im thinking of leaving this site...im finding it very upsetting! do most people think like this when they join? i think i have been living in a bubble and after speaking with people in my shoes iv hit reality...
im thinking of leaving this site...
- Thread starter vinni1960
- Start date
Hello vinni
Yes it is upsetting, but it is real and at least we can share the upset. I suppose it depends whether or not we want to know.
Most people find this site supportive because they are so isolated in the real world and it`s a relief to find people walking in similar shoes.
If it is too much for you to take, I`m sorry.
Yes it is upsetting, but it is real and at least we can share the upset. I suppose it depends whether or not we want to know.
Most people find this site supportive because they are so isolated in the real world and it`s a relief to find people walking in similar shoes.
If it is too much for you to take, I`m sorry.
Hi Vinni it is hard but I found it my lifeline no 2 people are the same there is not a manual that goes with this horrible desease you just have to take one day at a time and make the most of the good days I found this forum was very helpful it gave me support from others experiences I know it's hard but there is a lot of support here try to pick your posts if one upsets you don't read it go to the tearoom read some fun threads until you feel you can read other threads do think before leaving love larivy
I too find it depressing to read but my life is ruled by Alzheimers and I feel very alone especialy when things are really bad. This site gives me so much that the feeling of being the only one dealing with the latest horror to show it's face is not just being experienced by me. I have also picked up so much information on here regarding care both now and in the future and I feel far more educated to deal with the future.
People are so ready to offer advice and sympathy. Proffessionals don't give the sympathy and the understanding which as a carer I feel is as necessary as the medical side of it. So yes, there is a lot of depressing things discussed on here but there is no getting away from this with this horrendous disease dementia, which ever form it takes.
Jay x
People are so ready to offer advice and sympathy. Proffessionals don't give the sympathy and the understanding which as a carer I feel is as necessary as the medical side of it. So yes, there is a lot of depressing things discussed on here but there is no getting away from this with this horrendous disease dementia, which ever form it takes.
Jay x
Yes Vinni it can be distressing but it can also be a great source of comfort and support.
> Who else understands the needs of carers (and in some cases carees who are still
able to post) than those who are living it? The people who post here
> Where else can we go to really rant off when we have had a bad day and you wont
be judged - here?
I could go on but please don't leave - mutual support is a wonderful thing and I personally don't know what I would do without it
> Who else understands the needs of carers (and in some cases carees who are still
able to post) than those who are living it? The people who post here
> Where else can we go to really rant off when we have had a bad day and you wont
be judged - here?
I could go on but please don't leave - mutual support is a wonderful thing and I personally don't know what I would do without it
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When I feel a bit overwhelmed by what I read on TP I have to remind myself that 'all human life is here'.
Every possible manifestation of family circumstances, illnesses, disabilities and dementia symptoms. Experiences of hospitals, CHs and NHs from the wonderful to the frighteningly terrible. Medical and social care professionals ditto. People who haven't got 2 brass farthings to rub together, others with money and property but whose financial affairs have gone to h*** in a handcart. People with strong and loving family relationships, people with relatives you wouldn't wish on your worst enemy.
In short, my life is only a tiny aspect of this great diversity of experience. I can learn from what other people tell me but I don't have to live all their thousands of lives at once. And I do not have to be an expert in every possible dementia scenario.
Live each day as it comes - sufficient unto the day is the evil thereof - tomorrow is another day.
Every possible manifestation of family circumstances, illnesses, disabilities and dementia symptoms. Experiences of hospitals, CHs and NHs from the wonderful to the frighteningly terrible. Medical and social care professionals ditto. People who haven't got 2 brass farthings to rub together, others with money and property but whose financial affairs have gone to h*** in a handcart. People with strong and loving family relationships, people with relatives you wouldn't wish on your worst enemy.
In short, my life is only a tiny aspect of this great diversity of experience. I can learn from what other people tell me but I don't have to live all their thousands of lives at once. And I do not have to be an expert in every possible dementia scenario.
Live each day as it comes - sufficient unto the day is the evil thereof - tomorrow is another day.
Thank you for all your kind messages....i think im just having particularly bad day today! feeling very angry at the world and very 'why me' which i can imagine everyone on here has days like! very sad face
very sad face
Hi Vinnie,
We all have these days, I sometimes get three of them all in one day. No one here will judge you so if you have a bad day and want to rant and rage, do it and when you have a good day let us know about that too. I have posted on here things that I would not talk to my daughter about because of the very personal nature of her Father's behaviour but I know members here understand and can advise on. I don't think there is any form of behaviour how ever perverse, that has not been experienced by a member on here. I know I have read of some behaviour that has horrified me but at least should it happen during our journey through dementia then I will not be so upset by it.
