A life in the day of.........................
- Thread starter Grannie G
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The Consultant called today..........
Dhiren opened the door to him and let him in.
He thought his file was a catalogue and asked what he was selling.
He said he cancelled the appointment because there is nothing wrong with him.
He knew which town he was in.
He knew which building and recited our address.
He knew it was Monday.
He didn`t know the date or the year. He said his memory is bad.
He knew he was on the ground floor and told the consultant it could only be, as we were in a bungalow.
The consultant was impressed, he thought Dhiren was doing better because he was more comfortable and felt more secure in his own home.
He only remembered `apple`. He forgot `table` and `penny`, but gave us `shoes`, `socks`, `trousers`, `chair`.
We were entertained.
He was adamant he would take no more tablets , when I ask for something for emergencies.
He knows he has sundowning but it doesn`t last long and he has learnt to live with it. [I wish I had learnt to live with it.]
He said he would `think about attending` the next appointment.
But he doesn`t need a doctor now and if he does, will phone for one.
His score was 16 , down 1, but the consultant felt he was brighter and sharper and told him he was very pleased with him.
He will see him in 6 months.
Dhiren opened the door to him and let him in.
He thought his file was a catalogue and asked what he was selling.
He said he cancelled the appointment because there is nothing wrong with him.
He knew which town he was in.
He knew which building and recited our address.
He knew it was Monday.
He didn`t know the date or the year. He said his memory is bad.
He knew he was on the ground floor and told the consultant it could only be, as we were in a bungalow.
The consultant was impressed, he thought Dhiren was doing better because he was more comfortable and felt more secure in his own home.
He only remembered `apple`. He forgot `table` and `penny`, but gave us `shoes`, `socks`, `trousers`, `chair`.
We were entertained.
He was adamant he would take no more tablets , when I ask for something for emergencies.
He knows he has sundowning but it doesn`t last long and he has learnt to live with it. [I wish I had learnt to live with it.]
He said he would `think about attending` the next appointment.
But he doesn`t need a doctor now and if he does, will phone for one.
His score was 16 , down 1, but the consultant felt he was brighter and sharper and told him he was very pleased with him.
He will see him in 6 months.
How do you feel about that, Sylvia?
In a way, it's good that Dhiren did so well, but it does rather leave you in limbo!
Love,
In a way, it's good that Dhiren did so well, but it does rather leave you in limbo!
Love,
Hello Hazel
It certainly does leave me in limbo. I don`t know how I feel.
Paul is noticing a sharp decline, a big change, but Dhiren can still present relatively well.
Joanne`s husband thought Dhiren was much better than Joanne had led him to believe, but Dhiren was quiet all evening and when he did speak, spoke quite well. He just seemed like an old man, a bit hesitant, a bit boring, but OK.
During a home visit, the consultant saw a Dhiren who had recognition of his condition and insight, but I hope he realized it cannot be sustained.
I can phone if I have any concerns, otherwise just plod on as best we can.
It certainly does leave me in limbo. I don`t know how I feel.
Paul is noticing a sharp decline, a big change, but Dhiren can still present relatively well.
Joanne`s husband thought Dhiren was much better than Joanne had led him to believe, but Dhiren was quiet all evening and when he did speak, spoke quite well. He just seemed like an old man, a bit hesitant, a bit boring, but OK.
During a home visit, the consultant saw a Dhiren who had recognition of his condition and insight, but I hope he realized it cannot be sustained.
I can phone if I have any concerns, otherwise just plod on as best we can.
I imagine you feel let down by both of them, Sylvia.
The consultant seems to have had tunnel vision, taking no regard of YOUR need for help.
Dhiren sounds as if he went straight into self-defence mode, again seemingly with no thought for your strain & distress
(but at least he has the 'excuse' of being ill with a dementia).
The consultant seems to have had tunnel vision, taking no regard of YOUR need for help.
Dhiren sounds as if he went straight into self-defence mode, again seemingly with no thought for your strain & distress
(but at least he has the 'excuse' of being ill with a dementia).
