If we ban the word 'support'....

[Seaholly]

If you could go back in time, to when your encounter with dementia first started, what advice and practical help do you wish you'd had?
When I look back, there are far too many vague promises of 'support' ...
At work, "we need to find you some more support" - nothing happened!
Social Services "we can support you" - how exactly? Nothing happened apart from nobody listening when I suggested mum might have dementia!
Care agency (now fired) "We're here to support you!" That would be by trying to kill mum by leaving dentures in over night then?!
Local Authority "Would you like to join a support group?" No - because every time anyone mentions the 'S-Word' now, I feel like screaming!!!

What I really wanted in my 'Top 5 Real Things That Would Have Helped' was this:

• Waaaaay back in time, right back to school and GCSE Biology and Life Skills classes, I wish dementia was there on the syllabus, not to frighten us, but to start to de-stigmatise it and make it clear that it can happen to anyone and everyone should be aware of the signs.
• More awareness from my mum's optician. If her eyesight was so good for her age, what was going wrong when she started to not recognise faces and lose the ability to read? How is it she and dad knew chapter and verse on age-related macular degeneration despite mum's MD not being especially severe and nothing - not a sausage - about the possibility of PCA, Lewy Bodies Dementia, Alzheimer's etc.?
• GP, care agency and relatives who were much more aware of hosting and who actually listened to me! How come 2 agencies with accredited dementia training failed so miserably to recognise the signs, or to flag up contradictory patterns of behaviour with me, rather than jump to conclusions based on their own smug preconceptions? An example: mum told a carer that she was upset I had 'thrown her clothes away so she had nothing to wear' when in fact, a few months prior, mum and I had a fun time sorting out what fit, what no longer fit because she's shrunk; what could go to the local hospice shop (which pleased her greatly) and how we could make things simple by buying a clothes rail and me just putting the week's clothes on there. The carer, instead of raising mum's upset outburst with me, just took it to her boss, who proclaimed that it was clearly MY fault mum had these down spells because I was basically no good as a carer!
• Local Authority help that is based on practicality and understanding of the capabilities of a PWD - not a one-size-fits-all approach. We have a re-turn contraption gathering dust in the hallway for us to stub our toes on, because it doesn't work on the carpets and mum refuses to use it. She had a brave and successful attempt when the physio brought it - so therefore she can use it no problem if we just practice - right?! They won't even come and take it back!
• Proper financial assistance for people who choose to care for parents and proper training.

 

[CardiffGirlInEssex]

If you could go back in time, to when your encounter with dementia first started, what advice and practical help do you wish you'd had?
When I look back, there are far too many vague promises of 'support' ...
At work, "we need to find you some more support" - nothing happened!
Social Services "we can support you" - how exactly? Nothing happened apart from nobody listening when I suggested mum might have dementia!
Care agency (now fired) "We're here to support you!" That would be by trying to kill mum by leaving dentures in over night then?!
Local Authority "Would you like to join a support group?" No - because every time anyone mentions the 'S-Word' now, I feel like screaming!!!

What I really wanted in my 'Top 5 Real Things That Would Have Helped' was this:

• Waaaaay back in time, right back to school and GCSE Biology and Life Skills classes, I wish dementia was there on the syllabus, not to frighten us, but to start to de-stigmatise it and make it clear that it can happen to anyone and everyone should be aware of the signs.
• More awareness from my mum's optician. If her eyesight was so good for her age, what was going wrong when she started to not recognise faces and lose the ability to read? How is it she and dad knew chapter and verse on age-related macular degeneration despite mum's MD not being especially severe and nothing - not a sausage - about the possibility of PCA, Lewy Bodies Dementia, Alzheimer's etc.?
• GP, care agency and relatives who were much more aware of hosting and who actually listened to me! How come 2 agencies with accredited dementia training failed so miserably to recognise the signs, or to flag up contradictory patterns of behaviour with me, rather than jump to conclusions based on their own smug preconceptions? An example: mum told a carer that she was upset I had 'thrown her clothes away so she had nothing to wear' when in fact, a few months prior, mum and I had a fun time sorting out what fit, what no longer fit because she's shrunk; what could go to the local hospice shop (which pleased her greatly) and how we could make things simple by buying a clothes rail and me just putting the week's clothes on there. The carer, instead of raising mum's upset outburst with me, just took it to her boss, who proclaimed that it was clearly MY fault mum had these down spells because I was basically no good as a carer!
• Local Authority help that is based on practicality and understanding of the capabilities of a PWD - not a one-size-fits-all approach. We have a re-turn contraption gathering dust in the hallway for us to stub our toes on, because it doesn't work on the carpets and mum refuses to use it. She had a brave and successful attempt when the physio brought it - so therefore she can use it no problem if we just practice - right?! They won't even come and take it back!
• Proper financial assistance for people who choose to care for parents and proper training.

Oh all this is so, so true. I would add, social workers not saying "It's her choice and she has capacity to make it even if it's a bad choice " when the "choice" is because the person no longer knows how to wash/change clothes/feed herself etc. They need to start believing less what the PWD says and more of what the family/carers explain.

 

[Weasell]

I would have found @Grannie G ’s compassionate Communication earlier.

I would like it to have a little spot of its own on the home page, it’s potential to improve the lives of so many visitors to this site is immense.
Communication is such a powerful thing,

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Whisperer]

Hello

Looking back I would have appreciated more help and guidance. Come out of the Memory Clinic with nothing really. Get a report a few weeks later but only after mum had been referred back to the GP. Well thank you for the help and support.

Social services hide behind capacity arguments to save money. If your self funding again it is hello and goodbye.

Members of the medical profession are hit and miss, some good some.........

Be advised of the unwritten carers charter. You get little support, have limitless responsibility and are mostly ignored by officialdom. You are on your own in reality.

 

[nae sporran]

When I left school in 1985 Dementia was dismissed as memory getting worse due to old age if anyone even mentioned it at all, so I agree with your first point, @Seaholly.
I found the Carers Support Centre when my partner's Dementia took a turn for the worse at the end of 2013, but did not join any carers groups for another 3 years and did not know about this place for another year and took a year to get involved. Better late than never I suppose.

 

[lollyc]

If you could go back in time, to when your encounter with dementia first started, what advice and practical help do you wish you'd had?
When I look back, there are far too many vague promises of 'support' ...
At work, "we need to find you some more support" - nothing happened!
Social Services "we can support you" - how exactly? Nothing happened apart from nobody listening when I suggested mum might have dementia!
Care agency (now fired) "We're here to support you!" That would be by trying to kill mum by leaving dentures in over night then?!
Local Authority "Would you like to join a support group?" No - because every time anyone mentions the 'S-Word' now, I feel like screaming!!!

What I really wanted in my 'Top 5 Real Things That Would Have Helped' was this:

• Waaaaay back in time, right back to school and GCSE Biology and Life Skills classes, I wish dementia was there on the syllabus, not to frighten us, but to start to de-stigmatise it and make it clear that it can happen to anyone and everyone should be aware of the signs.
• More awareness from my mum's optician. If her eyesight was so good for her age, what was going wrong when she started to not recognise faces and lose the ability to read? How is it she and dad knew chapter and verse on age-related macular degeneration despite mum's MD not being especially severe and nothing - not a sausage - about the possibility of PCA, Lewy Bodies Dementia, Alzheimer's etc.?
• GP, care agency and relatives who were much more aware of hosting and who actually listened to me! How come 2 agencies with accredited dementia training failed so miserably to recognise the signs, or to flag up contradictory patterns of behaviour with me, rather than jump to conclusions based on their own smug preconceptions? An example: mum told a carer that she was upset I had 'thrown her clothes away so she had nothing to wear' when in fact, a few months prior, mum and I had a fun time sorting out what fit, what no longer fit because she's shrunk; what could go to the local hospice shop (which pleased her greatly) and how we could make things simple by buying a clothes rail and me just putting the week's clothes on there. The carer, instead of raising mum's upset outburst with me, just took it to her boss, who proclaimed that it was clearly MY fault mum had these down spells because I was basically no good as a carer!
• Local Authority help that is based on practicality and understanding of the capabilities of a PWD - not a one-size-fits-all approach. We have a re-turn contraption gathering dust in the hallway for us to stub our toes on, because it doesn't work on the carpets and mum refuses to use it. She had a brave and successful attempt when the physio brought it - so therefore she can use it no problem if we just practice - right?! They won't even come and take it back!
• Proper financial assistance for people who choose to care for parents and proper training.