Chin up and keep smiling, even if it is through gritted teeth.
Jay x
We all have these days, I sometimes get three of them all in one day.
No one here will judge you so if you have a bad day and want to rant and rage, do it and when you have a good day let us know about that too. I have posted on here things that I would not talk to my daughter about because of the very personal nature of her Father's behaviour but I know members here understand and can advise on. I don't think there is any form of behaviour how ever perverse, that has not been experienced by a member on here. I know I have read of some behaviour that has horrified me but at least should it happen during our journey through dementia then I will not be so upset by it. Chin up and keep smiling, even if it is through gritted teeth.
Jay x
yep, it's depressing, and it SUCKS, much like many other illnesses. I guess eventually we have to all deal with the reality of it all and accept the gravity of the situations we (and our families) are in. And hopefully find some supportive and understanding people to share in what we have to go through.
I am here to try and prepare myself for the things to come, and the cold hard truth is all I want right now. I've had 2 family members go through the alzheimers process so far, and now my mum, so this one, obviously it's going to be up to me to step up and take more action that I've had to with the grandparents.
I don't necessarily find what the doctors are saying of much practical use, because they are saying, yeah, take this medication and that medication, get some hobbies, keep using your brain (to my mum). And obviously that is not the reality of this disease, the odds of fighting it and keeping the mind from being lost in the fog are low. If I'm mentally prepared, I might be able to help and cope better when things go pear shaped.
Hope tomorrow you feel better than you do today.
I am here to try and prepare myself for the things to come, and the cold hard truth is all I want right now. I've had 2 family members go through the alzheimers process so far, and now my mum, so this one, obviously it's going to be up to me to step up and take more action that I've had to with the grandparents.
I don't necessarily find what the doctors are saying of much practical use, because they are saying, yeah, take this medication and that medication, get some hobbies, keep using your brain (to my mum). And obviously that is not the reality of this disease, the odds of fighting it and keeping the mind from being lost in the fog are low. If I'm mentally prepared, I might be able to help and cope better when things go pear shaped.
Hope tomorrow you feel better than you do today.
Sometimes what I read here makes me cry but I'll be staying put because:
- No matter how sorry I'm feeling for myself there's always somebody far worse off and I'll meet them as soon as I log on here
- I can get practical advice when I'm struggling
- I can have a rant about my BIL without upsetting OH (or BIL's wife)
- Finally, just maybe I can contribute to helping someone else who's having a bad day
Hi Vinni
I come and go from this site. I used to feel guilty because sometimes I would not come here for months..........therefore I am not helping anyone either. And then I'd come back when I need help...........and I'd respond to some posts too. So I would feel guilty that I used it just when I needed it.
BUT, that's what the purpose is I think of this site....to use it in a way that helps you.
the only person judging me was me!
There are so many people here, there's always someone to listen and to help.
Just come here when you need it and don't when you don't. But please remember there's always someone here if you do need it.
jackmac
I come and go from this site. I used to feel guilty because sometimes I would not come here for months..........therefore I am not helping anyone either. And then I'd come back when I need help...........and I'd respond to some posts too. So I would feel guilty that I used it just when I needed it.
BUT, that's what the purpose is I think of this site....to use it in a way that helps you.
the only person judging me was me!
There are so many people here, there's always someone to listen and to help.
Just come here when you need it and don't when you don't. But please remember there's always someone here if you do need it.
jackmac
Hello Vinni
I think the quote above sums it up for me. You don't have to leave, you can take a break whenever you want to, TP will be here if you need it in the future.
You might find it easier to ignore some threads, if they are too upsetting. The tea room for instance can be more lighthearted than the support forum. Please come and go as you wish.
Very best wishes to you.
Vinni, I think I know how you feel. There are times I want to escape from here because of what I can only describe as the 'merry-go-round' of the repeated questions for the same problems.
Also as someone who's been through the whole journey I ask myself; it's over what am I doing here? The answer is always the same; I still read of the total lack of understanding of the illness by 'professional' people. Most of all the stress and frustration visited on those looking after a loved one that results in them becoming ill. That was the main reason I chose to go it alone. It was better for both our healths.
Hang in there, only through experience will you learn and become stronger.
Also as someone who's been through the whole journey I ask myself; it's over what am I doing here? The answer is always the same; I still read of the total lack of understanding of the illness by 'professional' people. Most of all the stress and frustration visited on those looking after a loved one that results in them becoming ill. That was the main reason I chose to go it alone. It was better for both our healths.
Hang in there, only through experience will you learn and become stronger.
yes it is VERY upsetting but I found when I was very upset and trapped and unable to see a way out - it gave me
the realisation that I was not the only one
practical advice
full-blown opinions rather than cautious mumbling or weasel words
a sense that yes it is grim but grim can be normal
the realisation that I was not the only one
practical advice
full-blown opinions rather than cautious mumbling or weasel words
a sense that yes it is grim but grim can be normal
999 gets you police, ambulance and fire.
