TIPPING POINT

AliceA

Registered User
May 27, 2016
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0
I recorded and watched in the morning. My husband watched with me, over a coffee we reflected on our life, our experiences. Although there are logic and short term memory issues, long term memories are still good when he is not tired and relaxed.
I did ask, gently, if there was anything we needed to do or people we needed to see.
He actually said that no, as we could not do them now. I think he was thinking of my abilities rather than his. He has just bought new walking shoes or rather he asked me to order on line.
Not sure I will find a Rollator friendly mountain :) oh with and armchairs for naps along the way!
Xxx
 

Dutchman

Registered User
May 26, 2017
2,348
0
76
Devon, Totnes
Thanks, Peter, good to hear from you, really good. I think the brain damage means that they no longer really know what it is to be human, clean etc. I know, I know. Asking what you really want to happen is a difficult question and of course the answer deep inside is as you feel it. Of course it is.
No, not self centred or selfish at all. I could say more but I am afraid, even on here. So read between the lines, Peter and really know I am with you all the way.
with love, Geraldinexx
Oh boy! First of all bless you for your kind comments. Now this frightening......last night, about 12.00 midnight, I went to another bedroom to get some sleep and then heard my wife walking around so I go and see what’s happening. She’s getting dressed and is planning to go downstairs to do what?? So I say what are you doing? Nothing. This is the frightening bit....I lose my temper and shout I must get some sleep. Nothing. I lose my temper more and grab her arm and squeeze because the red mist is coming down. I let go and suddenly realise it’s so easy to lose it completely and then what? I had to talk to someone about this because it frightens me as I’ve always considered myself a patient person. So there you are...we are capable of anything given the circumstances. This is a bit like the confessional.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Like you we don’t talk as she even forgets yesterday’s events. The ability to make herself understood is going and I feel so sorry for her as it must be frustrating and frightening. She was champion at word games, excellent at organising parties with made up games to play, run rings round me at Scrabble...now a 50 piece jig saw or snakes and ladders baffles her.
I think our OHs are very similar. Its not easy is it?

Edit - Ive just read your latest post. Im so very sorry. Ive shouted at OH recently because he keeps going outside and falling. He hasnt hurt himself, but all his clothes needed washing and my tumble dryer has broken. Yesterday he had no clean and dry trousers left. We have both got tired, you and I.I thought about getting some respite at a local convalescent home, but its closed for refurbishment.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Oh boy! First of all bless you for your kind comments. Now this frightening......last night, about 12.00 midnight, I went to another bedroom to get some sleep and then heard my wife walking around so I go and see what’s happening. She’s getting dressed and is planning to go downstairs to do what?? So I say what are you doing? Nothing. This is the frightening bit....I lose my temper and shout I must get some sleep. Nothing. I lose my temper more and grab her arm and squeeze because the red mist is coming down. I let go and suddenly realise it’s so easy to lose it completely and then what? I had to talk to someone about this because it frightens me as I’ve always considered myself a patient person. So there you are...we are capable of anything given the circumstances. This is a bit like the confessional.
Look, we are not saints, sweetheart. We are driven to extremes. You are a patient person. Tell me, who can help you?
warmest, keep talking, Geraldine
 

Unhappy15

Registered User
Feb 7, 2015
146
0
Oh boy! First of all bless you for your kind comments. Now this frightening......last night, about 12.00 midnight, I went to another bedroom to get some sleep and then heard my wife walking around so I go and see what’s happening. She’s getting dressed and is planning to go downstairs to do what?? So I say what are you doing? Nothing. This is the frightening bit....I lose my temper and shout I must get some sleep. Nothing. I lose my temper more and grab her arm and squeeze because the red mist is coming down. I let go and suddenly realise it’s so easy to lose it completely and then what? I had to talk to someone about this because it frightens me as I’ve always considered myself a patient person. So there you are...we are capable of anything given the circumstances. This is a bit like the confessional.
Hello Dutchman,
I have just read your post and felt I must reply.
I know what the 'red mist' feels like, my husband used to get up and walk around from about 2am every morning, getting shoes and belts out of the wardrobe to go out. Trying to explain that it was the middle of the night was pointless and all that I remember is feeling that I was so tired and wishing it would all end. I have said the most terrible things to him and even thought about killing us both, that is a constant source of shame, but what can you do?
This stopped when my husband became violent and was sectioned, at that point I took the decision that care was the only answer.
He is settled and content, I am lonely but I visit him everyday so that is our life now.
What I am saying Dutchman is please get help as soon as possible, we all understand on TP how easy it is to snap when you are tired and driven to distraction but even respite would give you a much deserved break.
Please take care and be kind to yourself
Thinking of you
Kathy
 

