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Personal Experience

Johnny99

Registered User
Mar 3, 2016
3
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.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,881
Merseyside
I'm so sorry to read about your experiences with your mum. You sound like an amazing son who did her proud.
 

Marcelle123

Registered User
Nov 9, 2015
4,573
Yorkshire
I am sorry for your loss and your sad experience. Thank you so much, though, for sharing your experience. This is a masterly post which will be of great use to anyone finding themselves suddenly dealing with dementia in a family member. I agree wholeheartedly with your conclusions.
 

Gwendy1

Registered User
Feb 9, 2016
414
Glasgow
As others have said, I'm so sorry for your experiences, and for your late mum's experiences. It does seem that 'dementia' is so complicated to deal with- the legal and financial issues alone are a minefield, which seem to appear when everyone is already under enormous pressure dealing with a crisis, trying to care, trying to cope. I've been there with my dad, I'm still struggling to cope, and he has been in a care home for nearly 2 years. I totally agree with you. The system is flawed. From reading your post, please don't ever doubt you did all you could for your mum, it's very clear how much you loved her. So sorry for your loss. X


Sent from my iPhone using Talking Point
 

Philbo

Registered User
Feb 28, 2017
774
Kent
I would like to add my thanks for such a great post.

I remember that when I first managed to get my wife to go to the doctors about her failing memory (she was only 62 at the time), the GP was a bit dismissive, putting her symptoms down to stress, anxiety and "getting older". As she did rather poorly on the short memory test, he referred her to the Memory Clinic.

Around the time of her diagnosis with FTD, a year later, the dementia awareness campaign started on the TV, to the affect of "early diagnosis will help you get the support you need".

Yeah, right? - Two years after being diagnosed, she was discharged back to our GP and I naively thought that the surgery would be in touch to formulate some sort of care plan. Good job I didn't hold my breath! Virtually all the "support" I've managed to get has been due to me finding out about it myself.

No-one told me about attendance allowance or council tax reduction until I stumbled across a great local organisation called Crossroads Care. With their help, I applied for AA (which my wife should have been entitled to receive from her 65th birthday, but as they do not back-date it, we lost out on 4 months’ worth. Same with the CT reduction, as it only applies from the date you receive AA!

When my wife first started having episodes of incontinence, I was desperate for some advice and reassurance and spent a frantic Friday afternoon calling every number I could find, with everyone (including Age UK, Admiral Nurses and GP surgery) pointing me every which way. The only sympathetic ear was the National Dementia Helpline.

So although we now have some avenues to get some advice, I still can't get over the feeling of being just left to my own devices to battle on. Being self funders, SS certainly don't want to get involved.
 

istherelight?

Registered User
Feb 15, 2017
117
So sorry for your loss, Johnny99, and I so agree with your post.

My Mum is now in a care home but it was a chaotic process and if it had not been for TP and a wonderful care home manager I think we would still be in limbo. I didn't have any idea of how to go about things and the hospital didn't seem to either. In the end I just winged it.

If Mum had not been self-funding then I think SS would have been far more involved but, as Philbo says, as self-funders, you're on your own.


Sent from my iPad using Talking Point
 

Rosnpton

Registered User
Mar 19, 2017
394
Northants
Thank you for such an honest account of the problems and lack of help . We now have mum in a care home-since April last year. We are self funding but running out of funds so now trying to jump the hurdles of applying for council help.
We were having carers at home,2 half hour visits a day,but as her dementia accelerated, she was no longer able to sign paperwork or chqs to pay for her care. My parents always refused poa(indeed dad now starting to show signs of early dementia and still won't consider one). My brother and I were told we needed to apply to the court of protection for access to mums money. We submitted the paperwork Dec2015,and finally were granted deputy ship and access to her accounts March 2016. At this point,we had run up debts of several thousand pounds with the local council for providing the care at home and respite care, and we're getting threatening debt collections letters not good when I work in finance! We thought things would all slot into place now we had the official paperwork,but it took many visits to her various banks,and letters to insurance agents etc before we had a deputy account up and running,and bills paid. I have just submitted our audit to the courts,and it has taken many many hours to complete.the best thing-the council don't accept copies of the account audit for the courts,it has to be on their own forms,and every day we seem to be getting emails asking for information-some already submitted but for a different reason! ATM,the way I feel, if the council won't pay her care bills-and we have spent £50 nearly of what would have been the grandkids inheritance but my parents never out monies in trusts etc-they can have her and her belongings delivered to the local council offices!

Sorry for final rant,but I'm reaching the end of my tether.

,
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.
 

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