Hi
Where to start? I live in Australia but am struggling to find an Australian forum as comprehensive as this one.
My mother has received varying diagnoses and opinions in relation to her cognitive state. During the course of a five week hospital admission from late November 2011 to early January 2012 mum was "diagnosed" as having Alzheimer's Disease by a geriatrician and consultant physician who is a visiting medical officer (let's call him Dr H) at the hospital in which she was staying. He is also the Director of Geriatric Medicine at another private hospital. Mum's original admission to hospital resulted from ongoing facial pain (diagnosed some months earlier as Trigeminal Neurlgia), confusion and loss of her ability to cope.
During mum's stay my brother and I made several unsuccessful attempts to contact her neurologist (we'll call him Dr S) to discuss her condition. Our requests for discussion were ignored. He simply did not respond. On one occasion, and only by chance, I was visiting mum when Dr S popped in. He seemed surprised when mum told him how disappointed we were that he had not returned our calls.
My brother and I were made aware of the diagnosis during a family meeting, initially with Dr H, an occupational therapist, discharge nurse and then, later, mum. During the family conference arrangements for mum's return to her home were discussed and subsequently put in place. One of these arrangements was that a home nursing service would visit her daily, for a week, to see how she was coping and checking on how she was going with her medication. Mum agreed to this arrangement. (As it turned out, mum rejected the home nurses visit, saying that she would have to visit at a time suitable to mum and that she regarded the visit as an invasion of privacy. She also said the nurse was not suitably qualified to advise on and monitor mum's medication.)
Mum seemed to accept the diagnosis. In fact she was more concerned about being told that she could no longer drive.
The months that followed were difficult. During this time she rejected the AD diagnosis and placed all her trust in Dr S. Finally, at mum's insistence, Dr S did make contact with my brother and said mum was certainly experiencing cognitive dysfunction and believed she may have Frontotemporal Dementia. He agreed that we discuss this possibility with mum. My brother went to mum's house and talked to her about his conversation with Dr S and the possibility of FTD. Again, she seemed to accept what she was being told. This was back in March.
In early April, I attended with mum at a follow up appointment with Dr H. Mum travelled to the city via community transport as she lives 80 kilometres away. During the appointment mum said that her GP had given her permission to drive (true) despite being instructed by Dr H not too. Her GP was also aware of this. Dr H was concerned about this and wanted mum, at the very least, to undergo a driving assessment. She became agitated and angry. The geriatrician spent over an hour with us. The appointment ended when the community transport driver came to collect her. Later, mum went on to reject everything discussed at the appointment and the recommendations made. She accused the Dr H of deliberately making the appointment go over time so that he could charge her more. She refused to see him again.
Two days later my mother had an appointment with Dr S. My brother and sister-in-law agreed to attend with her though, for some reason, she arranged for community transport to take her to the city despite the fact that my brother said he would be able to pick her up and take her home. My brother had prepared a list of questions for Dr S and recorded the answers. One of the questions my brother asked was whether he still believed mum had FTD. At this point Dr S hesitated to say for certain and went on to talk about the detailed complexities of dementia. He said the best way to ascertain level of impairment was with a full neuropsychological assessment. Mum agreed to this and he would arrange for an assessment to be undertaken after Easter. Seven months later this has still not been done. When I quizzed mum about it she said she had undergone the assessment, that Dr S was happy with the results and she was allowed to drive. I asked her where she had done the assessment and she said it was able to be done locally. I knew she was not telling the truth. She lives in an area heavily populated by elderly retirees. There are no specialists, few doctors and no hospital. However, in the absence of any evidence to the contrary, I was forced to accept what she told me. On this basis, I wrote to Dr S, in an attempt to open up the lines of communication and extract the truth, and thanked him for arranging the assessment. He didn't respond.
In September mum underwent microvascular decompression for her trigeminal neuralgia. The surgeon said the operation went well but there was very little to decompress. Mum's cognitive impairment was also discussed and he would not rule out AD as the cause. Prior to the surgery mum informed my brother and his wife that she had not undergone the neuropsychological assessment and stated that Dr S had no intention of organising an assessment, that he said he would do so to stop my brother and I worrying. She said "he gave me a little kick under the table and a wink to let me know he wasn't really going to make me do it". Mum also confirmed what she said to my brother and his wife to my husband and I a week later.
What we are going through only touches the surface of what is going on. There are issues with her legal documents (specifically, her Enduring Power of Attorney), the failure of the MVD surgery, her continuing pain and confusion, her inability to cope and properly care for herself and the ongoing lack of communication from her neurologist. In Australia, as I'm sure it is worldwide, the Doctors' Code of Conduct states that good medical practice involves being considerate to relatives, carers, partners and others close the patient, and respectful of their role in the care of the patient and, with appropriate consent, being responsive in providing information. She takes a considerable amount of prescription medication including painkillers and sedatives. She continues to drive but restricts herself to driving locally despite the fact she keeps telling us that she's "tossing down the painkillers and sedatives". This raises the question as to what difference is there between driving whilst heavily medicated and driving under the influence of alcohol. If I was pulled over for a random breath test after consuming a few drinks and driving home it wouldn't be acceptable because I was driving locally.
In a last ditch effort to get some answers my brother has again written to Dr S. We're not hopeful of a response.