AliceA

Registered User
May 27, 2016
2,911
0
Please get on to Social Services, they should have an emergency number explain you are at breaking point and need help now if not sooner.
They have a duty team and they are responsible if either of you are in any danger they have a duty of care.
Xxx
 

Rosebush

Registered User
Apr 2, 2018
1,478
0
Me to Kathy, my husband became violent and is now in a care home, unfortunately I can't visit him every day as the home is too far away, he has been assessed now so I am hoping he can be moved closer as I do not drive and can only afford to go once a week! Lx
 

AliceA

Registered User
May 27, 2016
2,911
0
I hope you find a nearer place soon the distance must be so distressing. Xxx
 

Unhappy15

Registered User
Feb 7, 2015
146
0
Me to Kathy, my husband became violent and is now in a care home, unfortunately I can't visit him every day as the home is too far away, he has been assessed now so I am hoping he can be moved closer as I do not drive and can only afford to go once a week! Lx
Hello Rosebush,
I know how you feel, when my husband was sectioned he was placed in a unit about 40 miles from home, it was the only space available at the time. Luckily he was transferred to a unit near to home after a couple of weeks so that wasn't so bad.
When the section notice was finished he was assessed and I was told he needed a 'continuing' care package, meaning someone coming in for 15 minutes a day!
I knew that I could not take care of him at home and after a lot of searching I found a home that met all of his requirements but we are self funding. We are starting the 4th year of care and so far it has cost nearly £170,000, almost all his savings and pensions so what the future holds I try not to think about.
There really is no care for the carer is there? We are just seen as dispensable yet without us what would it cost the state to cover the care of dementia sufferers.
I do hope your husband will be moved closer to you so you can visit more.
Do take care
Kathy x
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Did any of you see the programme by Kevin Fong a consultant anaesthetist on BBC2 last Wednesday 'We need to talk about death.' ?
It was very sensitively produced, he said although they could do so much medically the question was should they? Of course, the conditions were more physical but he said the treatments could cause more harm than good palliative care given early enough. The doctors involved all agreed that in many cases this did not shorten life but it gave better quality. This was a reference to cancer patients especially.
It stressed the need for us all to be more open about death in general. Especially in what we want for our selves.


Dementia often comes with other conditions, so wishes are not so clear cut. The importance that we tackle this early enough is apparent, it is also apparent that people do not.
I have just been reading a book of Elizabeth Kubler Ross's lectures complied after her death. She always spoke of 'unfinished' business. How important that the person who is ill is helped with any issues in their life.
So many cling on to life because of these.
She also suggests that Carers should make sure that they too deal with their unfinished business otherwise they project their own needs on the person in their care. This is aimed at doctors too, she reckoned this caused burn out.
(Physical burn out is something else)

I am a bit lost at this point but I do wonder if in the early stages of diagnosis, counselling was offered as a cost effective way of easing people into a new and frightening situation. Many behaviours in life are reactions to fear.
No less when we find ourselves in a strange country of brain illnesses with little knowledge, experience and a society in denial. The hours Carers work, are on call, surely contravenes the Slave Act. It is not help by lack of support, a lack of a listening ear, a lack of respite. I can hear the cry of Funding but look after the pennies and the pounds look after theirselves. (I could get political with a small p now but I will not!)
I do read of so many heartbreaking stories on here and there seems scant support in the society surrounding them.
Did any of you see the programme by Kevin Fong a consultant anaesthetist on BBC2 last Wednesday 'We need to talk about death.' ?
It was very sensitively produced, he said although they could do so much medically the question was should they? Of course, the conditions were more physical but he said the treatments could cause more harm than good palliative care given early enough. The doctors involved all agreed that in many cases this did not shorten life but it gave better quality. This was a reference to cancer patients especially.
It stressed the need for us all to be more open about death in general. Especially in what we want for our selves.

Dementia often comes with other conditions, so wishes are not so clear cut. The importance that we tackle this early enough is apparent, it is also apparent that people do not.
I have just been reading a book of Elizabeth Kubler Ross's lectures complied after her death. She always spoke of 'unfinished' business. How important that the person who is ill is helped with any issues in their life.
So many cling on to life because of these.
She also suggests that Carers should make sure that they too deal with their unfinished business otherwise they project their own needs on the person in their care. This is aimed at doctors too, she reckoned this caused burn out.
(Physical burn out is something else)

I am a bit lost at this point but I do wonder if in the early stages of diagnosis, counselling was offered as a cost effective way of easing people into a new and frightening situation. Many behaviours in life are reactions to fear.
No less when we find ourselves in a strange country of brain illnesses with little knowledge, experience and a society in denial. The hours Carers work, are on call, surely contravenes the Slave Act. It is not help by lack of support, a lack of a listening ear, a lack of respite. I can hear the cry of Funding but look after the pennies and the pounds look after theirselves. (I could get political with a small p now but I will not!)
I do read of so many heartbreaking stories on here and there seems scant support in the society surrounding them.
Hi,
Yes Idid watch this programme, on catch up at about 4.45am after OH had been up and down loads of times (had fallen previous afternoon requiring Paramedics to lift) so obviously I was up with him each time and finally he was alsleep, of course I wasn’t , so on went my catchup!!
I found the programme interesting and sincere in its production.
I frequently remind myself of how I felt after reading ‘In the midst of Life’ by Jennifer Worth ( author of Call the Midwife) she describes how the views on living and dying have radically changed with the rise of modern medicines , modern views of medical professionals, and modern times , whilst the fundamental desire of most people hasn’t changed at all!!!
 