TALKING POINT as far as I am concerned is like AN ADDITIONAL EMERGENCY SERVICE.
MOST IMPORTANTLY, I think I understand how you might feel.
Must admit, that if the 3 "normal" emergency services were to write and publish everything they see and do it could possibly appear as the worlds worst horror story.
I felt like you initially, but when I put the whole situation into perspective, MY STORY is so MINOR when you look at the WHOLE WORLD BIG PICTURE.
In summary, I try to cope. TP is far and away the best COPING TOOL in my armoury
TALKING POINT as far as I am concerned is like AN ADDITIONAL EMERGENCY SERVICE.
MOST IMPORTANTLY, I think I understand how you might feel.
Must admit, that if the 3 "normal" emergency services were to write and publish everything they see and do it could possibly appear as the worlds worst horror story.
I felt like you initially, but when I put the whole situation into perspective, MY STORY is so MINOR when you look at the WHOLE WORLD BIG PICTURE.
In summary, I try to cope. TP is far and away the best COPING TOOL in my armoury
Hi Vinni
I know what you mean! It can be depressing and I also think I spend far too much time on here ranting - when I read it back after I've posted it I feel embarrassed. Didn't realise I had so much stored inside my head and when I see what others are going through, I feel I shouldn't whinge so much and maybe shouldn't stay.
That said, I agree with what everyone else has said here. I've learned a lot and benefitted from the understanding and support, and I hope I can pass some of that on too. So as long as nobody tells me to shove off, I reckon I'll hang around. XX
I know what you mean! It can be depressing and I also think I spend far too much time on here ranting - when I read it back after I've posted it I feel embarrassed.
Didn't realise I had so much stored inside my head and when I see what others are going through, I feel I shouldn't whinge so much and maybe shouldn't stay. That said, I agree with what everyone else has said here. I've learned a lot and benefitted from the understanding and support, and I hope I can pass some of that on too. So as long as nobody tells me to shove off, I reckon I'll hang around.
XX
I don't know how I would have coped without this site.
So I would say that I don't have a choice - I need it. I've also found some lovely friends here.
So I would say that I don't have a choice - I need it. I've also found some lovely friends here.
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Pleasedont feel overwhelmed and scared....
We were all new here like you, all fumbling in the dark. No-one here will judge you....it really is a lifeline when you need someone to back you up, give you some sympathy or tell you something absurdly silly that makes you laugh.
You dont have to visit all the time, just drop in - like you would on a friend....
I have managed to pick up my life again and would not have been able to do so without the help of people here....
Yes, some things you read are very upsetting but this is the real deal.....dementia dosnt have a good prognosis....personally, id rather be prepared, even If I do get upset along the way....
We were all new here like you, all fumbling in the dark. No-one here will judge you....it really is a lifeline when you need someone to back you up, give you some sympathy or tell you something absurdly silly that makes you laugh.
You dont have to visit all the time, just drop in - like you would on a friend....
I have managed to pick up my life again and would not have been able to do so without the help of people here....
Yes, some things you read are very upsetting but this is the real deal.....dementia dosnt have a good prognosis....personally, id rather be prepared, even If I do get upset along the way....
Hi Vinni,
As you'll have gathered, most people on here can relate to your feelings. I find that one of the most important things to remember is the absolute fact that everyone is different. Bearing this in mind, I tend to ignore any post that talks about what 'they' do/say/feel/can't do or how you must treat 'them'. I also take heart from the fact that a leading expert told me 'You're the expert as far as your wife is concerned'. If you think about it, you see a whole lot more of the person you care for than anyone else, you know a lot more than anyone else about what they can and can't do, what works best with them - and an awful lot about their past history, experiences, family relationships. So trust your own instincts.
That's not to say that you can't get tremendous help and advice on this site. You can, which is why it such a wonderful resource. You just have to exercise your critical judgement.
All the best to you.
As you'll have gathered, most people on here can relate to your feelings. I find that one of the most important things to remember is the absolute fact that everyone is different. Bearing this in mind, I tend to ignore any post that talks about what 'they' do/say/feel/can't do or how you must treat 'them'. I also take heart from the fact that a leading expert told me 'You're the expert as far as your wife is concerned'. If you think about it, you see a whole lot more of the person you care for than anyone else, you know a lot more than anyone else about what they can and can't do, what works best with them - and an awful lot about their past history, experiences, family relationships. So trust your own instincts.
That's not to say that you can't get tremendous help and advice on this site. You can, which is why it such a wonderful resource. You just have to exercise your critical judgement.
All the best to you.
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