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TIPPING POINT

canary

Registered User
Feb 25, 2014
12,189
South coast
I’m watching tv and these lovely teenagers are helping out with dementia sufferers (DS) mostly in a home. They are heart broken and one was in tears at the way the DS are responding, the way they smile and become less vacant with the interaction
Call me cynical, but Id lay money on what these teenagers are seeing and the response to interaction is Host/Hostess mode.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
Hi Alice A

I’m watching tv and these lovely teenagers are helping out with dementia sufferers (DS) mostly in a home. They are heart broken and one was in tears at the way the DS are responding, the way they smile and become less vacant with the interaction . I suppose what I’m thinking is when dementia is experienced in controlled bits and you’re given the opportunity to help there is an element of detachment knowing your not completely enveloped in it like we are. I’ve tried being kind as I’m sure it would help my day to day caring but kindness is hard when faced with all dementia throws at you. Oh, how I wish I could be kinder. I’ve also thought that my love for my OH has disappeared and when it started to be eroded. Probably when she began to be aggressive, shouting, hitting, throwing stuff. Now it’s the inability to communicate and have a meaningful conversation, to not be able to help with any household stuff. She’s forgetting our friends and family. Was I really married before she says. Yes I say, I’m not your children’s dad. Vacant look. I’m becoming a cynical and hard hearted and I don’t want to be.
I was only thinking this morning after a very trying evening that it’s very hard to keep the love when your partner is behaving in a way which I can only describe as demented. We celebrate our 54th wedding anniversary next month and the other day he said that we have been married a long time, and was it 1940? I died another tiny death and there have been several of those recently.
 

kindred

Registered User
Apr 8, 2018
2,412
I was only thinking this morning after a very trying evening that it’s very hard to keep the love when your partner is behaving in a way which I can only describe as demented. We celebrate our 54th wedding anniversary next month and the other day he said that we have been married a long time, and was it 1940? I died another tiny death and there have been several of those recently.
Yes, because what or who are we loving? I am sorry you went through that. Keith told me that I was dead and he had been to my funeral. Surreal. Gxxwith love.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
Call me cynical, but Id lay money on what these teenagers are seeing and the response to interaction is Host/Hostess mode.
No not cynical, realistic. Today we went out to lunch and someone asked him if he was still playing golf. No he said, my partners all stopped playing and I didn’t want to play alone. He looked and sounded so rational but it is all quite incorrect. It took my breath away that he could think quickly enough to say that untruth, but now he is quite exhausted.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
Yes, because what or who are we loving? I am sorry you went through that. Keith told me that I was dead and he had been to my funeral. Surreal. Gxxwith love.
I know what you have been through and you deserve this happy time with your blue eyed boy and loving him again. I was only discussing with my daughter that it is us who have to bear the burden of the knowledge of what they and we have lost because they have lost it all.
 

kindred

Registered User
Apr 8, 2018
2,412
Call me cynical, but Id lay money on what these teenagers are seeing and the response to interaction is Host/Hostess mode.
And of course, I see a lot of this in Keith's nursing home: afterwards the person with dementia just falls apart with exhaustion and changing mood!
Gx
 

kindred

Registered User
Apr 8, 2018
2,412
I know what you have been through and you deserve this happy time with your blue eyed boy and loving him again. I was only discussing with my daughter that it is us who have to bear the burden of the knowledge of what they and we have lost because they have lost it all.
Yes, the emotional load of caring is enormous, enormous. I keep telling myself that grief is normal, grief is normal and that enables me to carry on. Thank you so much. Gxxx
 

jenniferjean

Registered User
Apr 2, 2016
739
Basingstoke, Hampshire
Oh, how I wish I could be kinder. I’ve also thought that my love for my OH has disappeared and when it started to be eroded.
I too wish I could be kinder, it's hard. I do try but sometimes I loose it and then I hate myself afterwards.
As to love, I think I do still love him but it's a different kind of love, more like the love you have for your children.
 

kindred

Registered User
Apr 8, 2018
2,412
I too wish I could be kinder, it's hard. I do try but sometimes I loose it and then I hate myself afterwards.
As to love, I think I do still love him but it's a different kind of love, more like the love you have for your children.
Oh that is so poignant and interesting. Thank you. I love Keith now like we were students at Uni again, he even looks like he looked then. with love, Kindred.x
 

