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A lifelong friend and me

DesperateofDevon

Registered User
Jul 7, 2019
2,675
I'm not sure it is of any comfort to all of you in the UK, but the Care system in Canada is also broken. In Ontario, the options are a private pay Retirement home which is about $4000 a month if you are mostly independant and just want to have meals and medication assistance. If you can afford it there are some retirement homes which offer Memory Care wings which can be between $6000 and $8000 a month. The option for most people is Long Term Care Homes which are partially government subsidized for everyone, but everyone has to pay something. The cost of a shared room, usually 2 residents, is $1900 a month, a private room is $2700. If you have a very low income you can apply for a higher government subsidy but only if you are in a shared room. There are thousands of people on the waiting lists, some homes have 4 and 5 year waits, which continue to get longer because the government entity Local Integrated Health Network manages the lists and determines who needs the placement the most. What has happened is that the only people getting into the homes are in a 'crisis' situation because their physical or mental needs are so great that they can longer live at home or in a retirement home, or with family so they jump to the top of the queue. This is placing such a strain on the system that there is serious burn out among health care workers, and the field is no longer attracting people who want to work like dogs for not much more than minimum wage. Each Personal Service Worker is responsible for an average of 9 residents, on my Mum's floor, all but 1 resident on each team are in wheelchairs, with the majority needing at least some assistance for feeding. They are given 2 showers per week, most residents needing a lift and shower chair to accomplish this.
The result is that there is no time for the residents beyond the basic feeding, cleaning and toileting care. There are residents who sit staring at the wall from 7 am until 9 pm , moving only when it is time for meals, toileting or a shower. Once you are in a home your only contact is the resident manager in the home, you are no longer a 'customer' of the LINH, so your ability to effect change is limited to how much they decide to help you, and what resources they have available to them. I have had to fight for every safety aid, proper dressing, attention to hygiene, and care in transferring without causing massive bruises and skin tears on a weekly basis for the almost 3 years my Mum has lived there, and as a PWD she has no ability to even speak for herself so I will continue to do so.
It is a sad situation with no remedy in sight, it is only going to get worse with the aging population and the increased life spans, and rising numbers of cases of dementia. The PSWs , mostly in their 30's are saying they are already afraid of how bad it will be by the time they need long term care.
So we just soldier on and do our best to provide some comfort to my Mum by visiting everyday to try to normalize this terrible situation. The best thing I have found to help me deal with my struggles is this community of fellow carers. There is no better place than DTP to find people who understand the challenges we face, regardless of where we live,and the agencies we have to deal with and I thank you all for your posts.
Wow... I feel so sorry for you folks, it’s of no comfort that the system is broken but maybe our voices will be heard to improve how dementia is approached & treated.
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
I'm not sure it is of any comfort to all of you in the UK, but the Care system in Canada is also broken. In Ontario, the options are a private pay Retirement home which is about $4000 a month if you are mostly independant and just want to have meals and medication assistance. If you can afford it there are some retirement homes which offer Memory Care wings which can be between $6000 and $8000 a month. The option for most people is Long Term Care Homes which are partially government subsidized for everyone, but everyone has to pay something. The cost of a shared room, usually 2 residents, is $1900 a month, a private room is $2700. If you have a very low income you can apply for a higher government subsidy but only if you are in a shared room. There are thousands of people on the waiting lists, some homes have 4 and 5 year waits, which continue to get longer because the government entity Local Integrated Health Network manages the lists and determines who needs the placement the most. What has happened is that the only people getting into the homes are in a 'crisis' situation because their physical or mental needs are so great that they can longer live at home or in a retirement home, or with family so they jump to the top of the queue. This is placing such a strain on the system that there is serious burn out among health care workers, and the field is no longer attracting people who want to work like dogs for not much more than minimum wage. Each Personal Service Worker is responsible for an average of 9 residents, on my Mum's floor, all but 1 resident on each team are in wheelchairs, with the majority needing at least some assistance for feeding. They are given 2 showers per week, most residents needing a lift and shower chair to accomplish this.
The result is that there is no time for the residents beyond the basic feeding, cleaning and toileting care. There are residents who sit staring at the wall from 7 am until 9 pm , moving only when it is time for meals, toileting or a shower. Once you are in a home your only contact is the resident manager in the home, you are no longer a 'customer' of the LINH, so your ability to effect change is limited to how much they decide to help you, and what resources they have available to them. I have had to fight for every safety aid, proper dressing, attention to hygiene, and care in transferring without causing massive bruises and skin tears on a weekly basis for the almost 3 years my Mum has lived there, and as a PWD she has no ability to even speak for herself so I will continue to do so.
It is a sad situation with no remedy in sight, it is only going to get worse with the aging population and the increased life spans, and rising numbers of cases of dementia. The PSWs , mostly in their 30's are saying they are already afraid of how bad it will be by the time they need long term care.
So we just soldier on and do our best to provide some comfort to my Mum by visiting everyday to try to normalize this terrible situation. The best thing I have found to help me deal with my struggles is this community of fellow carers. There is no better place than DTP to find people who understand the challenges we face, regardless of where we live,and the agencies we have to deal with and I thank you all for your posts.
Thanks for sharing this @millalm. I have already had to fight for mum with some medical issues that weren't being attended to appropriately and it took repeated prompts until I spoke to the district nurses (community nurses) myself. But, your example is significant at revealing how bad things are in other countries and the direct care worse.

