My poor Al
- Thread starter Helen33
- Start date
Alan had a good morning. I was able to see clients as I work from home. When I finished work and saw Alan, he was like a different man - worried, stressed, frowning, anxious and going on about 'people' he heard (imaginary people I think).
We went out for lunch because it was too late to cook and I needed some things and he was pretty bad but is now resting.
Oh dear - I'm going to make an appointment to see the GP and am about to ring the Princess Royal Trust.
Love
We went out for lunch because it was too late to cook and I needed some things and he was pretty bad but is now resting.
Oh dear - I'm going to make an appointment to see the GP and am about to ring the Princess Royal Trust.
Love
Sorry, Helen, don't know! I use Yahoo, and read the posts on PPA from time to time -- mostly irrelevant for us now, and in any case the info is almost entirely American.
I'll copy the relevant thread and PM you.
Sorry Alan is still confused, I hope you manage to get some help soon.
Love,
Hello Helen,
I'd agree that Alan sounds "different"...and as Sylvia has said the consultants are usually very amenable if you are concerned.
The other thing that crosses my mind is that it's not unusual after a viral infection to contract a bacterial infection..so it's possible Alan could have a secondary infection which can cause increased confusion.
Re: Yahoo..I also tried to look at that thread..and I do know that if you sign up for Yahoo it's safe..and free..but I didn't have time to do it.
Hope things improve for you, Helen.....
Love gigi xx
I'd agree that Alan sounds "different"...and as Sylvia has said the consultants are usually very amenable if you are concerned.
The other thing that crosses my mind is that it's not unusual after a viral infection to contract a bacterial infection..so it's possible Alan could have a secondary infection which can cause increased confusion.
Re: Yahoo..I also tried to look at that thread..and I do know that if you sign up for Yahoo it's safe..and free..but I didn't have time to do it.
Hope things improve for you, Helen.....
Love gigi xx
The forum is PPA specific, so if that's not what Alan has, it may not be worth your while joining (not trying to put you off, just don't want to waste your time). You may find the FTD forum more useful.
You are all so kind and you make me feel really cared for - thank you.
Hazel - thank you for going to the trouble to post me the content of that link. It has helped me to focus more on our experience and put into words our experience. Alan doesn't wander - he becomes more clingy as if he is afraid (I am sure he is afraid but am not sure of what because it is difficult to understand what he is saying). He seems switched off to the Alan I know - kind of clouded.
Sylvia - Alan's consultant has only seen him once a year ago. He requested loads of different scans and never even had the courtesy to inform us of the results. I mentioned this to our GP and she was appalled and contacted them and insisted that they inform us of the results. I got a very short letter of about 3 lines and an apology because he wouldn't be able to see us for another year!! Everyone I tell this story to has been appalled and I have been left with the firm belief that it's because he said "there is nothing that can be done". The year is up next month I think but I have absolutely no confidence in him or the system at all with regard to Alan's illness. Alan has had excellent treatment for physical ailments such as a hernia op where the staff were excellent in dealing with the issues of dementia and also the cataract dept. are pulling out all the stops and couldn't be more helpful and understanding. Probably it's because there is something that they can do!!
Gigi - Thank you for the point about a bacterial infection. I ran out of time to make an appointment at the GP but it is a priority for tomorrow.
I did, however, get in touch with Crossroads and have left a message for someone to get back to me and I am sure it is the right thing to do. I have mentioned it to Alan because he has had quite some time alone today whilst I've been working and I don't think he can cope with it like he used to. It has to change and when I said I was trying to arrange for somebody to be with him whilst I work he said "that would be nice" and he said it clearly!!! I also got in touch with the Princess Royal Trust but I am not sure at the moment what they have to offer that we can benefit from so they've taken our details and I will get back in touch with them once I've sorted out the sitting service.
It's been a very busy day but we've got through it and I am now thinking about buying a laptop because my computer is in a separate room from our lounge which means more time away from Alan. I'll sort out the sitting service first and then see if there is a need for the computer change.