[/QOTE]
Well, firstly an apology if this turns into an epic post, but this has been festering for a long time, and I've been debating about posting. And now the lid is off.... Here goes....

This is our story:
We get diagnosed at a Memory Clinic (after a year of "resolving delirium" - yeah right! ) and I - so, so stupidly - assume that we will get some support (yup, there's that word again), but what we actually get is a card with Alzheimers Society details. And that's it. Nothing. No follow ups, nurse appointments, etc., etc.
I think perhaps we've somehow slipped down a crack? As I meet more carers, I think maybe we've been unlucky in the postcode lottery (although we live in the Home Counties)? And 3 years later I find TP. And what do you know? Nearly everyone else is blundering around in the dark too! Now, whilst there is some comfort to be gained from that, that's not really the point.

What I would like to see is:

A local "Dementia Services Co-ordinator" - someone who collates ALL the stuff you need to know i.e POA, Attendance Allowance, dementia clubs, whether national charity , or local church AND any other activities, however diverse, that might be suitable for those with dementia. That's old age clubs, local attractions, walking groups etc., etc., etc. You get the idea.
All this information to be put into a brochure that you get given with your diagnosis, and that's available from GP surgeries and libraries, because, guess what? NOT EVERYONE DOES INTERNET!!! All this information to be available over the phone, and as a download.

I would like to see care homes offering daycare ( I know some do).
I would like to see care homes offering baths / showers for non-residents.
I would like to see Local Authorities, Charities (local and national) and care homes pooling resources and facilities to provide useful activities for residents and non-residents alike.
I would like to see proper funding for dementia.

And an understanding that carers are often run ragged by their PWD. We have neither the time, nor the inclination to spend hours tracking down support, or being sent round in circles by so-called experts.

Oh well, I can dream....

(And finally, apologies if this is a bit disjointed - my PWD was delivered back from a 3 weeks hospital stay mid post, and I sort of lost the thread!)

 

[jennifer1967]

i find it hard that social services have no joined up writing when it comes to a couple. we are separate but we are not separate, we are interlinked and if it doesnt work for one, it doesnt work for the other. i know him inside out and backwards and same for me. we live in the same house but they try and put us in 2 different boxes. if you dont co=operate with one then the other doesnt want to know. us against the world. the other problem people have they dont relate to age gap marriages and have to use my husbands age to get help rather than mine which would make me too young. need to be inclusive.

 

[Andrea57]

Hello

Looking back I would have appreciated more help and guidance. Come out of the Memory Clinic with nothing really. Get a report a few weeks later but only after mum had been referred back to the GP. Well thank you for the help and support.

Social services hide behind capacity arguments to save money. If your self funding again it is hello and goodbye.

Members of the medical profession are hit and miss, some good some.........

Be advised of the unwritten carers charter. You get little support, have limitless responsibility and are mostly ignored by officialdom. You are on your own in reality.

My thoughts exactly on social services if you're self funding ,that is my experience lately when I needed help when they knew mum was self funding , its been 3 weeks since the new social worker/support worker said she would phone at 11am Tues and nothing. I know they are busy but don't say it if you're not going to do it.

 

[Seaholly]

So it's not just me then? ( I suspected not!!!)