One Moment At A Time

Registered User
Jan 4, 2019
44
Puerto Rico
Hi, I know it's not easy, I have learned not to say "why me?, I try my best to have an attitude of thanks giving, no matter my daily issues I thank my Higher Power for been alive for "today & now", having a wonderful wife, two group children & two Tresures [grandsons 8 & 10 yrs., old] I sought medical profesional help, I'm medicated, yes at times I have mood swings, feell depress, anxious & at times irritated, due to the that I can't remember certain things), ", I know there come a time when I'll have to turn over my car's keys & money matters to my wife -- "what doesn't kill me & my beloved wife makes us more Stronger", it is vital for caregivers to have some sort of "an excape volve", if it is humanly possible beeing relieved, "change radio stations" -- do what gives you joy --- gardening, go on walk, to the "Temple" of your choosing, play bingo, casino, to the mall .... .", in closing I like to share a blessing my wife & I had last night, my wife & I went to a "Relious Service" after it ended we attended a prayer meeting at a friend's home along with other friends & afterwards we had a late dinner, may the Higher Power of your understanding instill in your inner self HIS peace / calmnes & wiisdom, be safe & lots of blessings -- One Moment At A Time.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
There is an article in one paper today entitled ‘Marriage secrets of the forever couples’. This did make me feel a bit cynical about the easy smug image projected, and there was an impossibly glamorous couple illustrating this, and I couldn’t help thinking, not with dementia can you feel successful when you are starting to think what a nightmare this is. In fact on scrolling down the article with happy couples before and now I mourn for what I no longer have. I don’t feel bitter, it’s one of life’s blows which you have to bear. I have it much easier than many, but that doesn’t make it easier for me.
 

AliceA

Registered User
May 27, 2016
2,808
Hi Alice A

I’m watching tv and these lovely teenagers are helping out with dementia sufferers (DS) mostly in a home. They are heart broken and one was in tears at the way the DS are responding, the way they smile and become less vacant with the interaction . I suppose what I’m thinking is when dementia is experienced in controlled bits and you’re given the opportunity to help there is an element of detachment knowing your not completely enveloped in it like we are. I’ve tried being kind as I’m sure it would help my day to day caring but kindness is hard when faced with all dementia throws at you. Oh, how I wish I could be kinder. I’ve also thought that my love for my OH has disappeared and when it started to be eroded. Probably when she began to be aggressive, shouting, hitting, throwing stuff. Now it’s the inability to communicate and have a meaningful conversation, to not be able to help with any household stuff. She’s forgetting our friends and family. Was I really married before she says. Yes I say, I’m not your children’s dad. Vacant look. I’m becoming a cynical and hard hearted and I don’t want to be.
You are trying to protect yourself, you must be kind to notice when you are not.
Just try to self care more, cut out things that are more trouble than they are worth. I am sure the love is there but when overtired it can get a big thin.
Our gt. Grandson is on work placement on a care home/nursery sessions. He says the results are amazing.
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
My Tipping Point today....

About 14 months ago, my OH's son, came to stop here so I could have a break. He is a lovely fellow and I am very fond of him. He is also a recovering alcoholic who has turned his life around completely.
14 months ago, I explained to OH that when his son came down, we had to make sure there was no alcohol in the house - I don't drink anyway. OH agreed wholeheartedly and said that we must not put temptation in the way of his son.

On Thursday, OH's son is coming down again till Sunday, so I can go and see my family up north. I reminded OH that his wine etc would need to be put out of sight in his bedroom. This time he looked at me completely blankly and asked why. I explained and he huffed and puffed and I asked him what the difficulty was - and he glared at me. I pushed it further saying how just one drink could push his son back over the edge - he did not understand, but finally agreed to 'think about it' - which means he will forget.

What a difference in 14 months!!

Also

Got the letter today from the Dr. regarding a reduction in Council Tax because of the dementia.
It was brief - it said "........ has severe dementia and is completely unable to live alone independently" It brought home to me where we are with all this!
 

Duggies-girl

Registered User
Sep 6, 2017
1,850
I think dads had SMI on it. I told him that it was because he had been ill and he accepted that. No memory of it now anyway.
 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
Over the last couple of weeks, I have come to realise that it doesn't matter what I would like to share with him - opinions, thoughts, cares, news, cheer, - he simply is not interested.
So I have stopped telling him things
That is not to protect him in any way, but because telling him anything is such a waste of time that it is hurtful.
So, I tell my daughter instead, or just keep it to myself.
it's almost 7am, time to make his coffee which must arrive at 7.am or he asks if I have gone on strike - well this person I live with does - it's not the same person I fell in love with................. thankfully, he doesn't realise
 

AliceA

Registered User
May 27, 2016
2,808
This the harsh reality, isn't it, MaryJoan, but once we remember more often and find a different way it helps to stop hurting a bit.
Of course we forget, go to share, hit a wall and feel bruised all over again.

