Hi Gigi
I know exactly how you feel - this disease has destroyed love and emotion for me too. Fortunately I think you are a better carer than I will ever be - so it is all really sad.
Take care.
Love
Please..if there is a god out there..
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Hi Gigi
I know exactly how you feel - this disease has destroyed love and emotion for me too. Fortunately I think you are a better carer than I will ever be - so it is all really sad.
Take care.
Love
Hello Gigi,
Re the phone call: my mum became quite reluctant to engage in phone calls with anyone except me, because she could not always recall who was on the other end, or even if she did, she would forget what she was in the middle of saying (me too sometimes).
Worse, in her mind, she couldn't remember how to chat about her day because she couldn't recall what her day had consisted of. There was an earlier phase however when she would 'wing it' and say things had happened that hadn't. I'm sure it was to cover her embarrassment at not actually recalling what she had been up to.
Actually I rather envy Eric's telephone manner. Perhaps the friend was 'going on a bit'. I have one or two callers like that.
I hope you managed to find something nice for you both to watch this evening and that tonight goes smoothly for you.
x
That's interesting, Joanne. Eric has been convinced recently that we were both booked in to play a round of golf with someone he couldn't remember. He was exasperated with me because I couldn't think who that person might be. This was well before my time..his first wife was an avid golfer, like him. I've never played golf.
I've worked out that the "home" he wants to return to just now is the house he lived in with his first wife just after they were married..about 50 years ago.
He's been up since 3 thismorning. I heard him shouting for me from the lounge..standing bent over his zimmer looking very lost. He asked where I'd been and didn't seem to understand I'd been in bed asleep.
I settled him in his chair with a cup of tea and went back to bed..
But he would shout periodically to ask where I was and what I was doing.
We've not seen much of each other today as he's been asleep..and I had a sitter for 4 hours so managed to escape for a while..
Love xx
I hope you managed to get some rest and relaxation while the sitter was with Eric. And I sincerely hope you didn't go up to the golf club for a few holes!
It must be so difficult for you Gigi, not only with Eric's memory but being deprived of sleep as well.
Take care xxx
It must be so difficult for you Gigi, not only with Eric's memory but being deprived of sleep as well.
Take care xxx
Just updating...and asking for help!
Another disturbed night. Eric was up some time after 3...I was too.
Although I can go back to bed and leave him in his chair it's impossible to return to real sleep.
Today he's very mixed up again. Not sure whether he's just got out of bed or what time of day it is. Whether he has to go home, to work or to school. And not sure who has paid him money or whether he owes any money to anyone.
The sitter today has verified and documented this.
Yesterday and today (just now) he has been incontinent of urine after a couple of weeks of being dry...and approximately at the same time... It is possible that Eric is constipated..(I've given him Movical thisafternoon)
No news from the AS Advocacy service yet.
But an interesting phone call from our SW late thisafternoon. She wants to visit on Friday to go through Eric's recent assessment and my Carer's Assessment. Normally she pops them in the post for me to read and return with a signature.
She did mention that she's had a visit from her manager..and thinks it best if she comes out to discuss things again.
I don't know what to think.
If I can get her to read this thread on Friday it may help.
Is it too much to ask of you to help me to summarise between now and then so I can make a list of "bullet points" to present to her?
Living with it in the here and now and being short on sleep doesn't give me the clarity of thought I need to sort this out in my own head.
I am challenging the fact that Eric has been assessed (by his SW) as having Mental Capacity. That putting him into permanent residential care is a Deprivation of his Liberty.
Thanks...
Love xx
Another disturbed night. Eric was up some time after 3...I was too.
Although I can go back to bed and leave him in his chair it's impossible to return to real sleep.
Today he's very mixed up again. Not sure whether he's just got out of bed or what time of day it is. Whether he has to go home, to work or to school. And not sure who has paid him money or whether he owes any money to anyone.
The sitter today has verified and documented this.
Yesterday and today (just now) he has been incontinent of urine after a couple of weeks of being dry...and approximately at the same time...
It is possible that Eric is constipated..(I've given him Movical thisafternoon)No news from the AS Advocacy service yet.
But an interesting phone call from our SW late thisafternoon. She wants to visit on Friday to go through Eric's recent assessment and my Carer's Assessment. Normally she pops them in the post for me to read and return with a signature.
