What is on a Carer's Wish List?

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
This is not a petition or a campaign, it is just me looking for ideas.

I have a local politician very interested in furthering the cause of Carers in this region, and raising general awareness.

She has asked me if I will write a blog for her - to go on her blog - I have said I will.

She has also asked if I am willing to speak to media - yes to that as well.

Then I got to thinking "What exactly IS it that I am looking for?" and what are we all looking for.......

Thoughts on this, please?

Here is a start - mine are:-

1) More information on how things are perceived by the person with dementia ( to help me understand their world)
2) Short term respite - there is nothing in this area at all.
3) Government acknowledgement of what we do - Carer's Allowance for all ages regardless of State Pension - and even an enhanced allowance for those caring for PWD as they are victims sometimes more than the PWD.
4) 24/7 Call line, similar to Samaritans, but specifically for carers of PWD.

what are yours?
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
This is not a petition or a campaign, it is just me looking for ideas.

I have a local politician very interested in furthering the cause of Carers in this region, and raising general awareness.

She has asked me if I will write a blog for her - to go on her blog - I have said I will.

She has also asked if I am willing to speak to media - yes to that as well.

Then I got to thinking "What exactly IS it that I am looking for?" and what are we all looking for.......

Thoughts on this, please?

Here is a start - mine are:-

1) More information on how things are perceived by the person with dementia ( to help me understand their world)
2) Short term respite - there is nothing in this area at all.
3) Government acknowledgement of what we do - Carer's Allowance for all ages regardless of State Pension - and even an enhanced allowance for those caring for PWD as they are victims sometimes more than the PWD.
4) 24/7 Call line, similar to Samaritans, but specifically for carers of PWD.

what are yours?
Thanks MaryJoan got it now.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
I believe a lot of what we want and need is already out there in most cases but if you are new to caring for a PWD then you don't necessarily know it is there or how to access it.

Example:

On the bus last week I chatted to the woman next to me who was caring for her mother who had mixed dementia. She was uncharacteristically nasty and aggressive to this daughter who was understandably distressed. The mother had been discharged several years ago from the Memory clinic with Aricept. Her GP was hopeless.

I told this woman that she could go back to the consultant and have the medication reviewed either by self referral or through her GP. She had no knowledge of this and thought they just had to struggle on until the mother died.

I take John to the same clinic where I asked not to be discharged and go every six months with him. I know it is mostly routine but I feel the consultant now knows him and myself very well and should an issue arise I can't cope with then I feel I have her support.

My guess is that many of the services in place are understood only hazily by carers already stressed who cannot take it all in. Perhaps regular visits eg every six months to the home to see how things are going would be of great help if only for information and advice.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
@Jorbin has started a thread about having an information pack at the time of diagnosis https://forum.alzheimers.org.uk/threads/information-pack.110035/

I think this could be a real help to PWDs and their carers.
It could contain basic information about dementia (like the Alz Soc fact sheets), information on local services available, advice on applying for benefits like Attendance Allowance/PIP, Carers Allowance etc and where to go to help help for medical problems in the future, as a minimum.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Thank you. I would like a named social worker who takes a close eye on the situation. Information about what happens if I am too ill to cope any more at short notice. Nappies free on prescription without the demeaning incontinence measurement business (if you have not encountered this you are lucky!). Thank you for doing this.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
I really like the idea of enhanced allowance for carers....but for carers of anyone with an illness not paid for by NHS. I believe MS patients are in the same position as someone with dementia? When my late husband had cancer, I gave up teaching and had just £65 a week, I think it was. But we didn’t have to pay for his care, or respite.
 

rhubarbtree

Registered User
Jan 7, 2015
501
0
North West
Day care available in local nursing homes. If I had my way they would not be given a licence unless they provided day care as well.
 

fortune

Registered User
Sep 12, 2014
146
0
A realistic government response to meet the financial impact of caring. Who can live off carer's allowance? Who has moved the PWD into their home and facing massive heating bills? Who has moved into the PWD's home to care and lost PPR exemption on their own home? Who is both carer and attorney and facing legally impossible conflicts of interest? The recent government consultation on dementia care has basically an empty page on carer's finances.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
A realistic government response to meet the financial impact of caring. Who can live off carer's allowance? Who has moved the PWD into their home and facing massive heating bills? Who has moved into the PWD's home to care and lost PPR exemption on their own home? Who is both carer and attorney and facing legally impossible conflicts of interest? The recent government consultation on dementia care has basically an empty page on carer's finances.

