What help do you need?

[Girlthing]

I'm a carer for my Mum who has vascular dementia. The challenging situation has so moved me, that I want to do something to help others. I'm part of a large church (900+) and there are so many charities set up there to help others - youth, homeless, single mums, disabled, destitute etc - and I feel strongly about setting a charity up to help the elderly, especially in relation to dementia.

I see a real need to just be there for a person - not in a medical sense, but to just be there to love on the person, help them with simple things (attend appointments, make lunch, housework etc) as so many desperately want to stay in their own homes but family (like myself) can't always be there.

I know that there are agencies out there that you can pay for this type of thing, but for me it's all about just caring for people because you care, not because you are paid to care. I know through a charity that you will get a better 'calibre' of carers - they want to do it, not have to.

My Mum is fortunate in that she has a husband and family that do the very best for her, but what about those who have no one, or family far away? I can't stand the thought of older people struggling alone, or relatives stressing about family.

So, what would help you? And where would you look for that care? It would be free.

I'm asking this because I can make this happen. I've seen other charities in my church become so successful that the founder has been awarded an OBE - not something I chase but an indication of how this will work.

Thanks

 

[Katrine]

The Alzheimer's Society has a volunteer network, including befrienders / support workers: http://www.alzheimers.org.uk/volunteer Also, Age UK: http://www.alzheimers.org.uk/volunteer

 

[Girlthing]

I am aware of this but unfortunately as I have found in my local area, there is either nothing available or very little.

The help that I want to offer is akin to the carers help that so may pay for, yet which is unfortunately substandard.

I've learnt that you can never have too much help in this horrible situation

 

[Noorza]

I am not sure to be honest but as you would be going into the homes of vulnerable people, people who can often make false accusations due to confabulation, I've done all kinds from giving the wrong kind of soup to make her ill to contaminating the water.

I totally admire your passion and determination but speaking as a carer who has been on the wrong side of all kinds of false accusations from someone who loves me. My opinion for what it's worth is to go through a recognised agency (of course I'd recommend the AS other charities are available ;0) for your own protection.

This way you'll be safe but you'll be giving and helping.

 

[creativesarah]

have you thought of becoming a dementia champion I am going on a training course in 10 days time
what about becoming a befriender for the Alz Soc ?
Just a couple of ideas
Glad your church is so activly involved with the community

Sarah

 

[Girlthing]

In my passion I think I've rushed a little with regards to exactly what I'm hoping to achieve!

The tag line for the service I want to provide would be 'caring for the carer's'. My desire to do this is based upon the stress and complete devastation that I have witnessed with my Dad, and the terrible way in which my Mum's dementia has affected the family as a whole.

The care I want to provide is less for the sufferer (often in their own 'happy' world), and more for the carer. There has been no help for my Dad outside of the family, despite us knocking on many of the established doors (AS etc). I dread to think how he would have coped without me, and sadly there are many elderly husbands and wives out there doing just that. In fact I already visit one elderly couple who are in a real mess despite having had the 'professionals' in - they haven't even been given incontinence advice and yet the husband has said that he is up approx 19 times in the night to care for his wife's toilet needs. He doesn't have the emotional strength right now to push for the right care and information. I like to think that I provide a listening and proactive ear to him which will ultimately improve his life. This is what I want to do with others.

I understand the need to be credible having set up successful charities in the past. Hey, the Alzeimers Society started off somewhere!

Thanks for your advice

 

[Twoode]

Gap in the caring market

I work full time and my mums lives with me she has mild dementia. My husband works and my sons at uni. I would like to go out with her when i get home but i can only take her to 'normal' events or out for a coffee. There does not seem to be anything that caters for evenings. Everything is in the daytime. Very frustrating.

 

[Saffie]

I see a real need to just be there for a person - not in a medical sense, but to just be there to love on the person, help them with simple things (attend appointments, make lunch, housework etc) as so many desperately want to stay in their own homes but family (like myself) can't always be there.

I know that there are agencies out there that you can pay for this type of thing, but for me it's all about just caring for people because you care, not because you are paid to care. I know through a charity that you will get a better 'calibre' of carers - they want to do it, not have to.