I've also found that self-funding = left to flounder, more often than not.
I've also found that the lack of joined-up working within our local authority is frightening and frankly dangerous. Messages don't get passed on and anyone who actually wants to step up and look after their own PWD seems to be regarded with a 'yeah - she'll keep!' attitude. Calls are not passed on. People don't call back. I've actually given up on our County Council because they clearly think it's okay to have 2 vulnerable people under the same roof, each with fairly complex needs, with just one completely untrained carer (muggins, here!) left alone with them during the day on average 60 hours a week.
Well, I mean, I have been offered 'support' ?

 

[canary]

At least if you are self-funding you have the opportunity to search out care/respite and just implement it yourself. If you are dependant on Local Authority funding you have to first persuade SS that the care is necessary and because the LA is so under funded it can be a struggle to persuade them - especially of your PWD says they dont want carers/respite/residential care. SS take the view that the PWD has not only to have their choices respected and are free to make unwise choices (its in the mental health act), but that they (SS) have to abide by the PWDs "choice" even when it must be pretty obvious that they cannot make this choice at all.

Things only seem to happen in a crisis - all the while you are there, plugging all the gaps and keeping them safe, you will be left to get on with it. I find it appalling that, all too often, the only way to get support is to step back, put your PWD at risk and provoke a crisis.

 

[Andrea57]

So it's not just me then? ( I suspected not!!!)

I've also found that self-funding = left to flounder, more often than not.
I've also found that the lack of joined-up working within our local authority is frightening and frankly dangerous. Messages don't get passed on and anyone who actually wants to step up and look after their own PWD seems to be regarded with a 'yeah - she'll keep!' attitude. Calls are not passed on. People don't call back. I've actually given up on our County Council because they clearly think it's okay to have 2 vulnerable people under the same roof, each with fairly complex needs, with just one completely untrained carer (muggins, here!) left alone with them during the day on average 60 hours a week.
Well, I mean, I have been offered 'support' ?

This is so true. I too feel like the muggins although I can't not do it she's my mum.

 

[Andrea57]

At least if you are self-funding you have the opportunity to search out care/respite and just implement it yourself. If you are dependant on Local Authority funding you have to first persuade SS that the care is necessary and because the LA is so under funded it can be a struggle to persuade them - especially of your PWD says they dont want carers/respite/residential care. SS take the view that the PWD has not only to have their choices respected and are free to make unwise choices (its in the mental health act), but that they (SS) have to abide by the PWDs "choice" even when it must be pretty obvious that they cannot make this choice at all.

Things only seem to happen in a crisis - all the while you are there, plugging all the gaps and keeping them safe, you will be left to get on with it. I find it appalling that, all too often, the only way to get support is to step back, put your PWD at risk and provoke a crisis.

Crisis point was where I was that's why adult care/social services were involved but then that was it nothing , really just get on with it till the next crisis.??

 

[lollyc]

Completey failed to post this correctly the first time, doh!

Well, firstly an apology if this turns into an epic post, but this has been festering for a long time, and I've been debating about posting. And now the lid is off.... Here goes....

This is our story:
We get diagnosed at a Memory Clinic (after a year of "resolving delirium" - yeah right! ) and I - so, so stupidly - assume that we will get some support (yup, there's that word again), but what we actually get is a card with Alzheimers Society details. And that's it. Nothing. No follow ups, nurse appointments, etc., etc.
I think perhaps we've somehow slipped down a crack? As I meet more carers, I think maybe we've been unlucky in the postcode lottery (although we live in the Home Counties)? And 3 years later I find TP. And what do you know? Nearly everyone else is blundering around in the dark too! Now, whilst there is some comfort to be gained from that, that's not really the point.

