TIPPING POINT

[Grahamstown]

If this were a proper job it would require 4 carers doing 8 hour shifts

When I went to look at a care home last week for future respite, the manager said to me that a staff member would find it very difficult to look after a resident 24/7 and that I must try and take care of myself to avoid breaking down. Wise words and we here all know that it is true without any hope of help. Help if available costs a lot of money anyway.

 

[Wifenotcarer]

When I went to look at a care home last week for future respite, the manager said to me that a staff member would find it very difficult to look after a resident 24/7 and that I must try and take care of myself to avoid breaking down. Wise words and we here all know that it is true without any hope of help. Help if available costs a lot of money anyway.

That is very easy for the Care Home Manager to say and, of course, she has the 'perfect' solution. Just book your PWD in for loads of respite care or, indeed for permanent residence. That is HER job to proffer this easy way out, but as we all on Tipping Point know, beyond the financial means of most of us and does not absolve us of the responsibility of ensuring the long term welfare and safety of our loved one.

 

[canary]

My new hobbies comprise knitting, feeding the birds in the garden and playing mindless computer games. The knitting and computer games are both frustrating as OH constantly interrupts, needing something at a crucial moment, which requires full attention.

A wry smile as you have perfectly described my hobbies too.
Its like being in a cage..............

 

[maryjoan]

A wry smile as you have perfectly described my hobbies too.
Its like being in a cage..............

If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.

Would anyone notice, or care? Or would it cause a ruckus?

 

[Duggies-girl]

If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.

Would anyone notice, or care? Or would it cause a ruckus?

Oh a hotel for two days all on my own please. I needn't even leave the room, just shut the door with me inside and nobody else to bother me.

I could shower and lounge on the bed, sleep even. I will do this sometime.

 

[kindred]

That is very easy for the Care Home Manager to say and, of course, she has the 'perfect' solution. Just book your PWD in for loads of respite care or, indeed for permanent residence. That is HER job to proffer this easy way out, but as we all on Tipping Point know, beyond the financial means of most of us and does not absolve us of the responsibility of ensuring the long term welfare and safety of our loved one.

Oh my dear, sometimes it's not the easy way out. It was forced on my as it were, by my physical condition of breakdown and the fact it had become impossible for me to go on looking after Keith at home. It will strip us of all our savings but I had no choice and certainly does not absolve me from responsibility.
I know, this is all a nightmare, I know. With love, Geraldine aka kindred.xx

 

[kindred]

If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.

Would anyone notice, or care? Or would it cause a ruckus?

well, for a start, my home would be completely trashed on return. Gxxx

 

[canary]

If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.

Would anyone notice, or care? Or would it cause a ruckus?

Id come back to discover that hed been on a spending spree and spent hundreds of pounds on things we dont need and clothes that dont fit; that hed been conned out of a a couple of thousand pounds by a scam; that hed got himself some viagra and a girlfriend; that hed changed our gas/electricity supplier to a load of cowboys who overcharged us and I'd have to go to the ombudsman.

No, Im not exaggerating - all of these things have happened at some stage when I went to stay with mum for a couple days to try and sort out her care. I dont dare leave him for longer than a few hours now.

 

[canary]

duplicate

 

[padmag]

If we could separate our emotions from all this - what would happen if we all went on strike for 48 hours. If, we all, together, left our homes and booked into hotels for 2 days.

Would anyone notice, or care? Or would it cause a ruckus?

This is going back a few years in his earlier dementia days - Richard booked and paid for a holiday to Malta, with a view to buying a timeshare. We did go on the holiday as I was loath to lose the cash, but we were plagued with salesmen!

 

[where did she go]

Feeling awful about how I reacted today and, to be honest, ashamed. Things have been going so very smoothly lately and even ‘normal’ and could almost forget about her ALZ. Today I went to visit my youngest daughter, a mother of 5 doing a nursing degree who needed support and a sounding board so, as it is something she rarely wants was I was more than willing. OH was happy with that and said why don’t you have a game of golf, meaning the practice field near to my daughter and so off I went and agreeing to be back for lunch which I was. As I opened the door back home I was met by so much anger demanding where I had been and did I know that there was a dirty mark on the hall mat left by my shoes!
Next thing was a tirade of how she has to do everything, which is totally untrue and unfounded, but she was livid. My first words conciltory and automatically non confrontational but with no affect and so I lost it and just yelled and shouted back which became a slanging match followed by silent treatment which nothing can breach or so it seems.
That’s it really, we have sat in silence all afternoon with her, as she does every day, watching the old reapeat TV programmes all of which are recorded overnight and during the day.
I lost all understanding and compassion and at the time just ignored the obvious fact that she had forgotten where I had gone and that she can’t help being obsessive about cleanliness. I know she will forget. Most of this but I most certainly won€t that’s for sure.
Thanks for letting me rant.[/