The words 'self actualisation' just came to mind. I remembered this from my study days. I feel to survive caring and remain a whole person we have to work towards that.
You are certainly working towards that with your writing.

Maslow wrote in 1954 about a hierarchy of needs, Basic needs = food, fluid and oxygen. Safety = protection from harm.
Relationships = giving and receiving love.
Esteem = self and from others.
Then the fifth Self actualisation. This is what Carers are catapulted into needing whether they realise it or not. Many work through it without having heard of the actual labels.
We are all, as Carers, honing these abilities. These are our survival tools
Maslow lists about 10/12 we could perhaps add more!

Tolerance of uncertainty, objectivity, humour, acceptance, ability to look outside self to the problems of the wider world, resisting pressure,
self-reliance, interpersonal relationships, appreciation of nature and everyday things. Social issues and welfare of others. Creavity and experimenting with new approaches. I have to smile at this point, all the things we Carers need in buckets!
Knowing your interests the final one is about the transcendence.

I remember too a talk by a psychologist about love, he spoke about fully present with the person you are with in every situation.
I suppose this is what mindfulness is about.

The brain is such a mystery, last night my husband announced he would not disturb me when he woke up, having not been very thoughtful about this recently. It is as if the thought has been blocked but has now found a new pathway. Let's hope this new pathway stays un blocked! I need my sleep!

I am really looking forward to your written work, who knows where it will lead. Alice, xxx

 

maryjoan

Registered User
Mar 25, 2017
1,405
South of the Border
This the harsh reality, isn't it, MaryJoan, but once we remember more often and find a different way it helps to stop hurting a bit.
Of course we forget, go to share, hit a wall and feel bruised all over again.

The words 'self actualisation' just came to mind. I remembered this from my study days. I feel to survive caring and remain a whole person we have to work towards that.
You are certainly working towards that with your writing.

Maslow wrote in 1954 about a hierarchy of needs, Basic needs = food, fluid and oxygen. Safety = protection from harm.
Relationships = giving and receiving love.
Esteem = self and from others.
Then the fifth Self actualisation. This is what Carers are catapulted into needing whether they realise it or not. Many work through it without having heard of the actual labels.
We are all, as Carers, honing these abilities. These are our survival tools
Maslow lists about 10/12 we could perhaps add more!

Tolerance of uncertainty, objectivity, humour, acceptance, ability to look outside self to the problems of the wider world, resisting pressure,
self-reliance, interpersonal relationships, appreciation of nature and everyday things. Social issues and welfare of others. Creavity and experimenting with new approaches. I have to smile at this point, all the things we Carers need in buckets!
Knowing your interests the final one is about the transcendence.

I remember too a talk by a psychologist about love, he spoke about fully present with the person you are with in every situation.
I suppose this is what mindfulness is about.

The brain is such a mystery, last night my husband announced he would not disturb me when he woke up, having not been very thoughtful about this recently. It is as if the thought has been blocked but has now found a new pathway. Let's hope this new pathway stays un blocked! I need my sleep!

I am really looking forward to your written work, who knows where it will lead. Alice, xxx
Who knows indeed, Alice. I have to wait till March to see the first attempts!!
I see what you mean as above. We, as carers, have to look not just outside the box, but totally beyond the box. Nothing that has gone before can prepare us for this weird unreality of our lives as they are now.
I bumped into a one time friend, whom I had not spoken with for many years, she knew me in my first marriage, possibly knew about my abusive second marriage ( but poss not). OH was with me when we bumped into each other, and she looked rather questioningly at him - he wondered off to take some photos, always rather bad ones, and I explained he had dementia. Her retort was a chuckle and " You don't have much luck with men, do you?" She is correct of course.

I dreamed last night that I did have someone who loved me. Me, old as I am, It was wonderful to be actually spoken to, smiled at, and hugged....then I woke up!!
 

canary

Registered User
Feb 25, 2014
12,189
South coast
Over the last couple of weeks, I have come to realise that it doesn't matter what I would like to share with him - opinions, thoughts, cares, news, cheer, - he simply is not interested.
This is the bit I find hardest too.
OH and I live parallel lives and I live in silence for hours (OH cant cope with the noise of a radio or music playing) as he cannot participate in a conversation anymore and often accuses me of trying to tell him what to think, or else he just ignores me. Its a lonely old life, isnt it? Not surprising that I spend way too much time on here.