on duty 24 hours a day!
- Thread starter elaine n
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I don`t think there is any choice Elaine, except to do the best we can with what we have. There is no point subjecting an already very poorly person to tests and procedures which might even be detrimental to the dementia.
I do hope you are getting some sleep. x
I do hope you are getting some sleep. x
Hi Sylvia
the nights are not so bad now, although we're up between 2 and 4 times, mostly i can get Gary back to bed fairly quickly, sometimes I have to change his pyjama trousers because he's forgotten to take them down in the loo and mop the bathroom floor. We have the odd night when he's wandering for about half an hour but compared to what it was like it's manageable now but if it gets worse I will ask for a night sitter - promise!
the nights are not so bad now, although we're up between 2 and 4 times, mostly i can get Gary back to bed fairly quickly, sometimes I have to change his pyjama trousers because he's forgotten to take them down in the loo and mop the bathroom floor. We have the odd night when he's wandering for about half an hour but compared to what it was like it's manageable now but if it gets worse I will ask for a night sitter - promise!
Thanks Karen x
I'm waiting for an OT to arrive - she's late! I was supposed to be having lunch with a friend when Gary's sitter comes at 12 it doesn't look very likely now
I'm waiting for an OT to arrive - she's late!
I was supposed to be having lunch with a friend when Gary's sitter comes at 12 it doesn't look very likely now 
Elaine, hi
I made the same decision about the bowel cancer screening earlier this year, it was just too much to take the samples and hubby was distressed by the thought of it, so we didn't take part either. As you say, what would a positive diagnosis provide except better end of life care, and we can only hope for that anyway.
I hope your OT has arrived and agrees with you about what you need. We have an appointment booked for have to wait 4 weeks to be allocated one, hubby has forgotten how to use the toilet now too and accidents happen especially during the night, although he is very good at letting me know when I'm needed before rather than after the event!
I also hope that you get most of not all of your sitter time, I've got two hours this afternoon too, we do seem to be mirroring our experiences at the moment.
Take good care of yourself, with best wishes from Jo
I made the same decision about the bowel cancer screening earlier this year, it was just too much to take the samples and hubby was distressed by the thought of it, so we didn't take part either. As you say, what would a positive diagnosis provide except better end of life care, and we can only hope for that anyway.
I hope your OT has arrived and agrees with you about what you need. We have an appointment booked for have to wait 4 weeks to be allocated one, hubby has forgotten how to use the toilet now too and accidents happen especially during the night, although he is very good at letting me know when I'm needed before rather than after the event!
I also hope that you get most of not all of your sitter time, I've got two hours this afternoon too, we do seem to be mirroring our experiences at the moment.
Take good care of yourself, with best wishes from Jo
Well!!!! 12 o'clock came and no OT had arrived so when the sitter came I went to lunch How rude not to phone and tell me she wasn't coming though.
I hope you have a good time Jo this afternoon
12 o'clock came and no OT had arrived so when the sitter came I went to lunch How rude not to phone and tell me she wasn't coming though.I hope you have a good time Jo this afternoon
Elaine, hi
Good for you, such rudeness is not acceptable and you did right on not waiting around.
I do hope your lunch was fun and relaxing and your friend and you had fun, it's what respite is about!
I did spend time this afternoon sitting by the canal telephoning to enquire about respite care for hubby, behind his back, but there is no point in talking it through until I know whether it's possible and available, my mum is due for breast cancer surgery at the end of the month and I do want to be there for her. I'll be able to confirm whether or not it's available on Friday and can talk to hubby over the weekend and then confirm at the beginning of next week, oola I feel like a snake in the grass but, well just but.
I hope you have a better night tonight and no accidents, when you contact the OT tomorrow morning I hope you are in the right mood to accept their apology!!
With best wishes from Jo
Good for you, such rudeness is not acceptable and you did right on not waiting around.
I do hope your lunch was fun and relaxing and your friend and you had fun, it's what respite is about!
I did spend time this afternoon sitting by the canal telephoning to enquire about respite care for hubby, behind his back, but there is no point in talking it through until I know whether it's possible and available, my mum is due for breast cancer surgery at the end of the month and I do want to be there for her. I'll be able to confirm whether or not it's available on Friday and can talk to hubby over the weekend and then confirm at the beginning of next week, oola I feel like a snake in the grass but, well just but.
I hope you have a better night tonight and no accidents, when you contact the OT tomorrow morning I hope you are in the right mood to accept their apology!!
With best wishes from Jo
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I know what you mean about secret phone calls Jo! It's almost impossible to do it at home when someone's standing on your shoulder all the time isn't it? I tend to wander about the house when I'm on the phone so that I can get out of ear shot a bit Have you used respite care before? You definitely need to be able to support your mum, as much for you as for her I think - not being able to support our families because we're tied to this damned disease is dreadful
Have you used respite care before? You definitely need to be able to support your mum, as much for you as for her I think - not being able to support our families because we're tied to this damned disease is dreadful
Hi Elaine, just catching up on your thread, and very sorry to read that Gary is declining, and about your difficult decision. I hope you are looking after yourself and getting better nights to sleep through.