I would like a bit more recognition and it should be easier to get carers allowance without this never ending round of claims taking 3 months before being refused and then having to go through endless useless phone calls and being fobbed off by people who are obviously bored with their jobs.

I would like a bit of recognition and even a thank you from my sibling for keeping his father out of a care home for the last year while he is able to carry on with his life unaffected by his fathers plight.

I would like a bit of help now and then.
 

Rosie4u

Registered User
Jun 22, 2017
219
0
South Manchester
I would like a ‘handbook’ for the carer with the diagnosis and a course to learn how to properly look after someone - though in my case by diagnosis I couldn’t leave my OH on his own.
I would also like Alzheimer’s DISEASE to be recognised as a medical condition needing regular monitoring and support not a social issue
I would also like state funded convalescent / strength building / respite for people with this illness And YES I think taxes should go up to pay for it - your care should not depend on your own finances .
Sorry that got into a rant:D
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
I agree @Rosie4u . Alzheimer's and othe dementias should be treated as a medical and not a social problem and taxes have to go up to pay for it.

I would like someone else to look after my dad so I can be his daughter. Even if I get someone in to do the hands on caring (which I will) I still have to act as his administrator and project manager. It's so time consuming I don't have time for a relationship with my dad anymore.
 

kindred

Registered User
Apr 8, 2018
2,937
0
I am so grateful to you for doing this survey! Gxx it's raising such important things for us.
 

worried2

Registered User
Aug 1, 2010
27
0
End the unfair financial treatment of those suffering from dementia relative to other medical conditions. Pool the risks and everyone shares the costs.
For those combining caring with working: the right to flexible / part time working and paid carer’s leave when emergencies occur.
 

kindred

Registered User
Apr 8, 2018
2,937
0
End the unfair financial treatment of those suffering from dementia relative to other medical conditions. Pool the risks and everyone shares the costs.
For those combining caring with working: the right to flexible / part time working and paid carer’s leave when emergencies occur.
I so so agree. Gx
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
More recognition for carers whilst caring

Especially financial

recognition of a carer once they finally don’t need to be a carer. Full time carer may not be in a position to return to work, may loose where they live, and struggle with life after caring

again it’s mostly to do with financial issues let alone the emotional issues.

Less brick walls put up against carers when they are seeking support just for themselves

Less guilt tripping from those here to help. We have enough guilt already, even though it’s unecessary guilt.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Everyone!

Thank you so very much - you are bringing up thoughts I could not have imagined - keep them coming, the more we get and from diverse people and situations - the better it is to paint a picture.

Do lots of us feel pushed into a corner we can't get out of? I do, I know

thanks again
 

sah

Registered User
Apr 20, 2009
332
0
Dorset
This is not a petition or a campaign, it is just me looking for ideas.

I have a local politician very interested in furthering the cause of Carers in this region, and raising general awareness.

She has asked me if I will write a blog for her - to go on her blog - I have said I will.

She has also asked if I am willing to speak to media - yes to that as well.

Then I got to thinking "What exactly IS it that I am looking for?" and what are we all looking for.......

Thoughts on this, please?

Here is a start - mine are:-

1) More information on how things are perceived by the person with dementia ( to help me understand their world)
2) Short term respite - there is nothing in this area at all.
3) Government acknowledgement of what we do - Carer's Allowance for all ages regardless of State Pension - and even an enhanced allowance for those caring for PWD as they are victims sometimes more than the PWD.
4) 24/7 Call line, similar to Samaritans, but specifically for carers of PWD.

what are yours?

An understanding that not all dementia sufferers are elderly and retired. Those of us with younger partners-who have had to stop work early and lose their income- have often had to give up our own careers early. This also has a huge knock on affect on a carer's occupational pensions-for ever. We still have children at home and mortgages to pay-but downsizing would result in losing even more capital. I know I'm not the only one to have given up a hard fought for career -which is tough in itself-and struggle to try to build a future for my children. My husband's illness has cost me more in lost income than him-how is that right or fair?
 

kindred

Registered User
Apr 8, 2018
2,937
0
Everyone!

Thank you so very much - you are bringing up thoughts I could not have imagined - keep them coming, the more we get and from diverse people and situations - the better it is to paint a picture.

Do lots of us feel pushed into a corner we can't get out of? I do, I know

thanks again
This is magnificent. Thank YOU. And yes to the pushed into a corner. A kind of slow pushing into the registered carer role, never asked, just gently pushed and then demeaned and demoralised until no strength to have a point of view any more. Gx
 

Staff online

Forum statistics

Threads
138,128
Messages
1,993,223
Members
89,789
Latest member
Anne Paterson