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TIPPING POINT

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland
Hi @maryjoan, I know what that's like only too well.

On Friday night my wife and I had been out having a good enough evening and were just arriving home when I was the victim of a sudden rage that came out of nowhere and ended with me being told "If we were at home I'd leave you". Water off a ducks back to me as the sheer ridiculousness of the statement(she wouldn't last a day on her own) proved it was the dementia talking.

The first few times I heard statements like that it hurt but then I realised it was just an expression of some kind of anxiety when on one occasion I offered to pack her bags and drive her to her sons and she settled down in an instant.

In reality It's not that they want to go, but I find it hard to get to the bottom of the anxiety as my wife will go into a huff and won't talk. I just roll with it instead.

The best I can offer is a ((HUG)) and hope that things settle between you and in your own heart and mind.
 

Ruth1974

Registered User
Dec 26, 2018
108
A real Tipping Point today, a rather big milestone I think.

We had a slight disagreement earlier, very minor, when he refused to have a shower to keep a skin infection clean until we can see doctor....

He phoned his son, and said he did not want to be with me any longer, and fancied moving up to Derby - the practicalities are enormous- assumed, wrongly, that he could just live with his son ( who is in a 1 bedroomed flat).

Just feel quite hurt that he is thinking like this after all we have meant to each other, and all I have done for him.

But the truth is, of course, it is the dementia, isn't it - well, of course it is.

Mine announced that he planned to go back to work the other day. I haven't taken him abroad for a couple of years so he's going alone (yeah, good luck with that one). If they could see themselves as we do they would understand but they don't.
 

Ruth1974

Registered User
Dec 26, 2018
108
I get that a lot - wanting to be beck at work (he stopped working 11 years ago because of the Alzheimer’s) or wanting to travel. This is just so sad for him and frustrating for me. The anger associated with these moods has mostly gone now. But so difficult to live with such sadness and such loss of opportunity (for both of us) for so long. He is still only 62.
Yeah, mine has early onset. I smuggled the kids to Berlin for a couple of days in september to get a break from him. If he'd known he would have wanted to come but then freaked out in the airport...
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
Hi @maryjoan, I know what that's like only too well.

On Friday night my wife and I had been out having a good enough evening and were just arriving home when I was the victim of a sudden rage that came out of nowhere and ended with me being told "If we were at home I'd leave you". Water off a ducks back to me as the sheer ridiculousness of the statement(she wouldn't last a day on her own) proved it was the dementia talking.

The first few times I heard statements like that it hurt but then I realised it was just an expression of some kind of anxiety when on one occasion I offered to pack her bags and drive her to her sons and she settled down in an instant.

In reality It's not that they want to go, but I find it hard to get to the bottom of the anxiety as my wife will go into a huff and won't talk. I just roll with it instead.

The best I can offer is a ((HUG)) and hope that things settle between you and in your own heart and mind.

Thankyou @karaokePete, your words make total sense to me. I get so much support from you and others on here, that it keeps me more or less sane.
I dare anyone out there in the real world, to tell me that dementia is 'just a little loss of memory' - I will jolly well give them what for!!!
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
I get that a lot - wanting to be beck at work (he stopped working 11 years ago because of the Alzheimer’s) or wanting to travel. This is just so sad for him and frustrating for me. The anger associated with these moods has mostly gone now. But so difficult to live with such sadness and such loss of opportunity (for both of us) for so long. He is still only 62.
Only 62 - that is terrible, and to have had it for 11 years. I feel for you. My OH has had it for, I guess, about 5 years, and he is now 72. The loss of opportunity resounds with me though, as I have lost my hard won business and career. That might sounds heartless, but I loved my work so much, and meeting people - now I hardly ever talk to anyone.....
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
The patience and understanding shown by you all is amazing. I would like to learn but I feel doubtful it will happen. The abuse has been bad this weekend. The last couple of nights the bedtime pantomime has reduced me to tears. Sometimes I am on the edge of giving up altogether.
 

PalSal

Registered User
Dec 4, 2011
901
Pratteln Switzerland
You’re right. Clean is good. Clean is civilised. I feel good when my husband is washed shaved and smartly dressed.
Totally with you on this. I once had difference of opinion with someone here on this site, as I shared I was making my husband dress appropriately for various occasions. They thought it unfair of me to make him wear certain clothes. I still work hard to keep him clean and presentable, I think people relate to him better when he is shaven, clean and dressed beautifully and he is still agreeable to wearing what I pick out for him. Just what we have done, we will adjust when the time comes , but we are still managing to dress him beautifully and comfortably. It is important to me ….so it is important. He was a handsome dashing man and always looked well...I try to get as close to that state as possible.
 