AliceA

Registered User
May 27, 2016
2,911
0
Hi,
Yes Idid watch this programme, on catch up at about 4.45am after OH had been up and down loads of times (had fallen previous afternoon requiring Paramedics to lift) so obviously I was up with him each time and finally he was alsleep, of course I wasn’t , so on went my catchup!!
I found the programme interesting and sincere in its production.
I frequently remind myself of how I felt after reading ‘In the midst of Life’ by Jennifer Worth ( author of Call the Midwife) she describes how the views on living and dying have radically changed with the rise of modern medicines , modern views of medical professionals, and modern times , whilst the fundamental desire of most people hasn’t changed at all!!!

I found Jennifer Worth's book wise and sad too. When I had to have a procedure a few years back I took in a witnessed 'living will' as advised by a retired GP friend in the 90s. One nurse try to lecture me, others treated me like a hot potato, I was shunted down the list. The consultant finally came and we reached an agreement.
I hope the programme will start more conversations. We have now registered with My Decisions. This sets out exactly what intervention would be acceptable.
There is very little training for end of life care. I watch most things on catch up too.
I hope your husband is not too restless.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
I found Jennifer Worth's book wise and sad too. When I had to have a procedure a few years back I took in a witnessed 'living will' as advised by a retired GP friend in the 90s. One nurse try to lecture me, others treated me like a hot potato, I was shunted down the list. The consultant finally came and we reached an agreement.
I hope the programme will start more conversations. We have now registered with My Decisions. This sets out exactly what intervention would be acceptable.
There is very little training for end of life care. I watch most things on catch up too.
I hope your husband is not too restless.
Unfortunately, he is! Here I am 2.30 just mopped the bathroom floor. Found him struggling to remove his wet inco pants! He is now backin bed fast asleep!
I am not, of course.
 

AliceA

Registered User
May 27, 2016
2,911
0
Unfortunately, he is! Here I am 2.30 just mopped the bathroom floor. Found him struggling to remove his wet inco pants! He is now backin bed fast asleep!
I am not, of course.

This is really tough for you. I hope you get some catch up. Some months back I tried some free sleep apps, then the other night I tried OM chanting. It is 6.30 I am just having some quiet time on here before I face the day. Xxx
 
Last edited:

Lady M

Registered User
Sep 15, 2018
298
0
Essex
This is really tough for you. I hope you get some catch up. Some months back I tried some free sleep apps, then the other night I tried OM chanting. It is 6.30 I am just having some quiet time on hear before I face the day. Xxx
Thank you ! Like many others so glad I found TP.
Memory nurse on Home Visit tomorrow, so I expect OH in full hosting mode..
Just another day in Paradise!!
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Thank you ! Like many others so glad I found TP.
Memory nurse on Home Visit tomorrow, so I expect OH in full hosting mode..
Just another day in Paradise!!
My OH is a life long church chorister - he gave it up a few years ago as he could not fit rehearsals into his new job demands.
With encouragement, he has now joined a local group and they are very impressed with both his voice and his ability to sight read music.

My ex husband is now telling my adult children that things 'can't be that bad' if my OH is singing Mozart's Requiem !

But as you all know on here - things are very bad indeed. This guy who can no longer read a book but can still sight read music - now there is one of the conundrum's of dementia !!
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
My OH is a life long church chorister - he gave it up a few years ago as he could not fit rehearsals into his new job demands.
With encouragement, he has now joined a local group and they are very impressed with both his voice and his ability to sight read music.

My ex husband is now telling my adult children that things 'can't be that bad' if my OH is singing Mozart's Requiem !

But as you all know on here - things are very bad indeed. This guy who can no longer read a book but can still sight read music - now there is one of the conundrum's of dementia !!