Where to start? I live in Australia but am struggling to find an Australian forum as comprehensive as this one.
My mother has received varying diagnoses and opinions in relation to her cognitive state. During the course of a five week hospital admission from late November 2011 to early January 2012 mum was "diagnosed" as having Alzheimer's Disease by a geriatrician and consultant physician who is a visiting medical officer (let's call him Dr H) at the hospital in which she was staying. He is also the Director of Geriatric Medicine at another private hospital. Mum's original admission to hospital resulted from ongoing facial pain (diagnosed some months earlier as Trigeminal Neurlgia), confusion and loss of her ability to cope.
During mum's stay my brother and I made several unsuccessful attempts to contact her neurologist (we'll call him Dr S) to discuss her condition. Our requests for discussion were ignored. He simply did not respond. On one occasion, and only by chance, I was visiting mum when Dr S popped in. He seemed surprised when mum told him how disappointed we were that he had not returned our calls.
My brother and I were made aware of the diagnosis during a family meeting, initially with Dr H, an occupational therapist, discharge nurse and then, later, mum. During the family conference arrangements for mum's return to her home were discussed and subsequently put in place. One of these arrangements was that a home nursing service would visit her daily, for a week, to see how she was coping and checking on how she was going with her medication. Mum agreed to this arrangement. (As it turned out, mum rejected the home nurses visit, saying that she would have to visit at a time suitable to mum and that she regarded the visit as an invasion of privacy. She also said the nurse was not suitably qualified to advise on and monitor mum's medication.)
Mum seemed to accept the diagnosis. In fact she was more concerned about being told that she could no longer drive.
The months that followed were difficult. During this time she rejected the AD diagnosis and placed all her trust in Dr S. Finally, at mum's insistence, Dr S did make contact with my brother and said mum was certainly experiencing cognitive dysfunction and believed she may have Frontotemporal Dementia. He agreed that we discuss this possibility with mum. My brother went to mum's house and talked to her about his conversation with Dr S and the possibility of FTD. Again, she seemed to accept what she was being told. This was back in March.
In early April, I attended with mum at a follow up appointment with Dr H. Mum travelled to the city via community transport as she lives 80 kilometres away. During the appointment mum said that her GP had given her permission to drive (true) despite being instructed by Dr H not too. Her GP was also aware of this. Dr H was concerned about this and wanted mum, at the very least, to undergo a driving assessment. She became agitated and angry. The geriatrician spent over an hour with us. The appointment ended when the community transport driver came to collect her. Later, mum went on to reject everything discussed at the appointment and the recommendations made. She accused the Dr H of deliberately making the appointment go over time so that he could charge her more. She refused to see him again.
Two days later my mother had an appointment with Dr S. My brother and sister-in-law agreed to attend with her though, for some reason, she arranged for community transport to take her to the city despite the fact that my brother said he would be able to pick her up and take her home. My brother had prepared a list of questions for Dr S and recorded the answers. One of the questions my brother asked was whether he still believed mum had FTD. At this point Dr S hesitated to say for certain and went on to talk about the detailed complexities of dementia. He said the best way to ascertain level of impairment was with a full neuropsychological assessment. Mum agreed to this and he would arrange for an assessment to be undertaken after Easter. Seven months later this has still not been done. When I quizzed mum about it she said she had undergone the assessment, that Dr S was happy with the results and she was allowed to drive. I asked her where she had done the assessment and she said it was able to be done locally. I knew she was not telling the truth. She lives in an area heavily populated by elderly retirees. There are no specialists, few doctors and no hospital. However, in the absence of any evidence to the contrary, I was forced to accept what she told me. On this basis, I wrote to Dr S, in an attempt to open up the lines of communication and extract the truth, and thanked him for arranging the assessment. He didn't respond.
In September mum underwent microvascular decompression for her trigeminal neuralgia. The surgeon said the operation went well but there was very little to decompress. Mum's cognitive impairment was also discussed and he would not rule out AD as the cause. Prior to the surgery mum informed my brother and his wife that she had not undergone the neuropsychological assessment and stated that Dr S had no intention of organising an assessment, that he said he would do so to stop my brother and I worrying. She said "he gave me a little kick under the table and a wink to let me know he wasn't really going to make me do it". Mum also confirmed what she said to my brother and his wife to my husband and I a week later.
What we are going through only touches the surface of what is going on. There are issues with her legal documents (specifically, her Enduring Power of Attorney), the failure of the MVD surgery, her continuing pain and confusion, her inability to cope and properly care for herself and the ongoing lack of communication from her neurologist. In Australia, as I'm sure it is worldwide, the Doctors' Code of Conduct states that good medical practice involves being considerate to relatives, carers, partners and others close the patient, and respectful of their role in the care of the patient and, with appropriate consent, being responsive in providing information. She takes a considerable amount of prescription medication including painkillers and sedatives. She continues to drive but restricts herself to driving locally despite the fact she keeps telling us that she's "tossing down the painkillers and sedatives". This raises the question as to what difference is there between driving whilst heavily medicated and driving under the influence of alcohol. If I was pulled over for a random breath test after consuming a few drinks and driving home it wouldn't be acceptable because I was driving locally.
In a last ditch effort to get some answers my brother has again written to Dr S. We're not hopeful of a response.
