My husband is 54 and diagnosed at 51. I am not the most patient and tolerant of people and have also wondered what will happen when the situation gets worse. As time goes by I think I have become more understanding of the illness. I still get cross but have learned to control it. When something happens that you haven't experienced before you get frustrated. When it happens time after time I think you learn to cope more with it and I think this is what will happen when things get worse. I thought I would never be able to help my husband when he doesn't remember to wipe after going to the toilet but I have and now I cope with it. TP is invaluable for help and information so keep looking and posting. There is always someone that will offer advice through their experiences.
Margherita's diary
- Thread starter margherita
- Start date
My husband was diagnosed 3 years ago with Alzheimer's last summer was horrendous he became very verbally abusive and aggressive, I tried to hide this from the family.....not wanting to worry them, but he finally had an outburst when my daughter and granddaughter were here and terrified them, although he does still have his moments I think I have learned how to manage and recognise triggers and this has reduced any aggression dramatically, it helps that now after a short time he has forgotten what he is angry about and it is easier to distract him. It is all a steep learning curve and exhausting but worth it if you can make any part of this easier for you.
Alison, thanks for what you have written
Very helpful
In particular when you say "" As time goes by I have become more understanding of the illness"
I am starting, thanks to all of you of TP, to become more understanding of the illness.
Maybe if I know more of Alzheimer's, I will be able to understand my husband's behaviour better and be less frustrated and intolerant.
Hi Susi!
You "have learned to manage and recognize triggers"
I have realized I can't contradict him. But the problem is that he thinks I am contradicting him whenever I slightly disagree with him.
What shall I do? Shall I give up speaking ?
Other triggers in your experience?
How do you manage them?
Hi, I have learnt when he becomes stressed or tired this is a trigger, sometimes I just leave the room if I can see him beginning to get angry, I too do not contradict anything he says, I often just change the conversation...go off at a tangent this often works as then he will get distracted from what was making him upset, anxiety is a trigger if he is somewhere where there are a lot of people or loud background noise, if he needs the toilet when we are out and I can't find one quickly, I try to anticipate each morning what the day may bring so I am prepared but that is not always possible. I do also say sometimes I don't like to talk to you when you are shouting leave the room go outside or upstairs for a while and this helps both of us, I think sometimes he gets angry because he recognises how much he needs me, he only feels safe if I am around and keeping his life in a routine as he spins out of control if I am not there.
I had never connected anxiety to aggressiveness, another thing I have to take into consideration .
I am so unexperienced. When my husband showed the first signs of what would be later diagnosed as Alzheimer's, I started reading a lot about it in the internet , but here I can find the experience of the people who live the illness day by day
husband's son
Well, I must admit I detest him.
My husband has always had a bad relationship with his son or no relationship at all.
He is 47, occasional jobs, a wife he has just divorced, a 16-year-old son.
He lives 250 km away and seldom visits.
When he does, he asks for money
My husband used to say that his son is "as cold and false as his mother"
A few minutes ago , he phoned saying he'd like to come and see us
I'm furious, but I can only accept the situation.
I know he will try to take in his father..somehow..
Well, I must also admit that there are economic matters at stake.
When his father broke him the news (after eight years!) that we had got married, his son's only comment was : " So there will be someome to divide with"
His father's heredity, when he dies..
Well, I must admit I detest him.
My husband has always had a bad relationship with his son or no relationship at all.
He is 47, occasional jobs, a wife he has just divorced, a 16-year-old son.
He lives 250 km away and seldom visits.
When he does, he asks for money
My husband used to say that his son is "as cold and false as his mother"
A few minutes ago , he phoned saying he'd like to come and see us
I'm furious, but I can only accept the situation.
I know he will try to take in his father..somehow..
Well, I must also admit that there are economic matters at stake.
When his father broke him the news (after eight years!) that we had got married, his son's only comment was : " So there will be someome to divide with"
His father's heredity, when he dies..
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I've tried to calm down.
Being furious does not help either my husband or me.
Tonight I could not get to sleep
Anyway, I've made my decision.
It is no use trying to warn my husband. He won't understand
I'll be smiling (how difficult it is..) and kind to the unwelcome guests and try to prevent them from taking him in .
Being furious does not help either my husband or me.
Tonight I could not get to sleep
Anyway, I've made my decision.
It is no use trying to warn my husband. He won't understand
I'll be smiling (how difficult it is..) and kind to the unwelcome guests and try to prevent them from taking him in .
Cara Margherita - consider yourself lucky that you have found TP. I was also very lucky to have found TP. I am not English and do not live in England and TP was the best thing to have happened to me when my husband became ill with alz/dem. I don't want to sound too gloomy, but it will not make much difference whether you live in the city or in the country. They withdraw so much into their own world ! Internet can give you a lot of information about the illness but nothing beats what you can get on this site. Not even doctors can provide you with real help; most of them don't have a clue; I had help from here even in the middle of the night when I was at my wit's end!
