Hello,
My Mom has Lewy Body Dementia. I cared for her for over three years but earlier this year she went into a home.
I have LPA for both financial and medical. Below is the journey I have been on recently where the care home and the local dementia services have not consulted me on decision about my mom's care. Should this happen? What are my rights and the LPA? Interested in any views.
Summary -
1. Never informed about decisions or my mom's behaviour
2. Have to always chase for updates from both home and dementia services
3. Dementia services twice arranged to meet me to discuss my mom's care and came at a different time.
4. Dementia services committed to keep me updated never have, I always have to chase for updates
5. My mom has had no medication for nearly 2 months and is suffering
My mom has prescribed donepezil 10mg daily which really helps and has been taking them for nearly 3 years. If she misses medication she significantly declines.
In July this year I noticed my mother had declined and put it down to her dementia advancing. One day I visited the care home midweek at midday which is not my usual routine to find my mom was still in bed. The manager asked to meet me to inform me for some time my mom had been refusing medication and sporadically taking medication.
They had contacted the local dementia services to come out and told me the time and date they were coming. I said I would be there for the meeting. On the day I arrived (100m journey) to be told they had been and gone and had prescribed further medication to make her less aggressive so she would not refuse the donepezil.
The new medication had a drastically negative impact on my mom. It made her physically and mentally incapacitated. The care homes feedback was that she is much better (presumably because she is easier for them to manage).
I arranged a meeting with the dementia specialist and he decided to take her off medication altogether and requested a GP to see her as she may have had a stroke which could have been caused by the care home intermittently administering donepezil.
We arranged a date together to review next steps. Again I make 100m journey to attend the agreed meeting to arrive and say he had been and gone and had requested blood tests. Three weeks later still not blood tests performed, my mom still on no medication.
The Dementia specialists then called me to say he is going to visit my mom the next day as the blood tests results should be in. I knew there had been not blood test and I told him. He then said he would arrange the tests himself.
The next day the care home called to say my mom has been taken to hospital with a suspected stroke. I arrived she had CT scan, chest x-ray blood test no stroke. We spent 6 hours in a corridor in A&E, could get no transport to take my mom back to the home so I transported her home.
Below is an email trail between the owner of the home and myself. Names removed. She refers to my mom by her initials in the original emails
Hi Martin,
Thanks for getting back to me.
I am aware that BC sometime did not take her medication at prescribed times -always-, however the staff did persevere and the time was changed to allow more flexibility to take the medication - this was by GP recommendation.
As BC behavior changed [ kicking, hitting]it was then the mental health team were asked to get involved, as they are specialists within their field.
We are obliged to take direction from medical services and one of their recommendations was to take away all medication as BC was no longer experiencing any benefit from the drugs.
Apologies if you feel you were not given information.
The mental health team have been guiding xxxx care home n the best way to support BC, and it is their opinion that the medication is no longer effective, blood tests were requested, that I agree took time to happen.
BC has a particular form of dementia called Lewy Body, the nature of this disease means BC will experience sharp declines in her mental and physical well being, sometimes there maybe some mild improvement,however this can be short lived
We need to meet to discuss how best, to support BC from now, and how to ensure she has the support required to enjoy her life , moving forward.
I am happy to meet Tuesday , I know Sue will also make herself available.
What time are you thinking for us to meet Tuesday ??
Regards
From: Martin
Sent:
To:
Cc:
Subject: RE: Meeting
Hello,
I am not available on the 24th but can be there on 25th and I will also be there on Sunday 23rd.
To date XXX has not kept one appointment with me that he has agreed tom, has not met commitments he made to keep me informed. I will ask him to change the date he is coming in to the 25th.
Likewise at the beginning of this episode I was not informed the my mom had refused and not taken her original donepezil hydrochloride medication. The decision to give her other medication I was not consulted on. Is that usual? Are there any other decisions I am not aware of?
Her decline is so bad as she is on no medication for her dementia surely.
The amount of time it has taken for blood tests and decisions by Dementia Specialists organisation is disgraceful.
Yesterday was a very stressful day for my mother no wonder she is sleepy. We were sat in an A&E corridor, mom in wheelchair with no cushion for over 3 hours, in the end I had to make the decision to transport her myself to xxxx home. I tried to call xxxx home 7 times to say Mom was being transported back that evening nobody answered. When I arrived at the hospital she was very aware, talkative, happy and cooperating with the staff.
Kind Regards,
Martin
>
Subject: Meeting
Hi Martin
just a quick update for you.
Today BC required x2 staff to get her up/washed and dressed this morning
She has required staff to feed her all food and drinks
she has been sleepy this afternoon, but has also been awake observing her surroundings
Manage and I would like to meet with you discuss BC care and how best to support her following her recent decline in health.
Are you free Monday 24th ? as Adam is coming to see BC and I think it would be beneficial. Sue and I will also be inattendance
Kind Regards
My Mom has Lewy Body Dementia. I cared for her for over three years but earlier this year she went into a home.
