My mum passed away in January after suffering with dementia for several years. I’m sharing this experience in the hope it may inform the wider debate about how society manages this horrific disease.
As my mum’s closest living relative I found myself with a responsibility I was completely unprepared for. Although I’d heard of dementia I just thought it was worsening memory loss. I had no idea of the full range of symptoms involved. I naturally wanted to help however I could, but felt totally unprepared for the expectations placed upon me by the system.
I don’t have the greatest organizational and communicative skills but after going back and forth between social services, the NHS, and Age UK, eventually mum was provided with twice-daily carer visits. Unfortunately due to her dementia she didn’t co-operate with the carers, not allowing them to administer personal care or prepare food. Despite the continued pattern of sending carers away, and even once after a carer found the controls of her gas cooker all turned on (luckily she had a safety cooker that needs the dials to be turned AND pushed), no additional help was provided.
Her psychiatrist said that with the right medication she would be able to remain in her own home. He prescribed a course of medication, but no arrangements were made to administer it, despite it being clear she would not be able to remember to take it herself, and the potential risk of overdose if she had taken it but forgot and re-took it. By this time she was accusing me of poisoning the food shopping I was taking in, so there was no way I could have given the medication. After a review the psychiatrist found that she had not taken the medication, and so prescribed a different medication! Again just leaving it with her.
At one point I was given the telephone number of a Crisis Line. However, after mum was found wandering outside her house by a neighbour, on calling the crisis line I was merely told the psychiatric department was closed and that I should call there during office hours.
Despite using a walking stick for several years as mum’s dementia progressed she forgot she needed the stick and as a result had several falls to which ambulances were called. On at least 3 occasions ambulances attended, but despite her obvious dementia, and continued risk of falling did not admit her to hospital and left her at home without anything being done to provide the support she clearly needed.
I visited one afternoon and found her semi-conscious lying across the bed apparently having been there from the previous evening. This time thankfully the ambulance staff took her to hospital. However, the consultant on duty was extremely rude, implying it was not her job to deal with mum’s case and suggesting she would be taking a bed needed for other cases. Eventually after several weeks in hospital she was referred to a nursing home specializing in dementia, where she remained for her last year and a half.
Upon admittance to the home I was informed, with a greater haste than anything regarding her medical treatment, that I needed to sort out access to her money in case she needed to pay for her care. As I knew nothing about this process I sought advice from Age UK, where mum had been a client for several years. I was told that she needed to apply for court of protection, and that if I couldn’t process the application I should seek help from a private solicitor, recommended (upon my request) by Age UK.
The solicitor ended up charging £1800 in fees, more than double the initial estimate, excluding court costs and the £200 or so for the assessment visit from mum’s (NHS) psychiatrist. On reviewing the paperwork it seemed the solicitor’s role amounted to the completion of a few forms that I could probably have done myself given appropriate guidance.
Mum had good and bad days in the home, but in my experience was treated kindly by staff who appeared to do a very difficult job to the best of their ability.
One Thursday morning I received a telephone call from a doctor at the home who said that mum had pneumonia and that although she could be admitted to hospital he advised she should remain in the home and that he would prescribe antibiotics. Just before ending the call he remarked that he did not expect her to survive. Obviously there is no easy way to impart such information, but I was shocked by the bluntness of delivery as much as the content.
Over the next few days mum was unable to swallow fluids or medication. I had to place faith in the treatment she was given, but when I asked whether this could be given intravenously, but was just informed that the medication was in syrup form.
The whole experience has left me feeling frustrated, disillusioned and full of questions about what could have been done better, by me or the professionals. Maybe there is little that can be done for dementia patients, but in summary my experience suggests two glaring lessons.
A) there needs to be much more guidance for relatives dealing with dementia sufferers, it should not simply be assumed that everyone has the knowledge and capacity to be able to immediately cope when a loved one develops this condition, there needs to be a single point of contact to provide necessary guidance and practical support.
B) there needs to be co-ordination between the different agencies that exist to support dementia, in mum’s case that is social services, the private care agency, the NHS, and Age UK.
