We're short, we're sharp but we're out there

[Bunpoots]

I wonder if future generations will look back in horror at the way PWD and their families are left to fend for themselves?

No-one with any other disease is given the diagnosis and told there is no treatment and no hope of cure and that many lives will be severely affected by one person's illness. Some carer's will even die as a direct result.

Tough!! Get on with it!

 

[kindred]

@SKD that is so true and so common we often forget it in making our argument. In my case I am carer for my husband and also with responsibilities for his 82 year old handicapped sister. I didn't marry her or even volunteer but like others I stepped in simply because there was no one else. Many others on here look after two parents or a spouse and child who both need carers etc. This has got to be the welfare issue of the age.

YES, surely. it is outrageous. There are so many ways to silence us, keep us afraid of raising our heads above the parapet, and anyway we are usually too tired and dispirited to do so. You are right, it has to be the welfare issue of the age. My goodness, how much longer must we suffer in silence as we do.

 

[kindred]

I wonder if future generations will look back in horror at the way PWD and their families are left to fend for themselves?

No-one with any other disease is given the diagnosis and told there is no treatment and no hope of cure and that many lives will be severely affected by one person's illness. Some carer's will even die as a direct result.

Tough!! Get on with it!

Yes, carers are a high suicide risk. Interestingly, the Americans are much more upfront about carer suffering, that the condition will exact a terrible physical and mental toll on carers. I don't think there's much more direct help there either, but neither is there this silencing blanket. Thank you.

 

[Rosie4u]

That worries me - if my OH does need a care home , without his income I’m not sure I can afford to live in our house but if I sell it then I can’t afford another with my half - Do we get stuck !

 

[lemonjuice]

That worries me - if my OH does need a care home , without his income I’m not sure I can afford to live in our house but if I sell it then I can’t afford another with my half - Do we get stuck !

I'm sure that's what many people fear and has been the experience of others. It's definitely more expensive to keep up a property with just one income and more expensive generally to cook for 'just one!' I think.

Which is why I certainly try to make people aware, not just of the emotional repercussions of a diagnosis of dementia, but of financial implications.

 

[margherita]

Kindred, your letter is perfect.
Here in Italy our situation is even worse.
Nobody seems to care for us. They seem to be convinced it is obvious we should take care of parents, parents-in-law, husbands or wives ..
The "good" side is that care homes are much less expensive and paid carers cost less , too.

 

[john1939]

OK, any newsagent will have it, but here is what I said:

Care in the Home

Sir, Rachel Sylvester's proposals for healthcare are to be applauded. One thing though is never raised. Yes, patients are on the whole better cared for at home. But this ignores the plight of those caring for loved ones with dementia. Sharing a home with a family member with severe dementia is like sharing a cell with a person who is unpredictable and often violent. Ask the police and ambulance services how often they are called out. Carers are treated as of secondary or no importance and their suffering is immense. I know - I was the sole carer for my husband, who has dementia and is now in a nursing home, for four years.

Thank You, right to the point.

 

[Life]

The Times has said it welcomes letters about situations similar to the one I describe - sole carer for OH and immense suffering. 100 - 150 words, not long, long enough to make a point about predicament of carers. Please mention Rachel Sylvester's article on health and social care (just say with reference to ...and tell your story). E mail letters@thetimes.co.uk and include your name and address and phone, none of which will be published, just a goodwill thing.
This is such an unprecedented opportunity for us carers to have an international voice.

Great letter. I'd like to do this, but I need to work out how to do it on only 100 words though!

 

[Krug 22]

Brilliant letter - well done. I too worry that if things get so bad and my husband goes int o a care home, then I would struggle to keep my home and my cats. I am under state pension age so could in theory work. But the last 7 years have taken the toll on my confidence and even doing a computer course is not an easy option as would not know what I was coming home too. I certainly understand why the suicide rate is so high in carers. Also well done for mentioning the aggression - so many people have idealised vision of people with dementia being easy to handle when in many cases, the opposite is true,

 

[kindred]

Great letter. I'd like to do this, but I need to work out how to do it on only 100 words though!

Thank you!

 

[kindred]

That worries me - if my OH does need a care home , without his income I’m not sure I can afford to live in our house but if I sell it then I can’t afford another with my half - Do we get stuck !

By income, do you mean pension? Would you get half of it, though?

 

[kindred]

Kindred, your letter is perfect.
Here in Italy our situation is even worse.
Nobody seems to care for us. They seem to be convinced it is obvious we should take care of parents, parents-in-law, husbands or wives ..
The "good" side is that care homes are much less expensive and paid carers cost less , too.

Thank you so much. Apart from the cheaper care homes, this is a heavy burden. I am so sorry. it is almost a form of slavery. So good to hear from you. THank you.

 

[kindred]

Brilliant letter - well done. I too worry that if things get so bad and my husband goes int o a care home, then I would struggle to keep my home and my cats. I am under state pension age so could in theory work. But the last 7 years have taken the toll on my confidence and even doing a computer course is not an easy option as would not know what I was coming home too. I certainly understand why the suicide rate is so high in carers. Also well done for mentioning the aggression - so many people have idealised vision of people with dementia being easy to handle when in many cases, the opposite is true,

OH my dear I understand. OF course it takes an enormous toll on your confidence. Every time I came home from being away there was some new trauma, some new destruction of the house, another awful mess to clear up, a flood, something broken,a something ruined. IF I was only out for half an hour. I had no confidence left and my courage was low, gone really. ENding my life seemed the only option but how to do it so that it was picked up quickly for the sake of my OH? In the end, my OH had an accident and the hospital said I had to send him to a nursing home as I could not manage, I was broken physically and mentally.
He is happy in the home, I am there every day. This is why I wrote to the paper and will try to go on raising awareness of our plight, I must do something. Thank you so much for posting.

 

[Rosie4u]

By income, do you mean pension? Would you get half of it, though?

Yes he has work pension plus OAP where I have work pension only .Not sure how it works - need to put it on the to do list

 

[kindred]

Yes he has work pension plus OAP where I have work pension only .Not sure how it works - need to put it on the to do list

It may not be as bad as you think, sweetheart. Lovely to hear from you. Gx

 

[Norfolk Cherry]

Thank you @kindred for taking the time to write such a great letter. Your case for the carers is very well argued.

 

[kindred]

Thank you @kindred for taking the time to write such a great letter. Your case for the carers is very well argued.

thank you so much. We have been silenced for too long!

 

[kindred]

@kindred it turned out my husband randomly grabbed a free Times at the airport yesterday so I was thrilled to be able to see your letter in print after all! Attached here. I will ask Uncle's wife to compose a letter when she has a minute, as marionq said, her financial situation now he is in the NH is really a scandal, with a child still at home. Rose x

wow, thank you SO much. Thank you. I am so glad!

 

[cuppatea]

Brilliant letter well done! I do hope that some of the eloquent replies on here will find their way into letters and follow your example.

 

[kindred]

Brilliant letter well done! I do hope that some of the eloquent replies on here will find their way into letters and follow your example.

Thank you so much. It's a start, and a breakthrough to have such a direct and non sentimental letter published. It's time to tell it like it is. Thank YOU.