Love and big thank you's
Hazel - thank you for going to the trouble to post me the content of that link. It has helped me to focus more on our experience and put into words our experience. Alan doesn't wander - he becomes more clingy as if he is afraid (I am sure he is afraid but am not sure of what because it is difficult to understand what he is saying). He seems switched off to the Alan I know - kind of clouded.
Sylvia - Alan's consultant has only seen him once a year ago. He requested loads of different scans and never even had the courtesy to inform us of the results. I mentioned this to our GP and she was appalled and contacted them and insisted that they inform us of the results. I got a very short letter of about 3 lines and an apology because he wouldn't be able to see us for another year!! Everyone I tell this story to has been appalled and I have been left with the firm belief that it's because he said "there is nothing that can be done". The year is up next month I think but I have absolutely no confidence in him or the system at all with regard to Alan's illness. Alan has had excellent treatment for physical ailments such as a hernia op where the staff were excellent in dealing with the issues of dementia and also the cataract dept. are pulling out all the stops and couldn't be more helpful and understanding. Probably it's because there is something that they can do!!
Gigi - Thank you for the point about a bacterial infection. I ran out of time to make an appointment at the GP but it is a priority for tomorrow.
I did, however, get in touch with Crossroads and have left a message for someone to get back to me and I am sure it is the right thing to do. I have mentioned it to Alan because he has had quite some time alone today whilst I've been working and I don't think he can cope with it like he used to. It has to change and when I said I was trying to arrange for somebody to be with him whilst I work he said "that would be nice" and he said it clearly!!! I also got in touch with the Princess Royal Trust but I am not sure at the moment what they have to offer that we can benefit from so they've taken our details and I will get back in touch with them once I've sorted out the sitting service.
It's been a very busy day but we've got through it and I am now thinking about buying a laptop because my computer is in a separate room from our lounge which means more time away from Alan. I'll sort out the sitting service first and then see if there is a need for the computer change.
Love and big thank you's
Hello Helen.
I am appalled at the attitude of Alan`s consultant and would ask for a referral to another.
Dhiren`s consultants have been so supportive, even if there is nothing that can be done. They have kept a regular check on Dhiren so when we had the crisis in May, they knew him well enough to know he acted out of character.
And they have been particularly supportive to me.
I am appalled at the attitude of Alan`s consultant and would ask for a referral to another.
Dhiren`s consultants have been so supportive, even if there is nothing that can be done. They have kept a regular check on Dhiren so when we had the crisis in May, they knew him well enough to know he acted out of character.
And they have been particularly supportive to me.
Dear Sylvia
I have been told he's the best so I wouldn't know who else to see. When I see him I am thinking about telling him of the lasting impression he has made upon me and the negative effects of that. I wonder whether it's because Dhiren has Alzheimers and this consultant told me that if Alan had alzheimers there were certain things that could be done. He said in Alan's case there is nothing that can be done. All this in the context that this was our first appointment with anyone apart from the GP with regard to his illness. I can cope with the fact that nothing can be done medically but I can't cope with the fact that this means that Alan is shoved to one side. I believe that there is plenty that can be done because 'it's being done' TP is doing something, the woman from the Alzheimer's soc. didn't come and say "there is nothing that can be done" and then disappear.
One other thing that might have contributed to the consultant's disinterest is that he showed animated interest in Alan having FTD as he then suspected (confirmed by scan results) and he wanted Alan to be involved in some research a colleague of his was conducting in London. I spoke to Alan about this for some considerble weeks and in the end he said "no" because he was frightened and couldn't face a continuous experience of feeling demeaned by being asked questions that he could not answer. From the moment of saying "no", Alan ceased to exist. I know this is probably coincidence but it is part of the devastating impression that I have been left with.
For anyone else who may read this latter part, it is solely my experience and is more than likely to be coincidence and other people have had very positive experiences.