She did mention that she's had a visit from her manager..and thinks it best if she comes out to discuss things again.
I don't know what to think.
If I can get her to read this thread on Friday it may help.
Is it too much to ask of you to help me to summarise between now and then so I can make a list of "bullet points" to present to her?
Living with it in the here and now and being short on sleep doesn't give me the clarity of thought I need to sort this out in my own head.
I am challenging the fact that Eric has been assessed (by his SW) as having Mental Capacity. That putting him into permanent residential care is a Deprivation of his Liberty.
Thanks...
Love xx
Hello Gigi:
This is not exactly summarising but immediately comes to mind are:
Messing with radiators/what else could he mess with (potential dangers)
Unaware of day/night and which 'decade' he is in (which wife etc)
High risk of falls
I need to think more on this and maybe others will contribute too.
I am pleased the SW is coming out - sounds like there has been a rethink on the situation
Love
This is not exactly summarising but immediately comes to mind are:
Messing with radiators/what else could he mess with (potential dangers)
Unaware of day/night and which 'decade' he is in (which wife etc)
High risk of falls
I need to think more on this and maybe others will contribute too.
I am pleased the SW is coming out - sounds like there has been a rethink on the situation
Love
Hi Gigi
Not sure if this is the sort of thing you want, just running through your thread now, if it is useful let me know as I have a bit of time watching over a sick pooch and can look at your other posts. No offence taken if it's not what you need and if anyone can add to it to make it better that would be great.
jxx
++++++++++++++++++++++++
Lack of insight/empathy
Our GP has just phoned and is visiting tomorrow evening.He caught me on the hop and I was crying.
Eric doesn't see any problem because he's already said I can watch whatever I want to watch on TV tonightAll that is required of me is to roll cigarettes, provide a meal, and ensure that whatever is on the TV is acceptable.
Lack of perception
It feels to me as though I've come to the end of the road..I've run out of ideas and out of energy to keep things going
But if I say I'm tired, it's questioned.
If I'm not a visible presence, it's questioned.
If the phone rings, it's questioned.
If the doorbell rings, it's questioned.
If I hang wet washing on a radiator, it's questioned.
If I sneeze, it's questioned.
If I go to the loo I'm asked where I've been.
To cap it all, it doesn't matter what answer I give. It is rarely the truth. Nothing I say seems to meet with understanding.
Health
Doctor is concerned about Eric's chest, and his headaches and is going to organise an MRI scan of his head and chest.
Memory
And just for the record, although he's been Eric's GP for almost 20 years, Eric didn't recognise him and asked him who he was
Not sure if this is the sort of thing you want, just running through your thread now, if it is useful let me know as I have a bit of time watching over a sick pooch and can look at your other posts. No offence taken if it's not what you need and if anyone can add to it to make it better that would be great.
jxx
++++++++++++++++++++++++
Lack of insight/empathy
Our GP has just phoned and is visiting tomorrow evening.He caught me on the hop and I was crying.
Eric doesn't see any problem because he's already said I can watch whatever I want to watch on TV tonightAll that is required of me is to roll cigarettes, provide a meal, and ensure that whatever is on the TV is acceptable.
Lack of perception
It feels to me as though I've come to the end of the road..I've run out of ideas and out of energy to keep things going
But if I say I'm tired, it's questioned.
If I'm not a visible presence, it's questioned.
If the phone rings, it's questioned.
If the doorbell rings, it's questioned.
If I hang wet washing on a radiator, it's questioned.
If I sneeze, it's questioned.
If I go to the loo I'm asked where I've been.
To cap it all, it doesn't matter what answer I give. It is rarely the truth. Nothing I say seems to meet with understanding.
Health
Doctor is concerned about Eric's chest, and his headaches and is going to organise an MRI scan of his head and chest.
Memory
And just for the record, although he's been Eric's GP for almost 20 years, Eric didn't recognise him and asked him who he was
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Hi gigi
That does all sound promising. At least they are taking you seriously now.
Jayne, that's a brilliant summary. I'd add:
Spasmodic incontinence
Insistance on watching the same film over and over again
Inability to cope with more than one person at a time, even family.
Wanting to 'go home'.