Ruth1974

Registered User
Dec 26, 2018
108
If you had a partner who did not have dementia but who bullied, threatened, victimised and humiliated you, who alienated you from family and friends etc that would be domestic abuse and no one would expect you to just shut up and get on with it.

Although the reason for these behaviours is different and we understand that our loved ones don't mean it, the impact on us both physically and emotionally is very similar.

I would blame no one for reaching the point where they have to accept that they can no longer live like this.
 

maryjoan

Registered User
Mar 25, 2017
1,441
South of the Border
If you had a partner who did not have dementia but who bullied, threatened, victimised and humiliated you, who alienated you from family and friends etc that would be domestic abuse and no one would expect you to just shut up and get on with it.

Although the reason for these behaviours is different and we understand that our loved ones don't mean it, the impact on us both physically and emotionally is very similar.

I would blame no one for reaching the point where they have to accept that they can no longer live like this.
You have put into words exactly what has been drifting around in my head, with me unable to get a handle on it - you are exactly correct - and I think apart from our own community on here, and on similar forums, no one else really understands. Not family, not friends, not professionals..... thank you for putting into words what I could not.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,813
69
Dundee

Martarita

Registered User
May 11, 2018
112
Hi @maryjoan, I know what that's like only too well.

On Friday night my wife and I had been out having a good enough evening and were just arriving home when I was the victim of a sudden rage that came out of nowhere and ended with me being told "If we were at home I'd leave you". Water off a ducks back to me as the sheer ridiculousness of the statement(she wouldn't last a day on her own) proved it was the dementia talking.

The first few times I heard statements like that it hurt but then I realised it was just an expression of some kind of anxiety when on one occasion I offered to pack her bags and drive her to her sons and she settled down in an instant.

In reality It's not that they want to go, but I find it hard to get to the bottom of the anxiety as my wife will go into a huff and won't talk. I just roll with it instead.

The best I can offer is a ((HUG)) and hope that things settle between you and in your own heart and mind.
Hi Pete when reading your reply something similar happened to me only my OH said he thinks he'll start driving again!! Mm , I too don't think so ,he also asked if we where married yes I said for 50 years OMG was his reply it's so sad he can't remember our wedding day .but it's like you've said its the dementia.that make our loved one like that ,thank you for being there for all of us .Take Care.x
 

Ruth1974

Registered User
Dec 26, 2018
108
You have put into words exactly what has been drifting around in my head, with me unable to get a handle on it - you are exactly correct - and I think apart from our own community on here, and on similar forums, no one else really understands. Not family, not friends, not professionals..... thank you for putting into words what I could not.
 

Dutchman

Registered User
May 26, 2017
767
Devon
I am going to sound very unsympathetic as if I do not understand at all.
I have found from a long life of ups and downs that wishing things to be different is like constantly picking a scab and wondering why it still hurts.
Expecting things to be different will not change a thing.
Communication is not verbal but emotional if we are wanting other things, another life, this is conveyed emotionally especially when one is in a close relationship.
Children before speech tap into to our moods, this happens with brain conditions too.
So our dissatisfaction can cause unformed dissatisfaction in the other and it affects their mood so spirals into an emotion that they can form.

This is why it is important we care for ourselves, that we do what we can when we can.
Society expects rights, nothing wrong in that per say. The problem seems to be on a personal level when we set up unattainable expectations.
We have to either get out of the situation and bear the consequences of that decision, remembering problems seem to go with us.
Or we stay, if we stay we have to accept the consequences of that too.

I am certainly not offering that there there is an easy answer. We all have to struggle with this, it hurts me to see people damaging theirself more than needed. In past we would have enjoyed the Christsmas lectures, last night tire out we watched the Midnight Club!

We used to have a saying about making the best out of a bad job.
Perhaps that will get us through, rather like instead of crying for the moon we enjoy a balloon on a string.
On Christmas Day I spoke to a friend, her husband suddenly died a couple of years ago about this time.
She said she was grateful she did not have to care and felt sorry for those who do.She could concentrate on her own needs but she missed her husband to bits. Another friend said she missed just holding hands.
This is our dilemma, I am grateful I still have mine, I hope to keep mine close. I do not expect because it put me in a more vulnerable position than I am in now.

