxiety/stress. she took her inhaler and it didn't work. So I took her up to the gp, expecting them to say it was asthma. However they listened to her heart/chest etc and thought something was a miss. Did ecg and straight away diagnosed her with irregular heart beat. for a while she had to have heart tablets and warfin. But the heart beat was corrected with think it's called airibrilation (like a jump start on the heart)
But before the period with the heart she hadn't had any memory problems. The memory problems seemed to instantly start once she was diagnosed with irregular heart beat. If that makes sense. Also the anxiety got even worse.
So consultant said cos of her history she needs ecg. I really hope that comes back ok cos I think if anything else happens it will really push her over the edge.

She's currently not my friend, will be interesting this morning when I take her food shopping. She thinks I've betrayed her by not agreeing with her that she's fine with no problems.
I really thought I'd covered all the basis by writing down the letter detailing everything. I'd did everything in my power to make sure that I didn't have to talk about her in front of her. But it all backfired. I'm totally gutted and feel like I've failed her.
Sorry for the rant not really slept between worrying about what the PET Scan to worrying about the ECG, to worrying about how hurt she is with me, to worrying about the long term implications of it all for my mum, me and my family.
So now I'm trying to do full days work on limited sleep.

Hope you are doing ok, and many thanks for reaching out. And sincere apologies for the rant xxx

A few things spring to mind:-
No need to apologise for a rant. No better place than here for rants. Have two, they're free!!

A medical complaint or other life event can cause a downturn in dementia - I've read about it time and again. Indeed, even though my wife isn't entitled through age I got her a free flu jab this year on the basis that an illness could cause a downturn in her dementia.

It's common for the person with dementia to go into denial and blame those around them. I had that with my wife who blamed her diagnosis on what I must have been saying to the doctors. With me it was lucky that my wife could still accept a little bit of reason and I just asked her why she was being seen by doctors and the cash strapped NHS were spending so much money on her and why I was having to do so much for her if there was nothing wrong with her. I told her I would stop wasting my time on her if there was nothing wrong. I also told her that what I said to the doctors was just used to corroborate the test/scan results and that no doctor would diagnose on just what a third party was saying. To back up the latter statement I asked for a copy of the Consultants report so that my wife could read why she was being diagnosed with dementia. This all worked for me. My wife can no longer remember those conversations but the idea that she does indeed have dementia still sticks in her brain.

As to feeling tired - I can't help as I'm in the same boat. Indeed, at the time that my wife was being seen by every specialist under the sun I was exhausted. However, diagnosis is now complete, meds have been prescribed, life has slowed down a little and I'm back to just being tired.

Don't feel guilty. You are doing your best and no one can ask for more. As to the future, you are experiencing a grief like that of a bereavement relating to the loss of your planned future. It's a common thing and my wife and I both felt it. Like any grief response it takes time to heal. Be as gentle with yourself as you can.

 

[Louhelp1234]

A few things spring to mind:-
No need to apologise for a rant. No better place than here for rants. Have two, they're free!!

A medical complaint or other life event can cause a downturn in dementia - I've read about it time and again. Indeed, even though my wife isn't entitled through age I got her a free flu jab this year on the basis that an illness could cause a downturn in her dementia.

It's common for the person with dementia to go into denial and blame those around them. I had that with my wife who blamed her diagnosis on what I must have been saying to the doctors. With me it was lucky that my wife could still accept a little bit of reason and I just asked her why she was being seen by doctors and the cash strapped NHS were spending so much money on her and why I was having to do so much for her if there was nothing wrong with her. I told her I would stop wasting my time on her if there was nothing wrong. I also told her that what I said to the doctors was just used to corroborate the test/scan results and that no doctor would diagnose on just what a third party was saying. To back up the latter statement I asked for a copy of the Consultants report so that my wife could read why she was being diagnosed with dementia. This all worked for me. My wife can no longer remember those conversations but the idea that she does indeed have dementia still sticks in her brain.

As to feeling tired - I can't help as I'm in the same boat. Indeed, at the time that my wife was being seen by every specialist under the sun I was exhausted. However, diagnosis is now complete, meds have been prescribed, life has slowed down a little and I'm back to just being tired.

Don't feel guilty. You are doing your best and no one can ask for more. As to the future, you are experiencing a grief like that of a bereavement relating to the loss of your planned future. It's a common thing and my wife and I both felt it. Like any grief response it takes time to heal. Be as gentle with yourself as you can.

Hey Pete
Thanks so much for reaching out with so
Much compassion and wise words.
You made a lot of sense. Seen my mum today she's heartbroken but also very angry she thinks me and my aunt betrayed her and now the dr thinks she's got dementia. Tried to reason with her but she didn't want to know. So gave well tried to give her a hug told her I loved her and sobbed all the way home.
This morning head of care team that looks after my mum said the carer was really concerned as my mum was wondering on the street looking for the carer sobbing coz she thinks she's got dementia and can't trust anyone this whole situation is so heartbreaking.
I'm really pleased things are a little bit better for you. Your showing their can be a glimmer of light at the end of the tunnel big hugs and thanks again xxx

 

[karaokePete]

You will struggle to 'reason' with a PWD. the following thread is useful:-

Recommended thread Compassionate Communication with the Memory Impaired
Discussion in 'Health and wellbeing' started by Grannie G, Jan 24, 2011.

 

[Louhelp1234]

You will struggle to 'reason' with a PWD. the following thread is useful:-

Recommended thread Compassionate Communication with the Memory Impaired
Discussion in 'Health and wellbeing' started by Grannie G, Jan 24, 2011.

hi Pete many thanks as always just read it and it's brilliant am going to print it out and give to my relatives that don't have access to the internet. Thanks so much your continued support is amazing means a lot hope you doing ok.
Joining this site was one of the best decisions I've made the people are so lovely and helpful even though they all have there own problem tgats truly amazing many thanks xx