Our Priorities

[christine_batch]

Allowing us as next of kin access to Care Plan.

Allowing us as next of kin access to medication precribed to our loved ones.

Grant us the respect by Professional that we are not STUPID.

 

[Skye]

Dementia training for nurses and auxiliaries on A&E and general hospital wards.

 

[TinaT]

All reviews, meetings etc between professionals involved in forming future care plans to include at least one significant, carer

 

[Mameeskye]

Universal education to remove the fear which will allow respect and dignity.
Mum's friends have vanished, I am the only family member left who regularly visits. No one understands, they fear not being known and figure they can be of no use. Educate them so they can help.
Then funds for research will be easier to raise, people will get more respect and stimulation and can live a longer better life. The bogieman in the corner waiting to get you will disappear in bright light!

 

[Skye]

IT COULD BE YOU!

Even worse, IT COULD BE YOUR SOUL MATE!

Dementia is no respecter of intelligence, wealth, profession, personality or age.

 

[lesmisralbles]

DO NOT TALK TO ME AS IF RON IS NOT THERE
TALK TO HIM
LISTEN TO HIM
HE IS A PERSON
Barb

 

[117katie]

The List So Far

1. Listen and hear us
2. Speak out on behalf of those who cannot speak out on their own behalf
3. Show compassion for those in distress
4. Continuity of care
5. Rules for entitlement to care that are easily understood
6. Rules re. funding that are easily understood
7. Remember that these people are still a SOMEBODY
8. Stop turning a blind eye and allowing them to be treated as a NOBODY
9. Value us, the Carers, for saving the NHS thousands and thousands of pounds
10. Value us, the Carers, for actually knowing our loved ones
11. Value us, the Carers, as experts in Alzheimer’s/Dementia relevant to our loved ones.
12. Value us, the Carers, when we are trying to get the best for our loved ones
13. Act with speed, efficiency and empathy
14. Respect for all of us
15. Tolerance of all of us
16. Improved awareness of the problems we face
17. Respect for basic needs
18. Medical and professional care should be readily available
19. Support, financial and otherwise, should be readily available to maintain people in their own home for as long as possible
20. Respect for the need for choices
21. Respect for those who live without hope of ‘cure’
22. Respect for future generations that they might be given hope
23. Appropriate and accessible support packages to enable Carers to support their own needs alongside their caring responsibilities
24. Appropriate financial support where necessary
25. Complete removal of the need to ‘do battle’ constantly
26. Treat our loved ones as individuals, and with compassion and dignity
27. Make it compulsory to correct AD/Dementia training
28. Arrange for Social Services to answer the phone
29. Arrange for Social Services to remember that when they give us an Emergency telephone number which then we have to ring, that it is an Emergency and that they should not keep us waiting all day for someone to respond
30. To enable us, the Carers, to organize time out for Me/Us
31. Allow us, as Next of Kin, access to the Care Plan
32. Allow us, as Next of Kin, access to the medications prescribed to our loved ones
33. Grant us the respect of Professionals that we are not STUPID.
34. Dementia training for nurses and auxiliaries on A&E and general hospital wards
35. All reviews, meetings etc between professionals involved in forming future care plans to include at least one significant Carer
36. Universal education to remove the fear which will allow respect and dignity
37. Funds for research
38. It could be you! Even worse, it could be your soul mate – dementia is no respecter of intelligence, wealth, profession, personality or age
39. Do not talk to me as if he/she is not there – talk to him/her; listen to him/her; he/she is a person too



Where are all the TP men? Come on, Boys, we need you too to contribute your own Priorities to the list which, so far, reflects only the TP Women's priorities.

Katie

 

[Skye]

No postcode lottery. Equal access to medication, funding and care, wherever we live.

 

[117katie]

Permission to change my Priority number 1?

I think I got it the wrong way round when I wrote at the start of this thread “Listen and Hear”. It should have read “Hear and Listen”. I had forgotten (!!!) that hearing ‘just happens’ for most people: it is simply that a sound has made its way into the ‘hearing system’. But listening is something you have to opt into; you can block out the sound that you have heard, or you can “listen to it”.

So I ask permission to change my first Priority to: Hear – Listen – See - Remember - Understand – Do.

Why do I ask permission to change it about? Well, I’ve spent the afternoon clearing out a load of papers with lots of shredding going on, and came across a well-worn scrap of paper on which I had written the following:

I hear and I forget
I see and I remember
I do and I understand

(Confucius)

No idea how long ago I wrote that down. But it rang a bell!! And, yes, i will slightly adapt it so as to meet the circumstances of all of us. With your permission, of course. So here goes:

If only we could ask them all to Hear what we say; to Listen to us; to See what we see; to Remember what they have seen; to Understand where we all are; and then to DO THE NECESSARY.

Over to you, Gals. Where are the Guys??