Hello Lynne
When he is in self preservation mode Dhiren doesn`t think for a minute I need any support. He is the one with the illness, I should thank my lucky stars I don`t have it.
It is only when he has his bad heads/episodes/lapses, he considers himself a burden, asks for help or wants to see a doctor.
The Consultant did ask me a few times if I was managing, and how I was, but with Dhiren in such fighting spirit there was little I could say.
While he was being so positive, I really didn`t want to say what a pain he is at times. And I was slapped down immediately I mentioned emergency medication, so what more could I do.
I only hope the consultant read between the lines and used his knowledge of Dhiren to form an opinion.
When he is in self preservation mode Dhiren doesn`t think for a minute I need any support. He is the one with the illness, I should thank my lucky stars I don`t have it.
It is only when he has his bad heads/episodes/lapses, he considers himself a burden, asks for help or wants to see a doctor.
The Consultant did ask me a few times if I was managing, and how I was, but with Dhiren in such fighting spirit there was little I could say.
While he was being so positive, I really didn`t want to say what a pain he is at times. And I was slapped down immediately I mentioned emergency medication, so what more could I do.
I only hope the consultant read between the lines and used his knowledge of Dhiren to form an opinion.
That pretty much sums up what we are doing.
We have seen the difference with my mum's illness. There is a whole strategy in place already. When it comes to dementia we have no confidence that the 'experts' have any more idea how to deal with it than we do. Not their fault... just this bloody disease...
We have a meeting with my Dad's consultant tomorrow. I have drafted a letter with our questions, but I have no confidence that we will get any answers.
Love to you and Dhiren.
Thanks Sue
There are tests for your mother and depending on the outcome of the tests, follow up treatment.
With dementia, it is really a matter of observation. There is no cure, no treatment, no surgery. Perhaps some of the symptoms might be eased, or masked, but observation seems to be the only course of action.
I do hope your mother does well Sue.
There are tests for your mother and depending on the outcome of the tests, follow up treatment.
With dementia, it is really a matter of observation. There is no cure, no treatment, no surgery. Perhaps some of the symptoms might be eased, or masked, but observation seems to be the only course of action.
I do hope your mother does well Sue.
Hello Sylvia
I just wanted to say that I have been thinking about you and Dhiren and feel very disappointed but not totally surprised considering our experiences with Alan's consultant! There seems to be a build up of anticipation and hope only to discover that change is only going to come about if we push for it.
I seem to be running on flat at the moment and don't feel able to contribute anything worth listening to but I did want to say that you are very much in my thoughts.
Love and best wishes
I just wanted to say that I have been thinking about you and Dhiren and feel very disappointed but not totally surprised considering our experiences with Alan's consultant! There seems to be a build up of anticipation and hope only to discover that change is only going to come about if we push for it.
I seem to be running on flat at the moment and don't feel able to contribute anything worth listening to but I did want to say that you are very much in my thoughts.
Love and best wishes
To all who have expressed disappointment...............
What more could I have expected from the consultant?
He came, he saw, he asked, he listened. What else could he have done?
Dhiren is being monitored and observed. The help would be there in a crisis. He is still able to decide whether or not he wants drugs to calm him. When he is calm it is impossible for him to see himself in distress.
He was more confident than the consultant had even seen him. He was assertive but not aggressive.
He acknowledged his sundowning, acknowledged his `bad heads`. All he was unable to acknowledge is the effect it has on me. But there is no solution to the effect it is having on me because there is no solution to dementia.
I`m happy he is being monitored, happy I have the support of a wonderful CPN and know where to go if I need help.
What more could I have expected from the consultant?
He came, he saw, he asked, he listened. What else could he have done?
Dhiren is being monitored and observed. The help would be there in a crisis. He is still able to decide whether or not he wants drugs to calm him. When he is calm it is impossible for him to see himself in distress.
He was more confident than the consultant had even seen him. He was assertive but not aggressive.