The care I want to provide is less for the sufferer (often in their own 'happy' world), and more for the carer. There has been no help for my Dad outside of the family, despite us knocking on many of the established doors (AS etc). I dread to think how he would have coped without me, and sadly there are many elderly husbands and wives out there doing just that.

I don't doubt your good intentions but I am a bit confused because your posts seem to contradict each other. First is about helping the sufferer but the second is about not helping the sufferer but the carer.

In both cases I think you would have to be sure about what exactly you are prepared to do. I think Sarah's suggestion of becoming a Dementia champion or a befriender would be a good place to start. Good luck.

 

[Girlthing]

Both!

I guess both! Read my initial post - I'm asking for help in what help is needed out there....

I know what would help my Dad - someone to help him with the minefield of what he is entitled to etc and someone who makes his wife happy.

I'm in the very very early planning stages!

 

[Sue J]

Well sometimes I need help in the form of a cup of tea! Getting someone to realise that without having to go through a million hoops would be a great help.

With the total change and overhaul of a care & NHS system that we have known for decades means that noone, including those in these systems seem to know what is available to people nor how you go about getting help and support. GP surgeries do not seem to have link ups or know where to refer their patients to. I have my own symptoms and getting any diagnosis without any active help or support is a battle that often feels too much. I also care for another older undiagnosed sufferer. I used to work as a nurse and have cared professionally and personally but now, with my own symptoms don't know where to start. Sufferers are not always in their own 'happy' worlds - I wish.

I welcome your wanting to help and think that GP practices are a good place to start - how many people show signs of dementia, do not get diagnosed but are left to muddle along. A link is needed from GP to other available services that will provide help and not just say no you don't need it - not because they don't but because dementia needs are not properly understood.

Sorry I feel I am waffling, my expression is not as it was - please keep this site informed of what you set up.
Best wishes to you
Sue

 

[jenniferpa]

In case anyone is confused - I've merged the two threads into one.

 

[Girlthing]

Well sometimes I need help in the form of a cup of tea! Getting someone to realise that without having to go through a million hoops would be a great help.

With the total change and overhaul of a care & NHS system that we have known for decades means that noone, including those in these systems seem to know what is available to people nor how you go about getting help and support. GP surgeries do not seem to have link ups or know where to refer their patients to. I have my own symptoms and getting any diagnosis without any active help or support is a battle that often feels too much. I also care for another older undiagnosed sufferer. I used to work as a nurse and have cared professionally and personally but now, with my own symptoms don't know where to start. Sufferers are not always in their own 'happy' worlds - I wish.

I welcome your wanting to help and think that GP practices are a good place to start - how many people show signs of dementia, do not get diagnosed but are left to muddle along. A link is needed from GP to other available services that will provide help and not just say no you don't need it - not because they don't but because dementia needs are not properly understood.

Sorry I feel I am waffling, my expression is not as it was - please keep this site informed of what you set up.
Best wishes to you
Sue

Hi Sue

Sadly I have been sidelined to the 'researchers' thread even though I'm in the very real place of caring for my Mum and wanting to help others and simply asking for advice on what other carers need!

Maybe the Alzheimer's Society feel threatened by someone else actually wanting to do something nationwide as opposed to their sporadic service....

All the best to you x

 

[Saffie]

Hi Sue

Sadly I have been sidelined to the 'researchers' thread even though I'm in the very real place of caring for my Mum and wanting to help others and simply asking for advice on what other carers need!

Maybe the Alzheimer's Society feel threatened by someone else actually wanting to do something nationwide as opposed to their sporadic service....

All the best to you x

Hello Girlthing. Please don't feel in any way upset or offended by the fact that your two threads have been merged into one. I feel a bit responsible because I asked on your other thread if it was a copy of this one so probably highlighted the fact that there were two.

The thing is that it is not usual to have two threads with the same title running concurrently as they both show up on the 'Today's Posts' and 'Most Recent Posts' which is where a lot of people, including myself, go to when they come on to TP. Personally, I never take note of the section of the forum in which a post has been started.