What I would like to see is:

A local "Dementia Services Co-ordinator" - someone who collates ALL the stuff you need to know i.e POA, Attendance Allowance, dementia clubs, whether national charity , or local church AND any other activities, however diverse, that might be suitable for those with dementia. That's old age clubs, local attractions, walking groups etc., etc., etc. You get the idea.
All this information to be put into a brochure that you get given with your diagnosis, and that's available from GP surgeries and libraries, because, guess what? NOT EVERYONE DOES INTERNET!!! All this information to be available over the phone, and as a download.

I would like to see care homes offering daycare ( I know some do).
I would like to see care homes offering baths / showers for non-residents.
I would like to see Local Authorities, Charities (local and national) and care homes pooling resources and facilities to provide useful activities for residents and non-residents alike.
I would like to see proper funding for dementia.

And an understanding that carers are often run ragged by their PWD. We have neither the time, nor the inclination to spend hours tracking down support, or being sent round in circles by so-called experts.

Oh well, I can dream....

(And finally, apologies if this is a bit disjointed - my PWD was delivered back from a 3 weeks hospital stay mid post, and I sort of lost the thread!)

 

[jennifer1967]

when my husband was diagnosed in march, we were told over the phone [ 2 wks before lockdown and days after my birthday wont forget that in a hurry] and left. with vascular dementia, there are no tablets, treatments. we were sent a book from alz. soc. and also a local alz. soc. navigator contacted us. then we were left until 6 wks ago when she called again and she has been such a support in chasing up services and her knowledge. her job is to support us both rather than some charities that only support the carers. i didnt want that as we come as a package and going through this together. the problem i had was i worked in a care home and most residents have one type or other of dementia, it hasnt helped me care for my husband as its a whole different ball game to care for someone you love and cant go home and put your feet up after a shift.

 

[Seaholly]

" its a whole different ball game to care for someone you love and cant go home and put your feet up after a shift."

Jennifer, that is exactly the point I wish I had managed to get through to the manager of the care agency I had to fire. She breezed in, proclaiming her vast experience working in care homes with people with dementia and after an introduction to mum that lasted about 2 minutes, she insisted that mum had been fully aware of her and the 'lovely chat' they had enjoyed (for the record, I know mum well enough to know that if she clasps someone's hand and says 'lovely to see you' and then looks blank, it is her way of saying , "I haven't a clue who you are - best try to be polite though!")

She then announced that since mum is not prescribed anything other than thyroxine, statins and asprin, she is 'clearly in very good health' .....

Finally, when I explained that I was, to a large extent dependent on the expert opinions and advice from people like her and I needed to have confidence in their advice, she said with a smirk (if she had known that was the very moment I had resolved to fire her, perhaps she wouldn't have smirked)

"She hasn't been violent yet? Oh, you've got it all to come then!"

Why, why, why are so many 'experts' who have Alzheimer's Society logos plastered all over their premises and claim they are so familiar and perceptive to dementia, so utterly, stupidly and wilfully blind to what is under their noses when it comes to PWD being cared for at home by their families? Why can't they listen to the family?

 

[jennifer1967]

i agree that family knows the person best so knows the changes and how to handle them. not every person does everything dementia is suppose cause them. its the same when a doctor says parents tend to know if their child is not right. need to trust those closest to the person. sometimes they dont think things through, eg my husband cant get into the bath, physically lift his legs over so the ot said we could put a board there he could sit on. i had to remind her that 1 he gets dizzy and 2 he still would have to lift his legs to get into the bath. he has a bed lever which is good until i change the bed so have to pull it out and put it back in again. its quite big and heavy and goes between bed and mattress. as i have problems with my back, i am going to look forward to bed changes. it helps him getting him out of bed.you will always get some people who know everything and like to say so.

 

[Catastrophe]

Completey failed to post this correctly the first time, doh!

Well, firstly an apology if this turns into an epic post, but this has been festering for a long time, and I've been debating about posting. And now the lid is off.... Here goes....