Confusion with first wife, and original home.
Inability to converse on the phone.
If I remember anything else, I'll get back to you.
Love,
That does all sound promising. At least they are taking you seriously now.
Jayne, that's a brilliant summary. I'd add:
Spasmodic incontinence
Insistance on watching the same film over and over again
Inability to cope with more than one person at a time, even family.
Wanting to 'go home'.
Confusion with first wife, and original home.
Inability to converse on the phone.
If I remember anything else, I'll get back to you.
Love,
I'd add
lack of understanding of own physical capabilities, resulting in falls and requiring paramedic assistance
lack of understanding of own physical capabilities, resulting in falls and requiring paramedic assistance
Dear gigi
I would want to know why the SW has been advised by her manager to visit to discuss the assessment when she usually puts the findings in the post.
Is anyone going to be able to support you and help you `think` when you are obviously sleep deprived and not at your sharpest.
I would contact the AS advocate and see if anyone could be available to support you on Friday.
This is You
You have under 21 hours care time weekly.
4 hours each, Tues, Wed, Thurs. equal to 12 hours
1.25 hours morning and evening every day, equal to 8 .75 hours
In your `free` [ sitting ] time you spend 4 hours as carer to your mother
In your `free at home time` you spend 3 hours each, supporting your two sons.
You are asked to attend meetings with Key workers to discuss your sons` progress and this has to be done during your sitting time.
Your sleep is disturbed by Eric every night without fail, at any time. Once awake he insists on a cup of tea and a cigarette ,which you have to get up to make and supervise, to ensure his safety.
Your CPN diagnosed depression. Your GP discounted depression absolutely.
You are caring for Eric without support for 21 hours daily.
You are rapidly approaching carer burnout if you are not already there.
You feel you will no longer be able to meet Eric`s needs and this will put him at risk.
This is Eric
During the day he is either sleeping or demanding attention. You have no way of knowing whether he will be sleeping or demanding attention so you are on permanent alert.
He is incontinent of urine several times weekly.
Between 5pm and 5am his behaviour is unpredictable.
He has lost all sense of day and night.
He has hallucinations. He has seen people in the house.
He is delusional. He sees you as his first wife. He asks for his little girls. He wants to return to his family home to collect the post.
He sees himself as a person of status within the workplace.
He has periods of extreme confusion.
He is a vulnerable adult.
He might be at risk as you become unable to cope.
Eric is believed by the SW still to have mental capacity.
I would want to know why the SW has been advised by her manager to visit to discuss the assessment when she usually puts the findings in the post.
Is anyone going to be able to support you and help you `think` when you are obviously sleep deprived and not at your sharpest.
I would contact the AS advocate and see if anyone could be available to support you on Friday.
This is You
You have under 21 hours care time weekly.
4 hours each, Tues, Wed, Thurs. equal to 12 hours
1.25 hours morning and evening every day, equal to 8 .75 hours
In your `free` [ sitting ] time you spend 4 hours as carer to your mother
In your `free at home time` you spend 3 hours each, supporting your two sons.
You are asked to attend meetings with Key workers to discuss your sons` progress and this has to be done during your sitting time.
Your sleep is disturbed by Eric every night without fail, at any time. Once awake he insists on a cup of tea and a cigarette ,which you have to get up to make and supervise, to ensure his safety.
Your CPN diagnosed depression. Your GP discounted depression absolutely.
You are caring for Eric without support for 21 hours daily.
You are rapidly approaching carer burnout if you are not already there.
You feel you will no longer be able to meet Eric`s needs and this will put him at risk.
This is Eric
During the day he is either sleeping or demanding attention. You have no way of knowing whether he will be sleeping or demanding attention so you are on permanent alert.
He is incontinent of urine several times weekly.
Between 5pm and 5am his behaviour is unpredictable.
He has lost all sense of day and night.
He has hallucinations. He has seen people in the house.
He is delusional. He sees you as his first wife. He asks for his little girls. He wants to return to his family home to collect the post.
He sees himself as a person of status within the workplace.
He has periods of extreme confusion.
He is a vulnerable adult.
He might be at risk as you become unable to cope.
Eric is believed by the SW still to have mental capacity.
