You are all amazing people x

[Rettaere]

Hello Everyone,
I just feel that I have to say a Big Thank You to everyone on here,just finding Tp has helped me so much,I don't have the personal caring part you all have and just found myself in April thrown in to a world of dementia,my aunt was one minute looking after my uncle then next minute in a ch.She has never really questioned it and still thinks she goes shopping and takes care of her bills and everything.You have all helped me in your own ways and I can never repay what you have all done,just by reading posts I have found out more and found ways to make my aunts life better.She is now close to me in a ch and has changed so much in 2 weeks,can walk unaided,is joining in with activities,singing dancing and is mixing with people where she used to just sit at dining room table staring out of window in other ch.I have learnt more from you amazing people than I have learnt from all the medical stuff on dementia so just had to thank you all from the bottom of my heart.You are all one in a million..Big Hugs and Kisses Retta Xxx

 

[CollegeGirl]

Well that has me filling up! I've no idea whether I have personally helped you, but I agree with everything you say about TP.

It's wonderful to hear of the improved quality of life your auntie is now enjoying; long may it continue!

 

[2197alexandra]

After a diagnosis of dementia in whatever form it presents I think all carers should be directed to TP by the medical profession. I have learnt more on tp than anywhere I've been. I would be so lost without this place. Take this morning for example. Dad is still waiting for his new salt assessment but I can't wait any longer cause dad is now not drinking in fear of choking. So I spent the morning going through old threads and ended up at the chemist buying some artificial thickener. Guess what I have just managed to syringe 100ml of juice into dad without him choking. I shall wait a little and try some more. Thanks tp where else could I of turned for help at 8 am on a Saturday morning.

 

[Rettaere]

Well that has me filling up! I've no idea whether I have personally helped you, but I agree with everything you say about TP.

It's wonderful to hear of the improved quality of life your auntie is now enjoying; long may it continue!

Hi college girl,
It's reading everyone's thoughts and daily events, I tried numerous sites on dementia and then came across tp,Even just the fact that people care matters,it has helped and I love you all x

 

[Rettaere]

After a diagnosis of dementia in whatever form it presents I think all carers should be directed to TP by the medical profession. I have learnt more on tp than anywhere I've been. I would be so lost without this place. Take this morning for example. Dad is still waiting for his new salt assessment but I can't wait any longer cause dad is now not drinking in fear of choking. So I spent the morning going through old threads and ended up at the chemist buying some artificial thickener. Guess what I have just managed to syringe 100ml of juice into dad without him choking. I shall wait a little and try some more. Thanks tp where else could I of turned for help at 8 am on a Saturday morning.

Alexandra,that is why I am so thankful for Tp,I bought my aunt a talking watch and it has helped so much,when I was giving up getting her moved people on here helped me see that I should not give in and now she is so happy.Its people you don't know but they all feel like family.Hugs and hope your dad is ok.x

 

[SugarRay]

I don't post often but I read daily. Your problems are usually my problems. Your experiences help me in mine. Thank you TP.

SR

 

[Rettaere]

I don't post often but I read daily. Your problems are usually my problems. Your experiences help me in mine. Thank you TP.

SR

Hi SugarRay,that's exactly what I mean..people are all amazing here.hugs x

 

[Emomam]

I've only just discovered tp in the last two weeks. You were all there when I was very low having looked after mum for over fours years and having to make the decision that it was time for her to go in a care home.

Hopefully I will be able to help other carers overcome problems.


Sent from my iPhone using Talking Point

 

[blandford516]

I just want to say Tp has helped me and many others try to understand various issues with dementia ,you also listened to my rants over my 'invisible siblings' and the pure absolute heartache watching a loved one slowly deteriorate . You are all amazing people . Thank you .

Ps I will probably rant a few more times before it is over !!

 

[jan.s]

I am glad you've found TP useful. I remember when I first found it, the relief of knowing that I wasn't alone in coping with the needs of my husband.

After diagnosis, we both felt so alone and frightened. The consultant was a lovely man, but we had no help. It was almost like, "yes, you have vas. dem. now go away and come back in 6 months". I tried to make contact with the local branch of Alz Soc, but they didn't return my calls.

Then, after a couple of years of struggle, I found TP. An oasis amongst the turmoil. All those people with so much knowledge and experience, knowing how I felt. The support I have had is unmeasurable. And best of all, no judgements.

 

[gringo]

“You are all amazing people”
Not all of us are! I’m afraid I’m not! I struggle, I’m angry and bitter. I am this way because I see a profound ignorance of dementia outside this forum, and no worth-while attempt being made to improve the situation. It’s always too little too late, if it arrives at all. Band-aids on gaping wounds. See how the NHS treats people with dementia. If the professionals can’t get it right, what hope is there?
If the general public think of dementia at all, they tend to the view that it’s a rather loveable kind of forgetfulness. Unfortunately, I know this from personal experience. That is exactly what i thought before my wife succumbed. No-one in the medical sphere offered any explanations, help or advice at all. I was left to get on with it. Only the knowledge I acquired here on TP. saved my wife from my dangerous ministrations based on complete and utter ignorance. That situation hasn’t changed, there’s still no professional help offered.
I am more than grateful for those TP. members who really are amazing and saved me from falling into the abyss.
I’m afraid I use TP. mainly as an escape valve when the anger and bitterness get too much, as this post demonstrates.

 

[halojones]

TP has given me calm and reason when I have been angry and upset..TP has given me advise, and an understanding of what lies ahead on this bumpy road we are all travelling....TP has given me friendship and laughter, when I have been lonely and sad....Such lovely, lovely people xxx

 

[Sweet]

TP has helped me to cope when I've felt despairing. I absolutely rely on it
Thank you to everyone.
X

 

[Lindy50]

I am glad you've found TP useful. I remember when I first found it, the relief of knowing that I wasn't alone in coping with the needs of my husband.