This is our story:
We get diagnosed at a Memory Clinic (after a year of "resolving delirium" - yeah right! ) and I - so, so stupidly - assume that we will get some support (yup, there's that word again), but what we actually get is a card with Alzheimers Society details. And that's it. Nothing. No follow ups, nurse appointments, etc., etc.
I think perhaps we've somehow slipped down a crack? As I meet more carers, I think maybe we've been unlucky in the postcode lottery (although we live in the Home Counties)? And 3 years later I find TP. And what do you know? Nearly everyone else is blundering around in the dark too! Now, whilst there is some comfort to be gained from that, that's not really the point.

What I would like to see is:

A local "Dementia Services Co-ordinator" - someone who collates ALL the stuff you need to know i.e POA, Attendance Allowance, dementia clubs, whether national charity , or local church AND any other activities, however diverse, that might be suitable for those with dementia. That's old age clubs, local attractions, walking groups etc., etc., etc. You get the idea.
All this information to be put into a brochure that you get given with your diagnosis, and that's available from GP surgeries and libraries, because, guess what? NOT EVERYONE DOES INTERNET!!! All this information to be available over the phone, and as a download.

I would like to see care homes offering daycare ( I know some do).
I would like to see care homes offering baths / showers for non-residents.
I would like to see Local Authorities, Charities (local and national) and care homes pooling resources and facilities to provide useful activities for residents and non-residents alike.
I would like to see proper funding for dementia.

And an understanding that carers are often run ragged by their PWD. We have neither the time, nor the inclination to spend hours tracking down support, or being sent round in circles by so-called experts.

Oh well, I can dream....

(And finally, apologies if this is a bit disjointed - my PWD was delivered back from a 3 weeks hospital stay mid post, and I sort of lost the thread!)

Yes, yes, yes to it all. Can I add also that there should be an understanding that dementia is not just a loss of memory, it's a Hugh reduction in the ability to understand what is happening and the ability to think through a problem.

 

[Sam51]

I am new to this site and reading your comments and trying to support my mum ,I am very scared for the future .
I am ashamed to say that when I heard demensia in the past I just thought it was people forgetting as they get older ,how wrong I was .
It is one of the worst things I have come across and listening to all of you I have no idea how you cope Where is the support ?
Why the helll as demensia been overlooked ?
When you have a illness like cancer there is support out ther for the patient and carers (I know as my mother in law died last year with cancer )
My son had cancer as a teenager .
I felt that I could help them and turn to professional s for advice .
I have helped my own mum through ovarian cancer but now she as demensia I can't do anything because she refuses care and thinks there is nothing wrong she as given herself food poisoning twice in the last month .Surely I should be able to make decisions for her but she refuses to gave me power of attorney for her health and all this confidentialality is driving me mad .Why can't professional s listen to family who have known them all their life surely it would help every one .
Why as this all been swept under the carpet ?
It's like leaving my dog without treatment or help when it's ill .
My mum will end up going into care when she could have stayed at home
Sorry everyone for the rant ,you are all extrodinary and doing amazing ,take care of yourself s too x

 

[Palerider]

She then announced that since mum is not prescribed anything other than thyroxine, statins and asprin, she is 'clearly in very good health' .....

I'm really sorry but that made me have a fit of laughter and can only appreciate how irritating that kind of comment really was to me on my own journey with mum. My repsonse was always 'well no she clearly isn't is she?'

 

[Seaholly]

Yes, and even more laughable is the fact that the previous agency boss (I've had to fire 2 agencies) said much the same thing, although, just to give me some extra reassurance, to be fair, she did say, "your mother is in very good health for her age because she only takes XYZ....she doesn't present with any signs of dementia and really, at her age, something else will probably finish her off before dementia does anyway."
I have to focus all my energies on mum now, but when this is over, or if mum does have to go into full time residential care, I will be devoting some time to finding out exactly WHY there seem to be so many care agencies out there who claim to have training in dementia care but are so scarily clueless, tactless and downright dangerous in their assessments and advice.

Perhaps training for carers who go into family homes should include listening to some of us talk about our experiences and explain why, despite their 'specialist' training and accreditation, the service still falls so woefully short of the mark.