He acknowledged his sundowning, acknowledged his `bad heads`. All he was unable to acknowledge is the effect it has on me. But there is no solution to the effect it is having on me because there is no solution to dementia.
I`m happy he is being monitored, happy I have the support of a wonderful CPN and know where to go if I need help.
Sylvia, you're absolutely right.
The consultant can test for deterioration, decide what medication is appropriate (if any), and provide CPN support, which he has done.
Everything else is down to social services, who are sometimes supportive, sometimes not. And sometimes talk to the CPN, and sometimes don't!
You're right, the consultant did what he was supposed to do.
Still leaves you in limbo, though, doesn't it?
Love,
Dear Sylvia.....
I can only echo what Helen has said....
I could have written that myself....(Thanks Helen.......and sorry you're having a rought time too...)
Love gigi xx
I can only echo what Helen has said....
I could have written that myself....(Thanks Helen...
....and sorry you're having a rought time too...)Love gigi xx
changing seasons
Goodmorning Hazel & Helen, sorry you are both feeling down at the moment, you are both usually so positive, I also feel a strange sadness today, cannot put my finger on it, nothing happened any different, just have this sick feeling in my stomach, maybe it is the thought of long dark nights, and not alot to look forward to, am going to give myself a good talking to and think about my grandchildren ,that usually pulls me out of the doldrums, hope you both will feel brighter tomorrow we have been promised some sun, can just see you and dirhen at your lovely bandstand. hope the sundowning does not appear to day. I now just take myself away to another part of the house when Trev starts to sundown, because i can be of no help to him at these times, i know that sounds awful but i have to survive and cope somehow . this desease just consumes us dosn't itlove Pam
Goodmorning Hazel & Helen, sorry you are both feeling down at the moment, you are both usually so positive, I also feel a strange sadness today, cannot put my finger on it, nothing happened any different, just have this sick feeling in my stomach, maybe it is the thought of long dark nights, and not alot to look forward to, am going to give myself a good talking to and think about my grandchildren ,that usually pulls me out of the doldrums, hope you both will feel brighter tomorrow we have been promised some sun, can just see you and dirhen at your lovely bandstand. hope the sundowning does not appear to day. I now just take myself away to another part of the house when Trev starts to sundown, because i can be of no help to him at these times, i know that sounds awful but i have to survive and cope somehow . this desease just consumes us dosn't itlove Pam
Crossroads
I`ve done so well up to now with the support I`ve been given perhaps I`ll be the one to break the mold with Crossroads.
The person who visited a month ago phoned today as promised, but seems very unenthusiastic about introducing a carer to Dhiren. I accept he`s a challenge, I told her he isn`t too happy about having people in and asked her advice. She was not forthcoming at all.
I told her I was unhappy with the questions she asked and the comments she made when she visited. I don`t think she understood what I was talking about.
All she said was when she has someone available she will give me a ring.
I think I will explore direct payments. Does anyone know if I can use direct payments for housework etc. and then I will look after Dhiren myself.
I`ve done so well up to now with the support I`ve been given perhaps I`ll be the one to break the mold with Crossroads.
The person who visited a month ago phoned today as promised, but seems very unenthusiastic about introducing a carer to Dhiren. I accept he`s a challenge, I told her he isn`t too happy about having people in and asked her advice. She was not forthcoming at all.
I told her I was unhappy with the questions she asked and the comments she made when she visited. I don`t think she understood what I was talking about.
All she said was when she has someone available she will give me a ring.
I think I will explore direct payments. Does anyone know if I can use direct payments for housework etc. and then I will look after Dhiren myself.
Dear Sylvia
I'm sorry you've had such a negative response from Crossroads.
As to direct payments for housework, this site would appear to suggest that you as a carer (as opposed to Dhiren) are entitled
http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517
I'm sorry you've had such a negative response from Crossroads.
As to direct payments for housework, this site would appear to suggest that you as a carer (as opposed to Dhiren) are entitled
http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517
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