Love
I have been told he's the best so I wouldn't know who else to see. When I see him I am thinking about telling him of the lasting impression he has made upon me and the negative effects of that. I wonder whether it's because Dhiren has Alzheimers and this consultant told me that if Alan had alzheimers there were certain things that could be done. He said in Alan's case there is nothing that can be done. All this in the context that this was our first appointment with anyone apart from the GP with regard to his illness. I can cope with the fact that nothing can be done medically but I can't cope with the fact that this means that Alan is shoved to one side. I believe that there is plenty that can be done because 'it's being done' TP is doing something, the woman from the Alzheimer's soc. didn't come and say "there is nothing that can be done" and then disappear.
One other thing that might have contributed to the consultant's disinterest is that he showed animated interest in Alan having FTD as he then suspected (confirmed by scan results) and he wanted Alan to be involved in some research a colleague of his was conducting in London. I spoke to Alan about this for some considerble weeks and in the end he said "no" because he was frightened and couldn't face a continuous experience of feeling demeaned by being asked questions that he could not answer. From the moment of saying "no", Alan ceased to exist. I know this is probably coincidence but it is part of the devastating impression that I have been left with.
For anyone else who may read this latter part, it is solely my experience and is more than likely to be coincidence and other people have had very positive experiences.
Love
I get that attitude also from mum consultant , She says
" There nothing more that we can do for your mother "
Now its
" You Know its Only Gets worse " .
She told me in my face onces last year . that there nothing more that can be done for your mother .
Then when mum had changes in her dementia & the AZ Day center said that mum should have a review with the consultant, there was a few of us talking about mum after her review .
She denied to me in fount of every one that she said " There is nothing more that we can do for your mother .
So she turn it around looking at me saying saying " you Know it only going to get worse ? ( well of course I know that )
Then says I shall get in contact with social services write a report to them make sure you get higher support . Make sure you take all the respite that is on offer.
Last edited:
A bit of an update
I had to go to a meeting today and asked Alan if he wanted to come or did he prefer to stay at home. I was hoping that he'd come because he looked rather vulnerable but he said he would stay at home. A little while later he said he would come because it was better than being here on his own!
He came and he did well to say that he just had to sit there for an hour.
I rang Crossroads and they referred me to Social Services who would do an assessment of the needs. Hopefully then they will refer us back to Crossroads. With a prayer and a bit of luck we might get funding for a sitting service - watch this space!
The one thing that is certain now is that it is clear that it is needed. Things have changed here and there is no longer any doubt.
Love
I had to go to a meeting today and asked Alan if he wanted to come or did he prefer to stay at home. I was hoping that he'd come because he looked rather vulnerable but he said he would stay at home. A little while later he said he would come because it was better than being here on his own!
He came and he did well to say that he just had to sit there for an hour.
I rang Crossroads and they referred me to Social Services who would do an assessment of the needs. Hopefully then they will refer us back to Crossroads. With a prayer and a bit of luck we might get funding for a sitting service - watch this space!
The one thing that is certain now is that it is clear that it is needed. Things have changed here and there is no longer any doubt.
Love
Hi Helen
Things have changed, but things do change -- and sadly will continue to change.
But at least you are aware of the change, and know what to do to get help, and are prepared to do what it takes.
Well done, I hope you get your assessment soon, and get the support you need.
Love,
Things have changed, but things do change -- and sadly will continue to change.
But at least you are aware of the change, and know what to do to get help, and are prepared to do what it takes.
Well done, I hope you get your assessment soon, and get the support you need.
Love,
Thanks, Helen.
yes, his heel is improving, though still infected. And this evening he was 'chesty' again.
It's just one infection after another!
Love,
yes, his heel is improving, though still infected. And this evening he was 'chesty' again.
It's just one infection after another!
Love,
Have got my fingers crossed for you already.
You have acknowledged that you need some more support. I do so admire you for that. Let us hope that something is forthcoming,
so that Alan can feel more settled and comfortable, when you cannot be with him.
Take care now,
You have acknowledged that you need some more support. I do so admire you for that. Let us hope that something is forthcoming,
so that Alan can feel more settled and comfortable, when you cannot be with him.
Take care now,