Feeling awful about how I reacted today and, to be honest, ashamed. Things have been going so very smoothly lately and even ‘normal’ and could almost forget about her ALZ. Today I went to visit my youngest daughter, a mother of 5 doing a nursing degree who needed support and a sounding board so, as it is something she rarely wants was I was more than willing. OH was happy with that and said why don’t you have a game of golf, meaning the practice field near to my daughter and so off I went and agreeing to be back for lunch which I was. As I opened the door back home I was met by so much anger demanding where I had been and did I know that there was a dirty mark on the hall mat left by my shoes!
Next thing was a tirade of how she has to do everything, which is totally untrue and unfounded, but she was livid. My first words conciltory and automatically non confrontational but with no affect and so I lost it and just yelled and shouted back which became a slanging match followed by silent treatment which nothing can breach or so it seems.
That’s it really, we have sat in silence all afternoon with her, as she does every day, watching the old reapeat TV programmes all of which are recorded overnight and during the day.
I lost all understanding and compassion and at the time just ignored the obvious fact that she had forgotten where I had gone and that she can’t help being obsessive about cleanliness. I know she will forget. Most of this but I most certainly won€t that’s for sure.
Thanks for letting me rant.

 

[where did she go]

Feeling awful about how I reacted today and, to be honest, ashamed. Things have been going so very smoothly lately and even ‘normal’ and could almost forget about her ALZ. Today I went to visit my youngest daughter, a mother of 5 doing a nursing degree who needed support and a sounding board so, as it is something she rarely wants was I was more than willing. OH was happy with that and said why don’t you have a game of golf, meaning the practice field near to my daughter and so off I went and agreeing to be back for lunch which I was. As I opened the door back home I was met by so much anger demanding where I had been and did I know that there was a dirty mark on the hall mat left by my shoes!
Next thing was a tirade of how she has to do everything, which is totally untrue and unfounded, but she was livid. My first words conciltory and automatically non confrontational but with no affect and so I lost it and just yelled and shouted back which became a slanging match followed by silent treatment which nothing can breach or so it seems.
That’s it really, we have sat in silence all afternoon with her, as she does every day, watching the old reapeat TV programmes all of which are recorded overnight and during the day.
I lost all understanding and compassion and at the time just ignored the obvious fact that she had forgotten where I had gone and that she can’t help being obsessive about cleanliness. I know she will forget. Most of this but I most certainly won€t that’s for sure.
Thanks for letting me rant.

I can completely understand where you are coming from. My wife insists on watching recorded tv programmes which we must have watched 20 times. She wont go for memory tests or allow me to be with her when we visit the GP. He has agreed with me that she has dementia for over a year now. She gets very very angry at me for lying as according to her I never tell her anything. Yesterday for example we had to go to collect a new car which she had to sign for (motability) and as she finds it very hard to go out it had been planned and discussed ad nauseam for weeks and written on the calendar. After we returned home with the car later that evening she turned really violent and wanted to know why I had dragged her out of bed early in the morning so that I could get a new car which she didn't want and knew nothing about. There is obviously no answer to these questions which is really the most challenging aspect of her illness. She constantly loses things and gets angry and violent accusing me of being the cause. Within 30 minutes she said she was sorry for being angry. This morning she started off again screaming at me as to why I did such a horrible thing dragging her out of bed for something she didn't know about. Groundhog Day . I have no wife I have no life I have no peace I have no future I have no hope. I'm sick of being stuck in this hell. I could kee on ranting but hey that's life as a carer ain't it.

 

[maryjoan]

I can completely understand where you are coming from. My wife insists on watching recorded tv programmes which we must have watched 20 times. She wont go for memory tests or allow me to be with her when we visit the GP. He has agreed with me that she has dementia for over a year now. She gets very very angry at me for lying as according to her I never tell her anything. Yesterday for example we had to go to collect a new car which she had to sign for (motability) and as she finds it very hard to go out it had been planned and discussed ad nauseam for weeks and written on the calendar. After we returned home with the car later that evening she turned really violent and wanted to know why I had dragged her out of bed early in the morning so that I could get a new car which she didn't want and knew nothing about. There is obviously no answer to these questions which is really the most challenging aspect of her illness. She constantly loses things and gets angry and violent accusing me of being the cause. Within 30 minutes she said she was sorry for being angry. This morning she started off again screaming at me as to why I did such a horrible thing dragging her out of bed for something she didn't know about. Groundhog Day . I have no wife I have no life I have no peace I have no future I have no hope. I'm sick of being stuck in this hell. I could kee on ranting but hey that's life as a carer ain't it.