After diagnosis, we both felt so alone and frightened. The consultant was a lovely man, but we had no help. It was almost like, "yes, you have vas. dem. now go away and come back in 6 months". I tried to make contact with the local branch of Alz Soc, but they didn't return my calls.

Then, after a couple of years of struggle, I found TP. An oasis amongst the turmoil. All those people with so much knowledge and experience, knowing how I felt. The support I have had is unmeasurable. And best of all, no judgements.

Jan, I have just had a similar experience at the memory clinic. Told that mum has vascular dementia, 'is doing well for her age' (whatever that means) and they will keep the case open 'because of the possibility of catastrophic events'.

This is okay for mum, but leaves me feeling that the sword of Damocles is hanging over us. And the the next appointment is in a year's time!!

I'm sorry you felt abandoned. It seems that little has changed.......

All the best

Lindy xx

 

[Rettaere]

And this is why I have said a BIG THANK YOU..The people who thought of this are marvellous because no matter if you want to rant,vent anger,get advice or just browse it is helping in a way no medical or people who have had years training about dementia can! It's because people here are caring and sharing life..It is such a fantastic find.Every person who is dealing with dementia in any shape or form should be advised to come on here as you are all wonderful people x

 

[Rettaere]

“You are all amazing people”
Not all of us are! I’m afraid I’m not! I struggle, I’m angry and bitter. I am this way because I see a profound ignorance of dementia outside this forum, and no worth-while attempt being made to improve the situation. It’s always too little too late, if it arrives at all. Band-aids on gaping wounds. See how the NHS treats people with dementia. If the professionals can’t get it right, what hope is there?
If the general public think of dementia at all, they tend to the view that it’s a rather loveable kind of forgetfulness. Unfortunately, I know this from personal experience. That is exactly what i thought before my wife succumbed. No-one in the medical sphere offered any explanations, help or advice at all. I was left to get on with it. Only the knowledge I acquired here on TP. saved my wife from my dangerous ministrations based on complete and utter ignorance. That situation hasn’t changed, there’s still no professional help offered.
I am more than grateful for those TP. members who really are amazing and saved me from falling into the abyss.
I’m afraid I use TP. mainly as an escape valve when the anger and bitterness get too much, as this post demonstrates.

But thing is at least you can and no one will judge you and a lot will agree with you and this is why every person is special here.I agree and it's so hard on people who care so deeply and watch people suffer and feel they can't help in anyway but just typing how you feel gets you through the day and ready for next one...Hugs xxx

 

[Sue J]

Jan, I have just had a similar experience at the memory clinic. Told that mum has vascular dementia, 'is doing well for her age' (whatever that means) and they will keep the case open 'because of the possibility of catastrophic events'.

This is okay for mum, but leaves me feeling that the sword of Damocles is hanging over us. And the the next appointment is in a year's time!!

I'm sorry you felt abandoned. It seems that little has changed.......

All the best

Lindy xx

Dear Lindy

Am so sorry to read the above, and thank the Lord for TP. I really ask myself what is the function of medics and a social care system that waits for 'catastrophic' events to occur and doesn't deliver any hope that an improvement can be made for the lives of sufferers and carers. I know the good ones are fighting to do their very best, but appointment in a year's time, so they can update their records and say the same thing and they wonder why I as someone in my early 50s had/have no desire nor inclination to attend a 'Memory Clinic'? - that's nothing to do with dementia symptoms! or that you should leave feeling like the 'sword of Damocles' is suspended above you.

Hold on in there
love
Suexx

 

[Spamar]

But anyone with TIAs or heart trouble or anything similar lives with the thought that anything can happen at any time. My own mother, who had survived two strokes, was killed by the next one. Her older sister was staying, they walked up to the postbox and mum had her final stroke. She was 64. I felt really upset when I got to the same age, even though I've had no previous strokes.
OH has vas dem as well as Alzheimer's. I live with the fact that he could go at any time, when one of his TIAs becomes a major stroke.
It's difficult.

 

[Lindy50]

But anyone with TIAs or heart trouble or anything similar lives with the thought that anything can happen at any time. My own mother, who had survived two strokes, was killed by the next one. Her older sister was staying, they walked up to the postbox and mum had her final stroke. She was 64. I felt really upset when I got to the same age, even though I've had no previous strokes.
OH has vas dem as well as Alzheimer's. I live with the fact that he could go at any time, when one of his TIAs becomes a major stroke.
It's difficult.

I agree, spamar, none of knows what the future holds. Both OH and I have experience of living with the kind of conditions you mention, too...

I just felt it was extremely unhelpful to have this pointed out by the doctor, and then be told to come back in a year, unless of course anything catastrophic does happen.....

I am sorry to hear about your mum and your OH. Wishing you all the best

Lindy xx

 

[Spamar]

Oh, she died years ago. More than half my lifetime, which is scary.
I think these days so many people are diagnosed - or not!- and left to sort it out themselves. OH was diagnosed about 7 years ago with someone from Alzheimer's society waiting outside the doors to help us all the way. It doesn't happen these days, though I have heard rumours that something similar is going to be implemented by our local gp surgery..
And then there's the rest of us, who still have to care although we have major health problems ourselves. To my mind not enough is done for us. I got an enhanced Carers budget, but am spending so much more on OHs care now. And, of course, if you are self funding........
OH will have run out if money before he even goes into care at this rate!

Sorry, let a rant go on!