Katie

 

[bclark]

dear katie, as carers we all need to prioritise some time for us if you have a hobby or anything that make you feel good find time and dont feel guilty.bclark

 

[Tender Face]

Ok then ... under the heading 'Forward Planning' .... (this is thinking outside my own current box of making mum's life as happy and comfortable as I can for as long as I can) ........Katie, please pick the bones off this and feel free to interpret and articulate salient points better than I can:

Better estimates of 'probabilities'

1) in terms of prognosis
2) in terms of prevention

1) is the 'here and now' ...... to enable people to cope better with diagnosis, day to day living and caring ....... with any remote chance of forward planning ...... practically, emotionally, financially or otherwise .... Utopian thoughts again that we might see care packages with some semblance of forward planning before we actually hit crisis intervention on an individual level?

2) is back to my concern for future generations ........

I guess both hinge on investment in research for prevention and potential 'cure' (dedication of resources to identifying cause, and not just effect, of symptoms) ...... and following on - global education ....

As examples, concerns (prompted by this very thought provoking thread, thank you!) ......

I coach my son to eat '5 a day' and exercise to keep a healthy heart ..... not to smoke to avoid the risks of cancer .... etc etc ...... when he asks 'But how do I avoid getting Alzheimer's?' what can I say? ....... (I also coach him not to ever try mind altering drugs - yet I find myself hoping mum will secure them as she needs them?)

What is the impact of unpaid carers on future economies? Those of us working reduced hours .... giving up work for periods ... with subsequent reduced NI contributions, pensions etc ....... who will look after us when we cannot afford to pay for our own care if and when we need it because we have been unable to reach our own earning potential in lieu of caring for others? Do carers breed generations of future carers? That is not what I want for my own child. (I can feel an LPA coming on!)

How about simply not having a defeatist attitude (not you personally, Katie!!!!!) .... the government suggests there will be x thousand/million people suffering from dementia by 20XX ...... so do they increase taxes to fund more care? (Forward planning?) Or invest in trying to prevent the suffering on that scale if that's feasible? But who knows if that's feasible without some investment into research NOW!!!!!!? Speculate to accumulate and all that - if there were a cure/reason for dementia found and it could be prevented - so too could huge investment in unnecessary resource in the future?????

Huge amounts have been invested in Cancer Research, in HIV research etc (aside from charities) ........ giving hope to so many who otherwise had none ....... please, someone, tell me the same is happening in terms of dementia research? Perhaps just feeling a sense of being on an equal footing with other diseases which have often sounded, but not always been, a 'death knell' would be something ........???? Or am I just sounding like the bitter 'poor relation'?

Thanks, Katie. I know on one level this thread feels very 'political' but for me at least it has made me focus sharply on the impact dementia has had and continues to have on me as a 'carer' beyond the day-to-day practicalities of 'trying to look after mum' ........ and the longer term impact on the family holistically of having been faced with the challenges that caring for such a disease brings ........

Love, Karen, x

 

[Taffy]

Another priority.... Accreditation Agency staff should not only be accountable to government departments but relatives and residents as well.

 

[117katie]

Thanks, to all, so far.

I'll do another update on this one, once I've picked the FLESH off the BONES of Karen's latest epistle! Thanks, Tender Face. I knew you'd rise to the challenge. I'll fwd the bones back to you - but keep the fleshy bits, if I may.

Sorry if it sounded a bit political to you - wasn't meant to be, and it will be deposited on the desks of as many 'Bods' as I can think up, once we reach the 100 mark.

So, meanwhile, put your thinking caps on as to where YOU would like OUR PRIORITIES to land. Email and/or snail mail addresses of destinations can be sent by PM to me and I will do the necessary.

Katie

 

[Skye]

Karen -- re. money for research -- the article Jennifer linked to:

http://www.timesonline.co.uk/tol/life_and_style/health/article3554881.ece

gives money spent on research.

Cancer: £423,411,000

Alzheimer's: £3,157,578

 

[Tender Face]

Thanks Hazel, is that in ratio to number of sufferers, I wonder?

Just to throw another one in ..... 'acknowledgement/support for people in multiple caring roles' (think this has been raised before under claiming allowances for caring for ONE person for 35+ hours per week when many people probably 'care' for well in excess of 35 hours each week but not singularly for one person .....) ....... a thought prompted sadly by my son's suggested diagnosis today of glandular fever ...... quite how I am going to juggle the next few weeks ???

Karen

 

[Skye]

Oh heck, Karen! It never rains.........

I've no idea how you're going to cope, but knowing you, you will!

Your poor son. I hope it turns out not to be glandular fever. Let us know, please.

Thinking of you,

Love,

 

[117katie]

Half a ton!