I have LPA for both financial and medical. Below is the journey I have been on recently where the care home and the local dementia services have not consulted me on decision about my mom's care. Should this happen? What are my rights and the LPA? Interested in any views.
Summary -
1. Never informed about decisions or my mom's behaviour
2. Have to always chase for updates from both home and dementia services
3. Dementia services twice arranged to meet me to discuss my mom's care and came at a different time.
4. Dementia services committed to keep me updated never have, I always have to chase for updates
5. My mom has had no medication for nearly 2 months and is suffering
My mom has prescribed donepezil 10mg daily which really helps and has been taking them for nearly 3 years. If she misses medication she significantly declines.
In July this year I noticed my mother had declined and put it down to her dementia advancing. One day I visited the care home midweek at midday which is not my usual routine to find my mom was still in bed. The manager asked to meet me to inform me for some time my mom had been refusing medication and sporadically taking medication.
They had contacted the local dementia services to come out and told me the time and date they were coming. I said I would be there for the meeting. On the day I arrived (100m journey) to be told they had been and gone and had prescribed further medication to make her less aggressive so she would not refuse the donepezil.
The new medication had a drastically negative impact on my mom. It made her physically and mentally incapacitated. The care homes feedback was that she is much better (presumably because she is easier for them to manage).
I arranged a meeting with the dementia specialist and he decided to take her off medication altogether and requested a GP to see her as she may have had a stroke which could have been caused by the care home intermittently administering donepezil.
We arranged a date together to review next steps. Again I make 100m journey to attend the agreed meeting to arrive and say he had been and gone and had requested blood tests. Three weeks later still not blood tests performed, my mom still on no medication.
The Dementia specialists then called me to say he is going to visit my mom the next day as the blood tests results should be in. I knew there had been not blood test and I told him. He then said he would arrange the tests himself.
The next day the care home called to say my mom has been taken to hospital with a suspected stroke. I arrived she had CT scan, chest x-ray blood test no stroke. We spent 6 hours in a corridor in A&E, could get no transport to take my mom back to the home so I transported her home.
Below is an email trail between the owner of the home and myself. Names removed. She refers to my mom by her initials in the original emails
Hi Martin,
Thanks for getting back to me.
I am aware that BC sometime did not take her medication at prescribed times -always-, however the staff did persevere and the time was changed to allow more flexibility to take the medication - this was by GP recommendation.
As BC behavior changed [ kicking, hitting]it was then the mental health team were asked to get involved, as they are specialists within their field.
We are obliged to take direction from medical services and one of their recommendations was to take away all medication as BC was no longer experiencing any benefit from the drugs.
Apologies if you feel you were not given information.
The mental health team have been guiding xxxx care home n the best way to support BC, and it is their opinion that the medication is no longer effective, blood tests were requested, that I agree took time to happen.
BC has a particular form of dementia called Lewy Body, the nature of this disease means BC will experience sharp declines in her mental and physical well being, sometimes there maybe some mild improvement,however this can be short lived
We need to meet to discuss how best, to support BC from now, and how to ensure she has the support required to enjoy her life , moving forward.
I am happy to meet Tuesday , I know Sue will also make herself available.
What time are you thinking for us to meet Tuesday ??
Regards
From: Martin
Sent:
To:
Cc:
Subject: RE: Meeting
Hello,
I am not available on the 24th but can be there on 25th and I will also be there on Sunday 23rd.
To date XXX has not kept one appointment with me that he has agreed tom, has not met commitments he made to keep me informed. I will ask him to change the date he is coming in to the 25th.
Likewise at the beginning of this episode I was not informed the my mom had refused and not taken her original donepezil hydrochloride medication. The decision to give her other medication I was not consulted on. Is that usual? Are there any other decisions I am not aware of?
Her decline is so bad as she is on no medication for her dementia surely.
The amount of time it has taken for blood tests and decisions by Dementia Specialists organisation is disgraceful.
Yesterday was a very stressful day for my mother no wonder she is sleepy. We were sat in an A&E corridor, mom in wheelchair with no cushion for over 3 hours, in the end I had to make the decision to transport her myself to xxxx home. I tried to call xxxx home 7 times to say Mom was being transported back that evening nobody answered. When I arrived at the hospital she was very aware, talkative, happy and cooperating with the staff.
Kind Regards,
Martin
>
Subject: Meeting
Hi Martin
just a quick update for you.
Today BC required x2 staff to get her up/washed and dressed this morning
She has required staff to feed her all food and drinks
she has been sleepy this afternoon, but has also been awake observing her surroundings
Manage and I would like to meet with you discuss BC care and how best to support her following her recent decline in health.
Are you free Monday 24th ? as Adam is coming to see BC and I think it would be beneficial. Sue and I will also be inattendance
Kind Regards