I have just discovered your thread and been reading through all the comments. You can get so much of what you need from all the care givers here. I would read all the threads and at times it was scary but as one of the care givers pointed out, not all of these behaviours happen to all persons with alz/dem. However I learnt a lot from their experience which did prepare me to be pro-active.
One thing that helped was accepting that his behaviour was conditioned by the illness, it was not him being nasty or unkind, so it needed an acknowledgement and acceptance. Something that helped after that was my knowledge of his background, so that I could tell what time frame he was in, which explained his behaviour, and that helped me to get along with him calmly. The factors I agree with wholeheartedly which have already been pointed out are: never disagree, and always distract. Their short term memory is so fragile, it's so easy to distract them. Mind you they can easily surprise you but then you can resort to what some people on here cleverly call 'love lies'. They do work
Just keep in mind that though memories fail, emotions don't. Keep on loving and the strength will come.And keep posting on TP - you will get all the help you need. xx xx In my prayers xx xx
I haven't written for some time, but I 've never stopped reading and often commenting on your experiences.
Here days go by in isolation and frustration (and my life with them) even though my husband is still quite "well".
He is still verbally aggressive whenever I dare to contradict him (which I try not to do)
He is frustrated and angry.
Yesterday another outburst of anger because he couln't find the corkscrew (which he had "hidden" in the cupboard where we keep his medicines)
When I asked him what I had done to make him so angry with me, he answered he was "angry with the world"
His son came to see him with his seventeen-year-old grandson on their annual visit.
Luckily they come once a year..
My husband and his son do not get on well. They never did.
He is an opportunist who is only waiting for his father to die and collect his share of inheritance.
My husband knows what I think of his son, which is not so different from what he himself does.
After the (un)pleasant visit, my husband has never again mentioned his son.
I wonder why..
Has he erased everything? Is it a conscious choice ?
I always ask him as few questions (on any subject) as possible.
I wait for him to tell me
I don't know if it is a good policy
For instance, we never speak of his illness. Yet there would be so much to say and so many decisions to make.
Here days go by in isolation and frustration (and my life with them) even though my husband is still quite "well".
He is still verbally aggressive whenever I dare to contradict him (which I try not to do)
He is frustrated and angry.
Yesterday another outburst of anger because he couln't find the corkscrew (which he had "hidden" in the cupboard where we keep his medicines)
When I asked him what I had done to make him so angry with me, he answered he was "angry with the world"
His son came to see him with his seventeen-year-old grandson on their annual visit.
Luckily they come once a year..
My husband and his son do not get on well. They never did.
He is an opportunist who is only waiting for his father to die and collect his share of inheritance.
My husband knows what I think of his son, which is not so different from what he himself does.
After the (un)pleasant visit, my husband has never again mentioned his son.
I wonder why..
Has he erased everything? Is it a conscious choice ?
I always ask him as few questions (on any subject) as possible.
I wait for him to tell me
I don't know if it is a good policy
For instance, we never speak of his illness. Yet there would be so much to say and so many decisions to make.
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Hello margherita
With my husband, I found the lack of discussion was due to the complexities of reasoning and logical thinking.
It was all too much for him.
He could pass a comment but not allow me to take it any further, or he could respond to my comment but be unwilling or unable to expand.
I`m sure this is part and parcel of dementia.
Your husband may be hurt by his son`s attitude but not realise it or even understand he is hurt. He will be puzzled .
With my husband, I found the lack of discussion was due to the complexities of reasoning and logical thinking.
It was all too much for him.
He could pass a comment but not allow me to take it any further, or he could respond to my comment but be unwilling or unable to expand.
I`m sure this is part and parcel of dementia.
Your husband may be hurt by his son`s attitude but not realise it or even understand he is hurt. He will be puzzled .
Grannie G, thank you!
Your remark is very useful and makes me see things from a different point of view
"I always ask him as few questions (on any subject) as possible.
I wait for him to tell me
I don't know if it is a good policy
For instance, we never speak of his illness. Yet there would be so much to say and so many decisions to make."
Margherita, I have just caught up with your story. My heart goes out to you. You are in the trickiest phase of this dreadful journey, where the PWD is in that in-between stage of believing they are still independent and capable, yet they lack insight into their condition so will not accept that they need help...it is so, so difficult to manage.
Just to reassure you, yes your policy IS a good one. Best not to ask questions if it can be avoided, as thinking and decision-making become too difficult for the PWD. If you do need to ask a question, try to keep it closed, e.g. "Would you like tea or coffee?" rather than "What would you like to drink?"
Sadly, the decisions about his illness will probably fall to you from now on, so perhaps it's a good thing not to discuss it with him, especially if it makes him angry. Unfortunately, I fear not being able to discuss things with him will only increase your sense of isolation. I feel bad writing this, but I do so with the kindest intention of helping you to come to terms with your situation. I hope I have not upset you, and I apologise if I have.