1. Hear us – Listen to us – See what we see – Remember and learn from what you have seen – Understand how those with dementia and their carers feel – Do whatever is required to advance the care of those who need care
2. Speak out on behalf of those who cannot speak out on their own behalf
3. Show compassion for those in distress
4. Continuity of care
5. Rules for entitlement to care that are easily understood
6. Rules re. funding that are easily understood
7. Remember that these people are still a SOMEBODY
8. Stop turning a blind eye and allowing them to be treated as a NOBODY
9. Value us, the Carers, for saving the NHS thousands and thousands of pounds
10. Value us, the Carers, for actually knowing our loved ones
11. Value us, the Carers, as experts in Alzheimer’s/Dementia relevant to our loved ones.
12. Value us, the Carers, when we are trying to get the best for our loved ones
13. Act with speed, efficiency and empathy
14. Respect for all of us
15. Tolerance of all of us
16. Improved awareness of the problems we face
17. Respect for basic needs
18. Medical and professional care should be readily available
19. Support, financial and otherwise, should be readily available to maintain people in their own home for as long as possible
20. Respect for the need for choices
21. Respect for those who live without hope of ‘cure’
22. Respect for future generations that they might be given hope
23. Appropriate and accessible support packages to enable Carers to support their own needs alongside their caring responsibilities
24. Appropriate financial support where necessary
25. Complete removal of the need to ‘do battle’ constantly
26. Treat our loved ones as individuals, and with compassion and dignity
27. Make it compulsory to correct AD/Dementia training
28. Arrange for Social Services to answer the phone
29. Arrange for Social Services to remember that when they give us an Emergency telephone number which then we have to ring, that it is an Emergency and that they should not keep us waiting all day for someone to respond
30. To enable us, the Carers, to organize time out for Me/Us
31. Allow us, as Next of Kin, access to the Care Plan
32. Allow us, as Next of Kin, access to the medications prescribed to our loved ones
33. Grant us the respect of Professionals that we are not STUPID.
34. Dementia training for nurses and auxiliaries on A&E and general hospital wards
35. All reviews, meetings etc between professionals involved in forming future care plans to include at least one significant Carer
36. Universal education to remove the fear which will allow respect and dignity
37. Funds for research
38. It could be you! Even worse, it could be your soul mate – dementia is no respecter of intelligence, wealth, profession, personality or age
39. Do not talk to me as if he/she is not there – talk to him/her; listen to him/her; he/she is a person too
40. No postcode lottery: equal access to medication, funding and care, wherever we live
41. The provision of “time for Carers” to pursue a hobby in their own without feeling guilty
42. Immediate planning on a global level to allow for improved information in terms of prognosis, to enable people to cope better with diagnosis, and to enable care packages to contain really useful provision today, before crisis points are reached, rather than after
43. Forward planning on a global level to allow for improved information in terms of prevention, thus providing a window of optimism for future generations
44. Immediate increase in Research Funding (Alzheimer’s UK research: £11 per sufferer, compared with £289 for every cancer patient according to the Alzheimer’s Research Trust. Dementia is responsible for 11 per cent of disability in over-60s; cardiovascular disease 5%; cancer 2.4% - acc. to WHO)
45. Consideration given to the impact of unpaid carers on future economies: who will support in the future those who currently work reduced hours/no hours, with correspondingly reduced NI contributions, pensions?
46. Consideration given to the possibility that the Carers of today may be bringing up a generation of future Carers, through no fault of their own
47. Speculate to accumulate: without increased Research Funding, there will be no steps forward in either prevention or cure; but increased Research Funding will result in a massive reduction of human misery and suffering, and a correspondingly massive reduction in the burdens placed on future generations
48. Accreditation Agency staff should be accountable to residents and relatives, not just to government departments.
49. Acknowledgement of and support for people in multiple caring roles
50. Investment of as much funding, and research and as many facilities into the care of the elderly as we currently invest into care of the young


Katie

 

[Nell]

Dear Katie,

If you've already covered this one, I apologise.

All professionals and people employed by professional agencies (medical, social, caring, respite, EVERYTHING) should abide by the rules of the organisation and NOT make up their own interpretations of the rules!

Seems very obvious, but we have all read countless times on TP where Carers have been forced to fight for the rights of their loved one because some so-called "professional" either doesn't know or doesn't understand the rules governing a particular situation.

Thanks for your list - I hope you will have it made into a "sticky" when you get to the 100! Moderators please note!!

 

[foxy]

My own personal priority is to wake every morning, finding something within me to take off my tired and angry head and replace it with a my happy and energic head, ready to face the day even though inside I'm crying.

This is my own priority so maybe it's not quite right for the list.

Foxy

 

[hurell321]

Here

I hope this is not just me but

I would love to see care homes and restbite care were pets can go to. My father goes no where with out his dog so I can not get a weeks rest. He would go mad with out her. he has lost his wife so no dog would be hell for him. I am sure others out there are the same.
yours s