As my mum’s closest living relative I found myself with a responsibility I was completely unprepared for. Although I’d heard of dementia I just thought it was worsening memory loss. I had no idea of the full range of symptoms involved. I naturally wanted to help however I could, but felt totally unprepared for the expectations placed upon me by the system.
I don’t have the greatest organizational and communicative skills but after going back and forth between social services, the NHS, and Age UK, eventually mum was provided with twice-daily carer visits. Unfortunately due to her dementia she didn’t co-operate with the carers, not allowing them to administer personal care or prepare food. Despite the continued pattern of sending carers away, and even once after a carer found the controls of her gas cooker all turned on (luckily she had a safety cooker that needs the dials to be turned AND pushed), no additional help was provided.
Her psychiatrist said that with the right medication she would be able to remain in her own home. He prescribed a course of medication, but no arrangements were made to administer it, despite it being clear she would not be able to remember to take it herself, and the potential risk of overdose if she had taken it but forgot and re-took it. By this time she was accusing me of poisoning the food shopping I was taking in, so there was no way I could have given the medication. After a review the psychiatrist found that she had not taken the medication, and so prescribed a different medication! Again just leaving it with her.
At one point I was given the telephone number of a Crisis Line. However, after mum was found wandering outside her house by a neighbour, on calling the crisis line I was merely told the psychiatric department was closed and that I should call there during office hours.
Despite using a walking stick for several years as mum’s dementia progressed she forgot she needed the stick and as a result had several falls to which ambulances were called. On at least 3 occasions ambulances attended, but despite her obvious dementia, and continued risk of falling did not admit her to hospital and left her at home without anything being done to provide the support she clearly needed.
I visited one afternoon and found her semi-conscious lying across the bed apparently having been there from the previous evening. This time thankfully the ambulance staff took her to hospital. However, the consultant on duty was extremely rude, implying it was not her job to deal with mum’s case and suggesting she would be taking a bed needed for other cases. Eventually after several weeks in hospital she was referred to a nursing home specializing in dementia, where she remained for her last year and a half.
Upon admittance to the home I was informed, with a greater haste than anything regarding her medical treatment, that I needed to sort out access to her money in case she needed to pay for her care. As I knew nothing about this process I sought advice from Age UK, where mum had been a client for several years. I was told that she needed to apply for court of protection, and that if I couldn’t process the application I should seek help from a private solicitor, recommended (upon my request) by Age UK.
The solicitor ended up charging £1800 in fees, more than double the initial estimate, excluding court costs and the £200 or so for the assessment visit from mum’s (NHS) psychiatrist. On reviewing the paperwork it seemed the solicitor’s role amounted to the completion of a few forms that I could probably have done myself given appropriate guidance.
Mum had good and bad days in the home, but in my experience was treated kindly by staff who appeared to do a very difficult job to the best of their ability.
One Thursday morning I received a telephone call from a doctor at the home who said that mum had pneumonia and that although she could be admitted to hospital he advised she should remain in the home and that he would prescribe antibiotics. Just before ending the call he remarked that he did not expect her to survive. Obviously there is no easy way to impart such information, but I was shocked by the bluntness of delivery as much as the content.
Over the next few days mum was unable to swallow fluids or medication. I had to place faith in the treatment she was given, but when I asked whether this could be given intravenously, but was just informed that the medication was in syrup form.
The whole experience has left me feeling frustrated, disillusioned and full of questions about what could have been done better, by me or the professionals. Maybe there is little that can be done for dementia patients, but in summary my experience suggests two glaring lessons.
A) there needs to be much more guidance for relatives dealing with dementia sufferers, it should not simply be assumed that everyone has the knowledge and capacity to be able to immediately cope when a loved one develops this condition, there needs to be a single point of contact to provide necessary guidance and practical support.
B) there needs to be co-ordination between the different agencies that exist to support dementia, in mum’s case that is social services, the private care agency, the NHS, and Age UK.