Hi Gigi. I think the summaries and the advice so far are excellent. You’ll need to stress the coping element to the point that you’re in danger of becoming seriously ill yourself, or that you might have to leave the situation to avoid this (nobody can force you to care for Eric).
I agree with Sylvia that it would be good if you could have someone with you on Friday, to help you think straight (I know how difficult that is in a super-stressed state) and to support you. My AS support manager wasn’t present but talked to the SW before he came last week, stressed the importance of me getting a break and urged him to convey that need to Philip (she layed it on quite thick, told him that when she saw me I was chain-smoking, crying, etc). It worked. I also have a wonderful carers’ support team in my area who’ve been known to come out at short notice when I desperately needed help.
Good luck and a big hug - Kathy
I agree with Sylvia that it would be good if you could have someone with you on Friday, to help you think straight (I know how difficult that is in a super-stressed state) and to support you. My AS support manager wasn’t present but talked to the SW before he came last week, stressed the importance of me getting a break and urged him to convey that need to Philip (she layed it on quite thick, told him that when she saw me I was chain-smoking, crying, etc). It worked. I also have a wonderful carers’ support team in my area who’ve been known to come out at short notice when I desperately needed help.
Good luck and a big hug - Kathy
Thanks
I'm very grateful to you all who have put this into words for me.
Earlier thisevening we had a very brief power cut which not only knocked out the TV.... but also sent the laptop and my mobile phone (which was on charge at the time) a bit haywire..
It's such a relief to have the laptop back and working...
Tonight is just like a re-run of last night, so far.
The carer came in and woke Eric up to finish getting him ready for bed, but he refused to go. So now he's back in his chair, ready for bed, and fast asleep. Out for the count.
We both tried to persuade Eric into bed but he wasn't having it, his face was set and he marched back into the lounge with his zimmer frame and plonked himself in his chair.
I could go to bed now and leave him. He's warm and safe as long as he doesn't try to move.
Or I can stay up and watch over him until he wakes.
Or I can try to wake him and get him into bed myself and hope that he'll sleep through....which is what I'll try to do.
Tomorrow I'll ring the Advocacy Service and ask if anyone can be present with me on Friday. Failing that my daughter has agreed to be here to back me up.
When I read through your summaries it really brings it home just how much there is to cope with.
Humble thanks to you all for your time and energy.
Love from ( a very weary) gigi
xx
I'm very grateful to you all who have put this into words for me.
Earlier thisevening we had a very brief power cut which not only knocked out the TV....
but also sent the laptop and my mobile phone (which was on charge at the time) a bit haywire..It's such a relief to have the laptop back and working...
Tonight is just like a re-run of last night, so far.
The carer came in and woke Eric up to finish getting him ready for bed, but he refused to go. So now he's back in his chair, ready for bed, and fast asleep. Out for the count.
We both tried to persuade Eric into bed but he wasn't having it, his face was set and he marched back into the lounge with his zimmer frame and plonked himself in his chair.
I could go to bed now and leave him. He's warm and safe as long as he doesn't try to move.
Or I can stay up and watch over him until he wakes.
Or I can try to wake him and get him into bed myself and hope that he'll sleep through....which is what I'll try to do.
Tomorrow I'll ring the Advocacy Service and ask if anyone can be present with me on Friday. Failing that my daughter has agreed to be here to back me up.
When I read through your summaries it really brings it home just how much there is to cope with.
Humble thanks to you all for your time and energy.
Love from ( a very weary) gigi
xx
Hi gigi,
That seems to a very important point to make - that you feel that Eric does not have the mental capacity to make a decision about where he could best be cared for.
With your nursing background, you probably know more about establishing capacity than most of us, but I'm adding some links to some PDF's just in case they're helpful:
This is a really good summary from the Social Care Institute for Excellence:
http://www.scie.org.uk/publications/ataglance/ataglance05.pdf
This is Hackney’s Mental Capacity Act support pack - longer and more detailed, but the sort of document that a social worker might be basing their practice on:
http://www.hackney.gov.uk/mental-capacity-act-leaflet.pdf
This is a link to a page where you can download Assessment of Capacity in Adults: Interim Guidance for Psychologists (2006). This is a large document (144 pages) but the case studies from page 52 onwards are worth looking at:
http://www.bps.org.uk/document-download-area/document-download$.cfm?file_uuid=E2151390-1143-DFD0-7E51-743B52520F24
Here are just a few random points I've picked up from my reading this evening:
* The decision about whether or not to enter permanent care is a major one and the person or team assessing capacity should be very experienced in assessing mental capacity in these types of questions. Sometimes medical reports were required to inform the process.
