We're short, we're sharp but we're out there
- Thread starter kindred
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Great letter Kindred, I have only just seen it other half still asleep so stealing some time. Yes the emotional side is so draining, I catch sight of myself in the mirror and try to convince myself that I am still really me after all, under that very tired and strained look I seem to have gained.
On the finance side what about those of us that aren't married, like me, who will have nothing if and when my other half goes into care, as I gave up work early to look after him, which meant no personal income, no pension, just nothing available for me, other than finding a job until the meagre NI. pension kicks in! This dementia has not only taken both of us for now, but has devastated any possible future for myself. It sure makes you want to give up.
Thnaks for the information rose555. I think the common thread that runs through these replies is what I call 'brain space' Its what I need on a daily basis to be me, to think my own thoughts
to let my mind wander. Being constantly on alert 24/7 is damaging and a crazy situation. No job would entail that level of commitment.
You and I are in the same boat - and it's probably called 'Titanic' - no disrespect to the other one! Our Titanic is a huge vessel that also takes us under. You seem to be a little younger than I - but we rent and when he goes into care, I possibly lose my home as well as cannot afford it - already lost my career through this hateful disease.
Yes, I know. Our own futures are taken from us. I know, too, about the tired look in mirror. I used to feel my face was somehow pasted on in strips, most peculiar feeling. Plus the kind of fixed smile I used all the time in the hope people would be nice to me. I was writing
I must endure 100 times every evening to make myself carry on. Surely, surely this carer suffering can't be right, can't just go on like this? Thank you for kind words about letter, I was very pleased they published something so hard-hitting.
Absolutely right. It is traumatic and keeps us in a state of shock. Yes, too about how we need to think our own thoughts to be who we are, keep our identity. The fight is not to let dementia be the only story we have to tell.
Mary Joan, I know, it feels like being in the titanic and going down with it. Our sufferings need a much higher profile. with love, Geraldinex
Hello maryjoan sorry to hear that your plight is similar to mine, seems very unfair to me. I know money isn't everything and Im not bothered about it per say as I do not have expensive tastes and can live relatively cheaply. However, there is a massive difference when the future is scary anyway, but add into the mix that there wiill no security in the event of being left on our own which is inevitable, is a massive stress factor. I do empathise. Sorry Kindred for taking over your thread, you have done us a great service with your letter, just wish I could do more to help our cause.
It was wonderful to read the response letters so kindly posted above. I am so pleased and proud both of you and for you. Having a difficult evening here today so won’t say more, but my thoughts are with everyone. Love to all.
No worries, good to hear from you. Yes, these are huge stress factors. Thank you with all heart, I think we kind of now await the findings of the Government green paper, which as you know, i am so afraid will stress firmly that PWD are best cared for in the home. At least, if we ever do get a chance to make our voices heard, we will have plenty of evidence. There is so little reassurance for us, and my goodness, look what we are doing! Remember that policy reflects finance, I had to remember this when the SW were guilt tripping me something awful. Thank you.
I missed the beginning of the TV news - but came in part way about a feature on carers and the pressures they were under - but it was featuring the Professional Agency carers - it was good nonetheless, but did not highlight our plight as far as I could see..... anyone else see it??
Hi @maryjoan Yes I saw it and it was about Homecare Workers. They are not paid for travel time between visits, not given enough time to spend with clients, feel undervalued etc. I agreed with everything the lady interviewed said. The feature was not about carers of loved ones with Dementia. Wonder if anything is scheduled to show the reality of us carers? Somehow I doubt it.
Thanks Jezzer - I know our carers, who come daily to my OH feel exactly the same. The travelling time is a real issue for them - our postal address is a town about 12 miles from here, and they are expected to do the journey in about 10 mins, along winding country lanes - often behind tractors, cattle etc. I wish they would show something about our lives though - so many of us live totally wretched lives with so many worries - all because we love someone. ..
Oh I do agree. As I've mentioned before, I feel we are the Forgotten Sufferers and there seems to be a total lack of understanding about what we go through. The toll it takes on us is unbearable at times isn't it? Here's hoping for some much needed education about carers of our loved ones.
Thank you all so very much. I wonder if no one (I mean media, I guess) believes the degree of our suffering? Gx
I think neither media, nor the general public, understand the full extent of the impact of caring, unless they have any personal experience.
My mother was the 4th relative to suffer and I thought I had some understanding, but when I started to care for my mother I found a whole new and unexpected dimension to it.
Watching at a distance on an occasional basis is a completely different thing and gives no indication of the reality.People whose relatives die before they reach middle /end stages can often have a far rosier view of how sufferers and carers can still 'live well with dementia'.
People who do not care on a daily basis and live some distance away or can afford to get good care may not be facing the same 'reality' which many on here experience.
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Absolutely, thank you. Our reality is surreal and often ghastly. It is as though we too are thrown away by life and society. I know, all sympathy to you and thank you so much for posting. I wish I knew how to help on a wider scale. I wish I could. GxxI think neither media nor the general public understand the full extent f the impact of caring, unless they have any personal experience.
My mother was the 4th relative to suffer and I thought I had some understanding, but when I started to care for my mother I found a whole new and unexpected dimension to it.
People whose relatives die before they reach middle /end stages can often have a far rosier view of how sufferers and carers can still 'live well with dementia'.
People who do not care on a daily basis and live some distance away or can afford to get good care may not be facing the same 'reality' which many on here experience.
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