Just to highlight on a global level and I'm qouting the World Health Organisation (WHO, 2019) say this:

'Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year'.
This implies one new case of dementia every 3.2 seconds. Forecasts predict the following:

'The total number of people with dementia is projected to reach 82 million in 2030 and 152 million by 2050.'
The total global cost of dementia is already in excess of 1 trillion US dollars (Alzheimer's Disease International) this is not just formal care but also informal care (the cost incurred to family and friends who take on caring roles) and this will continue to rise. The mechanisms we have in place now are already unsustainable. But this is global (macro level) when we talk at this level it becomes far removed from the reality of the micro level -that is us the very people who are affected by dementia and our day to day battles with dementia care.

Few countries are really addressing how to approach this increasing demand and how to address adequate care provision, the UK is guilty of this as well. Privatisation of the dementia care system is doomed to fail and lead to poor care as demand outstrips supply and profiteering shifts up the cost to those afflicted and their families, while care homes will struggle to provide good care and the situation will be as you have described if not worse for many. The system we have today is not going to succeed and is already failing. Profiteering from dementia has to stop and we have to find a better alternative to private care homes. People will have to make a contribtuion, but care provision can be done more fairly and with better results than we have currently.

One last point worth mentioning, qouted directly from the World Health Organisation (2019)

'People with dementia are frequently denied the basic rights and freedoms available to others. In many countries, physical and chemical restraints are used extensively in care homes for older people and in acute-care settings, even when regulations are in place to uphold the rights of people to freedom and choice.

An appropriate and supportive legislative environment based on internationally-accepted human rights standards is required to ensure the highest quality of care for to people with dementia and their carers.'
 

Splashing About

Registered User
Oct 20, 2019
433
@Palerider that makes frightening reading but is not a surprise. There is a huge push back in my experience from adult social care to try and keep care contained within family units rather than break the system. this may have been partially successful as a policy from social cares pov but not from carers.

Those of us who have been through the caring experience once may not be as resilient next time around. I look at my own situation...two more elderly parents and a husband have to avoid dementia otherwise yours truly will be doing it all again. What are the odds?

Something has to give. This time around it’s carers.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,675
Thanks for sharing this @millalm. I have already had to fight for mum with some medical issues that weren't being attended to appropriately and it took repeated prompts until I spoke to the district nurses (community nurses) myself. But, your example is significant at revealing how bad things are in other countries and the direct care worse.

Just to highlight on a global level and I'm qouting the World Health Organisation (WHO, 2019) say this:

'Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year'.
This implies one new case of dementia every 3.2 seconds. Forecasts predict the following:

'The total number of people with dementia is projected to reach 82 million in 2030 and 152 million by 2050.'
The total global cost of dementia is already in excess of 1 trillion US dollars (Alzheimer's Disease International) this is not just formal care but also informal care (the cost incurred to family and friends who take on caring roles) and this will continue to rise. The mechanisms we have in place now are already unsustainable. But this is global (macro level) when we talk at this level it becomes far removed from the reality of the micro level -that is us the very people who are affected by dementia and our day to day battles with dementia care.