* In order to have the capacity to make this decision Eric has to have some insight into his current level of need. It would be interesting to ask him what help he has at the moment in order to live at home? Would he mention the falls or incontinence? Do you think he would say he could manage on his own if you had to leave the house for say, 48 hours to help your mum?
* In one of the case studies where the lady was unable to see the benefits of entering a care home, it was agreed to try a four-week trial to see how the actual experience would influence her thinking.
Hope you can get a the support you need to put both your future and Eric's on a more secure and sustainable footing.
Take care,
That seems to a very important point to make - that you feel that Eric does not have the mental capacity to make a decision about where he could best be cared for.
With your nursing background, you probably know more about establishing capacity than most of us, but I'm adding some links to some PDF's just in case they're helpful:
This is a really good summary from the Social Care Institute for Excellence:
http://www.scie.org.uk/publications/ataglance/ataglance05.pdf
This is Hackney’s Mental Capacity Act support pack - longer and more detailed, but the sort of document that a social worker might be basing their practice on:
http://www.hackney.gov.uk/mental-capacity-act-leaflet.pdf
This is a link to a page where you can download Assessment of Capacity in Adults: Interim Guidance for Psychologists (2006). This is a large document (144 pages) but the case studies from page 52 onwards are worth looking at:
http://www.bps.org.uk/document-download-area/document-download$.cfm?file_uuid=E2151390-1143-DFD0-7E51-743B52520F24
Here are just a few random points I've picked up from my reading this evening:
* The decision about whether or not to enter permanent care is a major one and the person or team assessing capacity should be very experienced in assessing mental capacity in these types of questions. Sometimes medical reports were required to inform the process.
* In order to have the capacity to make this decision Eric has to have some insight into his current level of need. It would be interesting to ask him what help he has at the moment in order to live at home? Would he mention the falls or incontinence? Do you think he would say he could manage on his own if you had to leave the house for say, 48 hours to help your mum?
* In one of the case studies where the lady was unable to see the benefits of entering a care home, it was agreed to try a four-week trial to see how the actual experience would influence her thinking.
Hope you can get a the support you need to put both your future and Eric's on a more secure and sustainable footing.
Take care,
No rest tonight...
Eric is in a lot of pain..I suspect he may be constipated but he's very confused and his mobility has deteriorated tonight.
Because of his diverticulitis I'm not taking any chances.
NHS direct..who I phoned for advice, have contacted our out of hours GP service. They're sending a doctor out tonight to assess him.
Love xx
Eric is in a lot of pain..I suspect he may be constipated but he's very confused and his mobility has deteriorated tonight.
Because of his diverticulitis I'm not taking any chances.
NHS direct..who I phoned for advice, have contacted our out of hours GP service. They're sending a doctor out tonight to assess him.
Love xx
The GP has left me with an enema to give Eric when the carer comes in to help later thismorning.
I got to bed sometime after 2.
Just after 5 the alarm on the pressure mat woke me. Eric was on the floor.
He was in the wrong postion to use the Elk so I phoned for help. The Paramedic arrived quite quickly and between the 2 of use we got Eric back to his feet. He's unhurt.
And another day begins.
Love xx
I got to bed sometime after 2.
Just after 5 the alarm on the pressure mat woke me. Eric was on the floor.
He was in the wrong postion to use the Elk so I phoned for help. The Paramedic arrived quite quickly and between the 2 of use we got Eric back to his feet. He's unhurt.
And another day begins.
Love xx
You must be exhausted.
This is too much for any one person to manage and somehow your blinkered CPN and SW must be made to realize that.
While they still insist Eric has mental capacity you should be provided with night sitters. You cannot function with 3 hours sleep.
This is too much for any one person to manage and somehow your blinkered CPN and SW must be made to realize that.
While they still insist Eric has mental capacity you should be provided with night sitters. You cannot function with 3 hours sleep.
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