Maryjoan had a good answer in why me - why not?
Much of what I write is a reminder to myself.
This is my actual life, do not make it more difficult than it is.
Just a diary message to those out there as my day has been dreadful and very upsetting. My wife woke this morning, looked at me and didn’t know me. So it begins! She was certain that another man was in the home doing what I do....Hoover, drive, go for walks when he can, speaking as though I was just an acquaintance. No amount of persuasion would shift her and she remembers nothing of our married life until I showed her some pictures. So happy new year! I wonder now how quickly the deterioration will be, whether we’ll see in next Christmas and how quickly I should make preparations for the inevitable. I sometimes wonder if the gradual move into vacancy gets you used to being alone. Are these terrible thoughts? I’m really no good at this and I’m not one of those who can be stoic and brave it out. I think of myself all the time and what’ll happen when I’m on my own. Is that too dreadful? I admire those who have all the positive care that give and keep giving.
Y
 

kindred

Registered User
Apr 8, 2018
2,492
Just a diary message to those out there as my day has been dreadful and very upsetting. My wife woke this morning, looked at me and didn’t know me. So it begins! She was certain that another man was in the home doing what I do....Hoover, drive, go for walks when he can, speaking as though I was just an acquaintance. No amount of persuasion would shift her and she remembers nothing of our married life until I showed her some pictures. So happy new year! I wonder now how quickly the deterioration will be, whether we’ll see in next Christmas and how quickly I should make preparations for the inevitable. I sometimes wonder if the gradual move into vacancy gets you used to being alone. Are these terrible thoughts? I’m really no good at this and I’m not one of those who can be stoic and brave it out. I think of myself all the time and what’ll happen when I’m on my own. Is that too dreadful? I admire those who have all the positive care that give and keep giving.
Y
Dutchman, this may not be a lasting state. Lots of residents at Keith's nursing home shift in and out of this position. I know how painful and distressing it is and am so sorry. No of course these are not terrible thoughts, they are human and normal. As for the move into vacancy getting you used to being alone, I'm not sure. A friend who had looked after her husband with vascular for twelve years said to me that it gives you a head start on being a widow, not the awful shock of the sudden absence. I don't know what I think of that. Of course thinking about yourself is not dreadful, most of us who have had a good married life dread being alone. As Keith is in a nursing home now, I spend a lot of time alone. I cope by seeing lots of people and then being in the home and helping as one of the team. So when I come home I am pretty exhausted anyway.
All fellow feeling, dutchman. I don't think many of us can be stoic and brave it out. That's just a bit of a front.
with warmest wishes, thoughts, Kindred.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,228
England
For the last two years my husband was at home he neither knew me or our home. There were then four further years when he was in his nursing home when I was not recognised as his wife.

Although I was not his wife he was happy to stay with me while he’s waited for his wife to pick him up and he would go out with me. The fact he accepted me was good enough for me. I was never going to change it. It was hard and upsetting for me but he must have been devastated to find himself in a place he did not know with someone who was a stranger and no matter what I told him I knew he would never get his wife back. Dementia is a thief that never stops taking until everything has gone.
 

AliceA

Registered User
May 27, 2016
2,856
Dear Dutchman, how terrible for you, it must be devastating for you. Let's hope it is a blip, an infection perhaps. When my husband was very ill he did not seem to register me, I just felt I was someone else disturbing him.
Yes, of course we think of ourself, how we will manage emotionally. I try not to as there is no profit in it, but that is my head speaking, my heart grieves, the smallest thing uplifts me, the smallest thing can trip me.
Whether we give care hands on or travel to a home whatever the weather or how we feel, either way it is exhausting.
I have learned over the years, to find ways to cope, to find ways of making decisions we used to share without being disloyal.
Whatever role you have to take on, you must care for yourself, to think of yourself.
I hope things get better.
 

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland
Last Summer my wife asked me who I was a few times - even waking me in the middle of the night to ask me on two occasions. On other occasions she has asked me if I’m David or called me mummy or daddy.

Most of these occasions coincide with short periods of increased confusion and they don’t last. It’s as if her brain is going through a computer like reboot so not working properly for a while. I don’t let it ruffle me and always assume that it’s just another little bit of brain being lost and the signals being rerouted.