Few countries are really addressing how to approach this increasing demand and how to address adequate care provision, the UK is guilty of this as well. Privatisation of the dementia care system is doomed to fail and lead to poor care as demand outstrips supply and profiteering shifts up the cost to those afflicted and their families, while care homes will struggle to provide good care and the situation will be as you have described if not worse for many. The system we have today is not going to succeed and is already failing. Profiteering from dementia has to stop and we have to find a better alternative to private care homes. People will have to make a contribtuion, but care provision can be done more fairly and with better results than we have currently.

One last point worth mentioning, qouted directly from the World Health Organisation (2019)

'People with dementia are frequently denied the basic rights and freedoms available to others. In many countries, physical and chemical restraints are used extensively in care homes for older people and in acute-care settings, even when regulations are in place to uphold the rights of people to freedom and choice.

An appropriate and supportive legislative environment based on internationally-accepted human rights standards is required to ensure the highest quality of care for to people with dementia and their carers.'
Wow

You are amazing thank you, I’m good at emotive aspect but my brain mush means I’m not able to collate information like this. what an amazing advocate you are
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Well today I have met finally with the care home manager. It went well and I think I have relayed my concern that she failed to simply keep me informed about developments. I asked her to summarise what the issues were with mum rather than ask me to look at documentation -which to be frank is seldom truly reflective as people omit all the facts. I can say I am now informed of where mum is at and how quickly she has deteriorated with another downturn of this disease.

I also relayed my thanks to her and her team for accepting mum at what was a difficult time and gave very positive feedback on her staff who mostly have been good and kind, although unable to fully meet mums needs. I didn't raise my other concerns as I have already done this. She was surprised that the meeting was more positive and hopefully a lesson learned in communication for the future. I know its not an easy job, but equally, my concern is how CH's conduct themselves when my mum is at the centre of problems.

Time to move on to the EMI unit. Waiting to hear confirmation from mums SW, but I know the home have been out to assess mum properly and she has been accepted. Her room is waiting, ironically number 21, the same has her current house number :eek:
 

Helly68

Registered User
Mar 12, 2018
637
@Palerider it is hard to relay feedback in a way that is constructive, especially when things have gone wrong. It sounds as though you did a great job.
I find as Mummy has been in her EMI unit for a while, I have got to know the staff and try to speak to them regularly and attend as many best interest or other meetings as I can. We are honest about her ASBO outbursts, and I try to do what I can to help them manage this, it isn't easy and I am lucky that the home is good and has made huge efforts to support her, usually while she trys to bite the staff....
I wish you all the best for the new Unit. Hopefully they have a better understanding of her needs.
 

Sarasa

Registered User
Apr 13, 2018
1,399
That sounds like a positive meeting @Palerider. I'm going to see the manager at mum's care home tomorrow. No particular reason but just want to have a chat about how things are going from their point of view in a slightly more formal manner than chatting to carers on the hoof. I also want to flag up it's her birthday in a couple of months. The home tends to push the boat out for birthdays and I'd like to get a dance show in for mum and the other residents.
Glad the new home is sorted as well . Hope the move over to it goes smoothly.
 

Pete1

Registered User
Jul 16, 2019
770
Hi @Palerider, firstly sorry to hear that Mum has deteriorated further, even though it is expected it's still difficult to hear. However, all you really want is to be kept honestly apprised of what is working well and what are areas of concern, all done in a timely manner, be that Domiciliary or Residential Care providers. I have experienced both ends of the spectrum (the worst and the best), the most frustrating thing is that is one of the easiest areas to get right! Pleased that you have had the meeting - that had to happen for your own peace of mind. I hope the move goes as smoothly as these things can (appreciate it's a stressful situation).
 

canary

Registered User
Feb 25, 2014
12,621
South coast
I think you did amazingly well to make that meeting into a positive experience.
I do hope your mums move goes well and she settles in her new place.
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Just off the phone with the invisible brother and I have decided its time now to have a serious conversation with him. Today he was telling me I have to sell mums house and everything in it of value and place it into to Trust for mum 'just in case she needs it' -erm and his ulterior motive??? -meanwhile I was nearly asleep listening to this. But he doesn't know I am mums LPA for property and financial affairs and frankly its all in hand.