My OH, (with FTD) who has been playing drum kit in bands for 60 years, was still playing until last Autumn when he found the palaver of transporting and setting up the full kit too much for him. His Consultant explained that musical ability resides in a different, more primitive, part of the brain, more akin to Muscle Memory. He said that it would be the last faculty to disappear.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
My OH, (with FTD) who has been playing drum kit in bands for 60 years, was still playing until last Autumn when he found the palaver of transporting and setting up the full kit too much for him. His Consultant explained that musical ability resides in a different, more primitive, part of the brain, more akin to Muscle Memory. He said that it would be the last faculty to disappear.
Yes, Ive heard that too. Thats why people who cant speak coherently can still sing the words to songs.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Did any of you see the programme by Kevin Fong a consultant anaesthetist on BBC2 last Wednesday 'We need to talk about death.' ?
It was very sensitively produced, he said although they could do so much medically the question was should they? Of course, the conditions were more physical but he said the treatments could cause more harm than good palliative care given early enough. The doctors involved all agreed that in many cases this did not shorten life but it gave better quality. This was a reference to cancer patients especially.
It stressed the need for us all to be more open about death in general. Especially in what we want for our selves.

Dementia often comes with other conditions, so wishes are not so clear cut. The importance that we tackle this early enough is apparent, it is also apparent that people do not.
I have just been reading a book of Elizabeth Kubler Ross's lectures complied after her death. She always spoke of 'unfinished' business. How important that the person who is ill is helped with any issues in their life.
So many cling on to life because of these.
She also suggests that Carers should make sure that they too deal with their unfinished business otherwise they project their own needs on the person in their care. This is aimed at doctors too, she reckoned this caused burn out.
(Physical burn out is something else)

I am a bit lost at this point but I do wonder if in the early stages of diagnosis, counselling was offered as a cost effective way of easing people into a new and frightening situation. Many behaviours in life are reactions to fear.
No less when we find ourselves in a strange country of brain illnesses with little knowledge, experience and a society in denial. The hours Carers work, are on call, surely contravenes the Slave Act. It is not help by lack of support, a lack of a listening ear, a lack of respite. I can hear the cry of Funding but look after the pennies and the pounds look after theirselves. (I could get political with a small p now but I will not!)
I do read of so many heartbreaking stories on here and there seems scant support in the society surrounding them.
So true about the slave act and the hours carers work. As I see it, not that long ago we were surrounded by big institutions into which people who had lost their minds were placed (and they were not all bad, the ones I visited as a student were pretty good). Then we had care in the community and they were placed in staffed half way homes, and they were closed and now, in thousands of homes, we are the unpaid staff containing and appeasing people who have lost their minds. And more dementia units are being built, replacing the big institutions ... No, this perspective doesn't help, but I would so love a chance to raise it politically ... Love Kindred.xx
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Did any of you see the programme by Kevin Fong a consultant anaesthetist on BBC2 last Wednesday 'We need to talk about death.' ?
It was very sensitively produced, he said although they could do so much medically the question was should they? Of course, the conditions were more physical but he said the treatments could cause more harm than good palliative care given early enough. The doctors involved all agreed that in many cases this did not shorten life but it gave better quality. This was a reference to cancer patients especially.
It stressed the need for us all to be more open about death in general. Especially in what we want for our selves.

Dementia often comes with other conditions, so wishes are not so clear cut. The importance that we tackle this early enough is apparent, it is also apparent that people do not.
I have just been reading a book of Elizabeth Kubler Ross's lectures complied after her death. She always spoke of 'unfinished' business. How important that the person who is ill is helped with any issues in their life.
So many cling on to life because of these.
She also suggests that Carers should make sure that they too deal with their unfinished business otherwise they project their own needs on the person in their care. This is aimed at doctors too, she reckoned this caused burn out.
(Physical burn out is something else)

I am a bit lost at this point but I do wonder if in the early stages of diagnosis, counselling was offered as a cost effective way of easing people into a new and frightening situation. Many behaviours in life are reactions to fear.
No less when we find ourselves in a strange country of brain illnesses with little knowledge, experience and a society in denial. The hours Carers work, are on call, surely contravenes the Slave Act. It is not help by lack of support, a lack of a listening ear, a lack of respite. I can hear the cry of Funding but look after the pennies and the pounds look after theirselves. (I could get political with a small p now but I will not!)
I do read of so many heartbreaking stories on here and there seems scant support in the society surrounding them.

Yes @AliceA I watched it last night and I was particularly struck by the doctor who said 'we must stop wasting patients time' as that sentence rang true to me. My dad has been on palliative care for nine months now for his oesophageal cancer. He has been very well and pain free. He has had a couple of stents fitted so that he can eat and he eats well. No chemo, no radiotherapy. It was the best decision his oncologist could have made. He is happy and has far exceeded the time we expected him to have. She said they could not cure him and treatment would probably make him ill. At his last appointment she said that he was the perfect advert for non aggressive treatment for the elderly. I am thankful to her as it could have been so much worse.

Sadly dad is now in hospital recovering from pneumonia which seems to have advanced his dementia and it is possible that he may not be able to return home but I am very glad that he has had the last nine ,months of being happy and well.
 

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