By heck it is the life of a carer - it is no life at all!
I am sneaking off to do some work, whilst he watches some very old TV programmes ( again) but instead of working, I find myself on here, just looking for interaction with another human being............
Groundhog Day again and again - mind you it was a good film!

 

[rhubarbtree]

Hi Maryjoan,
Same with me. Wrote an email that needed sending and should now leave PC and prepare some material for next crafting session. BUT I find it so hard to get on with anything when OH is just sitting staring into space in the living room. Much easier to flit around on here.

 

[kindred]

I can completely understand where you are coming from. My wife insists on watching recorded tv programmes which we must have watched 20 times. She wont go for memory tests or allow me to be with her when we visit the GP. He has agreed with me that she has dementia for over a year now. She gets very very angry at me for lying as according to her I never tell her anything. Yesterday for example we had to go to collect a new car which she had to sign for (motability) and as she finds it very hard to go out it had been planned and discussed ad nauseam for weeks and written on the calendar. After we returned home with the car later that evening she turned really violent and wanted to know why I had dragged her out of bed early in the morning so that I could get a new car which she didn't want and knew nothing about. There is obviously no answer to these questions which is really the most challenging aspect of her illness. She constantly loses things and gets angry and violent accusing me of being the cause. Within 30 minutes she said she was sorry for being angry. This morning she started off again screaming at me as to why I did such a horrible thing dragging her out of bed for something she didn't know about. Groundhog Day . I have no wife I have no life I have no peace I have no future I have no hope. I'm sick of being stuck in this hell. I could kee on ranting but hey that's life as a carer ain't it.

Welcome to you and I am so sorry you are in such distress. It is a hell, I do agree. I used to feel I was in prison with no hope of parole. I wish I could help. My OH had a terrible accident and best interests statement made that he had to have residential. I was broken completely. Savings planned for retirement all going now. Have to be careful not to exchange one hell for another, but nothing was as horrible as being sole carer for five years with not one day off. I agree, it is a terrible way to live, and there are so many of us.
with warmest wishes, you will find friends and support here. Kindred.

 

[where did she go]

Welcome to you and I am so sorry you are in such distress. It is a hell, I do agree. I used to feel I was in prison with no hope of parole. I wish I could help. My OH had a terrible accident and best interests statement made that he had to have residential. I was broken completely. Savings planned for retirement all going now. Have to be careful not to exchange one hell for another, but nothing was as horrible as being sole carer for five years with not one day off. I agree, it is a terrible way to live, and there are so many of us.
with warmest wishes, you will find friends and support here. Kindred.

Thank you taking the time to reply. I appreciate your comments very much.

 

[where did she go]

By heck it is the life of a carer - it is no life at all!
I am sneaking off to do some work, whilst he watches some very old TV programmes ( again) but instead of working, I find myself on here, just looking for interaction with another human being............
Groundhog Day again and again - mind you it was a good film!

Thanks for the reply and bit of humour to which helps. Although I have watched that film a lot????

 

[where did she go]

Thank you taking the time to reply. I appreciate your comments very much.

I don't know how I would feel if my OH was in residential care as I know she would berate me if I ever dreamed of such a thing....................

 

[AliceA]

Home or away, the amount of difficulties is probably the same just a different set.
The stress catches us out, it is subtle too, difficult to explain.
When we put it into words it can seem feeble.
No one understand unless they have actually been in that situation, day after day and year after year.
Knowing the facts is not the same as living these day in and day out.

 

[Agzy]

I can completely understand where you are coming from. My wife insists on watching recorded tv programmes which we must have watched 20 times. She wont go for memory tests or allow me to be with her when we visit the GP. He has agreed with me that she has dementia for over a year now. She gets very very angry at me for lying as according to her I never tell her anything. Yesterday for example we had to go to collect a new car which she had to sign for (motability) and as she finds it very hard to go out it had been planned and discussed ad nauseam for weeks and written on the calendar. After we returned home with the car later that evening she turned really violent and wanted to know why I had dragged her out of bed early in the morning so that I could get a new car which she didn't want and knew nothing about. There is obviously no answer to these questions which is really the most challenging aspect of her illness. She constantly loses things and gets angry and violent accusing me of being the cause. Within 30 minutes she said she was sorry for being angry. This morning she started off again screaming at me as to why I did such a horrible thing dragging her out of bed for something she didn't know about. Groundhog Day . I have no wife I have no life I have no peace I have no future I have no hope. I'm sick of being stuck in this hell. I could kee on ranting but hey that's life as a carer ain't it.

So with you and sympathise as the extreme mood swings are the worst to cope with as they come out of the blue. That coupled with the anti social feelings she now has make for difficult decisions but thanks to family and neighbour support I am managing to escape on holidays for solo travelles but for how long? Nobody knows or can guess, good luck.