I'm absolutely positive that you have not been sidelined in any way and that the Alzheimers Society feels in no way threatened by what you are wanting to do.
In fact, of course, it is only thanks to the Alzheimer's society that we are able to post on Talking Point at all!

 

[Girlthing]

Whilst I do appreciate your comment, I can't help but feel a little crushed. 99% of the posts on this forum are a cry for help, and as I've been reading them for the last two years my heart has been stirred and I've got to this place whereby I want to sacrifice my personal time and financies to help.

All I wanted was a little feedback with regard to what people needed the most - I know what my family need, but wanted a balanced view. I've thought about posting on here for a couple of months and now in my first day have had a negative experience!

Happily it won't stop me. I'm going to help people live better lives with dignity in their old age. Forum politics are not real life.

 

[Sue J]

Girlthing, I am sorry you feel so crushed. The one good thing about symptoms - can't make sense of the politics anymore - but do know about need as you obviously do too. Part of the problem I find is because I can't express my need they don't think I have any - this I think is why identifying what help is needed is a very good place to start, as it is not an easy answer. We need people like you as dementia, doesn't go away, so I'm pleased you wont - love your determination.x

 

[Lilibet1]

I'm a carer for my Mum who has vascular dementia. The challenging situation has so moved me, that I want to do something to help others. I'm part of a large church (900+) and there are so many charities set up there to help others - youth, homeless, single mums, disabled, destitute etc - and I feel strongly about setting a charity up to help the elderly, especially in relation to dementia.

I see a real need to just be there for a person - not in a medical sense, but to just be there to love on the person, help them with simple things (attend appointments, make lunch, housework etc) as so many desperately want to stay in their own homes but family (like myself) can't always be there.

I know that there are agencies out there that you can pay for this type of thing, but for me it's all about just caring for people because you care, not because you are paid to care. I know through a charity that you will get a better 'calibre' of carers - they want to do it, not have to.

My Mum is fortunate in that she has a husband and family that do the very best for her, but what about those who have no one, or family far away? I can't stand the thought of older people struggling alone, or relatives stressing about family.

So, what would help you? And where would you look for that care? It would be free.

I'm asking this because I can make this happen. I've seen other charities in my church become so successful that the founder has been awarded an OBE - not something I chase but an indication of how this will work.

Thanks

Well i wish you could pop round here. I could really with some help especially as my OH seems to have gone "completely bonkers" just lately!!!!

 

[Girlthing]

Well i wish you could pop round here. I could really with some help especially as my OH seems to have gone "completely bonkers" just lately!!!!

Lol! I wish I could too! But in all seriousness - this is my vision for the future. Hang in there xx

 

[Girlthing]

Thank you Sue J

Thank you Sue J - I'm fiercely determined and that's what's kept me going both through cancer and dementia.

Keep on keeping on x

 

[Sue J]

Thank you Sue J - I'm fiercely determined and that's what's kept me going both through cancer and dementia.

Keep on keeping on x

You're a girl after my own heart xx

 

[Saffie]

Whilst I do appreciate your comment, I can't help but feel a little crushed. 99% of the posts on this forum are a cry for help, and as I've been reading them for the last two years my heart has been stirred and I've got to this place whereby I want to sacrifice my personal time and financies to help.

All I wanted was a little feedback with regard to what people needed the most - I know what my family need, but wanted a balanced view. I've thought about posting on here for a couple of months and now in my first day have had a negative experience!

Happily it won't stop me. I'm going to help people live better lives with dignity in their old age. Forum politics are not real life.

I really don't think you should feel crushed at all simply because your duplicate threads have been amalgamated into one. They would happen for any duplicate identical threads. Honestly, one thread is far more effective in getting your message across as your intention is clearer and feedback is all together which surely cannot be negative.

I applaud what you are wanting to do. I think many people will be wanting different things at different times. As someone has already said, she find evenings a difficult time. I imagine that you will want the help you give to be reasonably local to yourself, so perhaps the place to start would be in the congregation of your Church. There will doubtless be someone there caring for a relative who would appreciate some time out.

There are other places who give advice and help for carers, apart fron the AS, including Carers UK and The Princess Royal Trust for Carers as well as MIND who I know help with a sitting service.