Sorry you are having such a miserable time. Love and hugs. x
Sorry you are having such a miserable time. Love and hugs. x
Hi Elaine
I`m glad you went out for lunch and hope you enjoyed it.
Your post took me back to arriving for a GP appointment during a 2 hour sit, bearing in mind it was a 30 minute walk each way.
The receptionist told me there were 7 in front of me. She was then surprised when I burst into tears.
I`m glad you went out for lunch and hope you enjoyed it.
Your post took me back to arriving for a GP appointment during a 2 hour sit, bearing in mind it was a 30 minute walk each way.
The receptionist told me there were 7 in front of me. She was then surprised when I burst into tears.
Two hours sounds like a long time until you try and do something specific with it
I did have a nice time thank you but spend most of the time glancing at my watch and feeling anxious if the meal takes too long to arrive !
I did have a nice time thank you but spend most of the time glancing at my watch and feeling anxious if the meal takes too long to arrive !
Dear Elaine,
I have just read through your entire thread and am so sorry to see what a time of it you have been having. Disturbed nights so sap your energy, don't they, but I am glad to see that they are not quite as bad now as they were a few weeks ago.
But sorry to see, too, that your dear Gary seems to have had a downturn and is able to do so much less than he could. I think it is one of the saddest things in the world, having to come to terms with your husband's losses - and each and every one is a loss of sorts for you as well.
I do hope you manage to get another day at Day Centre for him, or more sitting time. And have you begun to look into the possibility of getting CHC for him? There is an awful lot of information about it on the Net and it takes time to plough through. Do give it some thought, though. (I have forgotten now who it was that suggested this to you.)
Thinking of you and Gary, and sending love,
Nan XXX
I have just read through your entire thread and am so sorry to see what a time of it you have been having. Disturbed nights so sap your energy, don't they, but I am glad to see that they are not quite as bad now as they were a few weeks ago.
But sorry to see, too, that your dear Gary seems to have had a downturn and is able to do so much less than he could. I think it is one of the saddest things in the world, having to come to terms with your husband's losses - and each and every one is a loss of sorts for you as well.
I do hope you manage to get another day at Day Centre for him, or more sitting time. And have you begun to look into the possibility of getting CHC for him? There is an awful lot of information about it on the Net and it takes time to plough through. Do give it some thought, though. (I have forgotten now who it was that suggested this to you.)
Thinking of you and Gary, and sending love,
Nan XXX
Hi Sarah, I can't wait to see my picture!
Hi Nan, I've sort of slipped into this stage now. Mostly I don't let it make me upset but sometimes I have my moments when I feel total despair. Gary's suddenly become very loving and needs to touch me, my hand, shoulder, stroke my hair, it's very poignant really.
The OT came today, we'd got our lines crossed - she had Thursday in her diary, I had Tuesday - no matter it was a good outcome. We've got the bathroom and toilet aids we need and she checked my blue badge application with the council - they'd marked it not eligable! She told them in no uncertain terms that it WAS eligible and was in fact urgent! They're sending it ASAP! So a good result all round, worth waiting for
I still struggle with how far we've come in such a comparitively short time and find myself wondering where we'll be in another year's time but also recognise that there's no mileage in that. I need to live for now I suppose but also need to plan for the future because I tend to be reactive rather than proactive which means I don't get things put in place as soon as we need them but always after I've been struggling. I dare say I'll learn in time
Hi Nan, I've sort of slipped into this stage now. Mostly I don't let it make me upset but sometimes I have my moments when I feel total despair. Gary's suddenly become very loving and needs to touch me, my hand, shoulder, stroke my hair, it's very poignant really.
The OT came today, we'd got our lines crossed - she had Thursday in her diary, I had Tuesday - no matter it was a good outcome. We've got the bathroom and toilet aids we need and she checked my blue badge application with the council - they'd marked it not eligable! She told them in no uncertain terms that it WAS eligible and was in fact urgent!
They're sending it ASAP! So a good result all round, worth waiting for I still struggle with how far we've come in such a comparitively short time and find myself wondering where we'll be in another year's time but also recognise that there's no mileage in that. I need to live for now I suppose but also need to plan for the future because I tend to be reactive rather than proactive which means I don't get things put in place as soon as we need them but always after I've been struggling. I dare say I'll learn in time
Glad your Blue badge is on its way Its made a real difference to me if I'm having a bad day and cant walk in a straight line
I think the photo will take a couple of days as it had to go parcel post, perhaps it was the string!
I think the photo will take a couple of days as it had to go parcel post, perhaps it was the string!
Elaine
Glad the OT has been able to help you and Gary.
I didn't believe that OTs were real, I've been waiting 18months for one to come and assess Tom
Glad also that your nights are more settled.
Love Helen x
Glad the OT has been able to help you and Gary.
I didn't believe that OTs were real, I've been waiting 18months for one to come and assess Tom
Glad also that your nights are more settled.
Love Helen x
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