Mums house will be sold as per the requirements for social care, the equity release mum and dad took out will be paid off and the remaining balance used to pay for mums care. Sentimental artefacts will not be sold off and will be redistributed to siblings as per mums wishes. There will be no 'we' in this equation it will be 'I' and that is about to be explained in detail to my brother, who has not stopped going on and on about money, and I am sick of this relentless interest about his inheritance as if there will be anything left anyway. I know he's hard up and needs money -but don't we all -meh he can jog on, the conversation will start nicely but any messing and I will change tact.
 

Pete1

Registered User
Jul 16, 2019
770
he can jog on, the conversation will start nicely but any messing and I will change tact.
Well said @Palerider, it's like a vulture circling - you obviously know his style.

I found it to be an extremely emotional and quite traumatic process clearing my Mum's stuff (and my sibling was very supportive and helped me do it, which is what you would hope for). You Mum would be pleased you were carrying out her wishes.
 

Splashing About

Registered User
Oct 20, 2019
433
It sounds like he needs his expectations managed. Maybe that will help him focus on the emotional relationship he has with his mum rather than a financial relationship
 

canary

Registered User
Feb 25, 2014
12,621
South coast
Yes, Pete, I found clearing and selling mums bungalow very upsetting too. A friend of mums helped me to do it, but I would still open a cupboard and find a blast from the past and have to go into another room to get my composure back. I found wine helped enormously.
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
@Palerider it is hard to relay feedback in a way that is constructive, especially when things have gone wrong. It sounds as though you did a great job.
I find as Mummy has been in her EMI unit for a while, I have got to know the staff and try to speak to them regularly and attend as many best interest or other meetings as I can. We are honest about her ASBO outbursts, and I try to do what I can to help them manage this, it isn't easy and I am lucky that the home is good and has made huge efforts to support her, usually while she trys to bite the staff....
I wish you all the best for the new Unit. Hopefully they have a better understanding of her needs.
Thanks @Helly68, the problems with mum are at night and she has been very aggressive if she needs intervention (help). The EMI unit is more geared up for this kind of behaviour so hopefully they will be able to cope with this when it happens.
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
It sounds like he needs his expectations managed. Maybe that will help him focus on the emotional relationship he has with his mum rather than a financial relationship
Hmm this is the problem, he is trying to manage things in a way how he wants them managed, rather than how they need to be managed and yes he needs to go and visit mum more and make the most of the time left
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Dont envy you that conversation, Simon, but then I hate confrontation
I don't like confrontation either, but sometimes we have to challenge things when a situation isn't workable. We shall see how it goes @canary. This won't be the first time with him but it will be the last. I'm not gving him my new address or new home phone number when I've moved -I just want some peace
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Well said @Palerider, it's like a vulture circling - you obviously know his style.

I found it to be an extremely emotional and quite traumatic process clearing my Mum's stuff (and my sibling was very supportive and helped me do it, which is what you would hope for). You Mum would be pleased you were carrying out her wishes.
I can hear the cogs turning in his head all this distance away :rolleyes:

Yes I really do have to start sorting things now, going through mums stuff is going to be emotional, I've purposely left it until I have to start sorting the house out, but its nearly time to move on with this
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
That sounds like a positive meeting @Palerider. I'm going to see the manager at mum's care home tomorrow. No particular reason but just want to have a chat about how things are going from their point of view in a slightly more formal manner than chatting to carers on the hoof. I also want to flag up it's her birthday in a couple of months. The home tends to push the boat out for birthdays and I'd like to get a dance show in for mum and the other residents.
Glad the new home is sorted as well . Hope the move over to it goes smoothly.
thanks @Sarasa I think keeping in touch with the manager is a good idea as it makes them relise you are there. I hope they agree to the dance show and make your mums birthday special :)
 

Palerider

Registered User
Aug 9, 2015
1,816
North West
Hi @Palerider, firstly sorry to hear that Mum has deteriorated further, even though it is expected it's still difficult to hear. However, all you really want is to be kept honestly apprised of what is working well and what are areas of concern, all done in a timely manner, be that Domiciliary or Residential Care providers. I have experienced both ends of the spectrum (the worst and the best), the most frustrating thing is that is one of the easiest areas to get right! Pleased that you have had the meeting - that had to happen for your own peace of mind. I hope the move goes as smoothly as these things can (appreciate it's a stressful situation).
Yes I think this is definitely another downturn with mums dementia - she has declined rapidly since October. But this is the nature of this disease, just as we accept one thing, something else comes along to upheave it all....and so it keeps on like that, I just hope the very end stage isn't prolonged.:(