It's very difficult to predict how your journey will develop over time, because everyone's experience of this dreadful disease is different. It's also evident that not everyone experiences all aspects of the illness. I will tell you my story as briefly as I can, just to illustrate how unpredictable things can be.
Not so long ago, I was also in what seemed to be an impossible and interminable situation. I was caring for both my parents-in-law in their own home. They had both developed dementia at the same time and were deteriorating in different ways, but (apart from FIL's mobility issues) they seemed quite well physically. I was convinced at one stage that they would outlive me! Neither of them believed they had the illness, nor did they understand each other's condition. In their own minds they were perfectly OK! FIL was reasonably compliant, but MIL was highly resistant to ANY attempts to care for her.
Last year, things came to a head when FIL needed a minor operation to repair a hernia. A couple of weeks after the operation, he contracted sepsis and died in hospital. MIL then deteriorated very quickly as a result of the stress and grief, to the point where she became a danger to herself and to others. A few weeks after he died, she was admitted to a care home, and has stayed there ever since. The transition was drastic and shocking for the whole family, but in one sense we were lucky in that we were spared the agonies of trying out different 'solutions' (such as day centres, more care visits or respite care) that ultimately would not have worked.
I wish you well, Margherita, and please keep us updated with your news.
I wait for him to tell me
I don't know if it is a good policy
For instance, we never speak of his illness. Yet there would be so much to say and so many decisions to make."
Margherita, I have just caught up with your story. My heart goes out to you. You are in the trickiest phase of this dreadful journey, where the PWD is in that in-between stage of believing they are still independent and capable, yet they lack insight into their condition so will not accept that they need help...it is so, so difficult to manage.
Just to reassure you, yes your policy IS a good one. Best not to ask questions if it can be avoided, as thinking and decision-making become too difficult for the PWD. If you do need to ask a question, try to keep it closed, e.g. "Would you like tea or coffee?" rather than "What would you like to drink?"
Sadly, the decisions about his illness will probably fall to you from now on, so perhaps it's a good thing not to discuss it with him, especially if it makes him angry. Unfortunately, I fear not being able to discuss things with him will only increase your sense of isolation. I feel bad writing this, but I do so with the kindest intention of helping you to come to terms with your situation. I hope I have not upset you, and I apologise if I have.
It's very difficult to predict how your journey will develop over time, because everyone's experience of this dreadful disease is different. It's also evident that not everyone experiences all aspects of the illness. I will tell you my story as briefly as I can, just to illustrate how unpredictable things can be.
Not so long ago, I was also in what seemed to be an impossible and interminable situation. I was caring for both my parents-in-law in their own home. They had both developed dementia at the same time and were deteriorating in different ways, but (apart from FIL's mobility issues) they seemed quite well physically. I was convinced at one stage that they would outlive me! Neither of them believed they had the illness, nor did they understand each other's condition. In their own minds they were perfectly OK! FIL was reasonably compliant, but MIL was highly resistant to ANY attempts to care for her.
Last year, things came to a head when FIL needed a minor operation to repair a hernia. A couple of weeks after the operation, he contracted sepsis and died in hospital. MIL then deteriorated very quickly as a result of the stress and grief, to the point where she became a danger to herself and to others. A few weeks after he died, she was admitted to a care home, and has stayed there ever since. The transition was drastic and shocking for the whole family, but in one sense we were lucky in that we were spared the agonies of trying out different 'solutions' (such as day centres, more care visits or respite care) that ultimately would not have worked.
I wish you well, Margherita, and please keep us updated with your news.
I will add my welcome to you. I live in Switzerland. I have been getting support and advice from Talking Point since 2011 when I found this sight.
Welcome to the group. It is a good place to vent and rant and hear how others manage and live their lives while doing their best to support their partners with the disease which can be a long and sad process. The key for me has been to find moments of joy. Some days are better than others. At the moment I am vacationing at Lago Maggiore near Laveno, Italy.
Welcome to the group. It is a good place to vent and rant and hear how others manage and live their lives while doing their best to support their partners with the disease which can be a long and sad process. The key for me has been to find moments of joy. Some days are better than others. At the moment I am vacationing at Lago Maggiore near Laveno, Italy.
Hallo Caqqufa and thanks for your reply.
I agree that it doesn't make much difference whether I live in the city or in the country.
The country is likely to be better when (not if..) my husband gets worse.
We have a huge garden and a comfortable house where he likes to stay doing some gardening or small do-it-yourself
Doctors do not provide real help. You are right, I' m afraid. My family doctor seems to know very little about dementia. He has turned down the neurologist's request for a PET SCAN. He says it is useless..
Every six months my husband goes to what here we call U V A (Unit for eValuation of Alzheimer)
They give him the usual test and do nothing else. The score has been more or less the same for a year and a half , that is since the first time in March 2016. But I can see that his short term memory is getting worse and above all his ability to use his rational faculties. How can they say the situation is still? Only because he can remember what month we are in or say that a pen is a pen?
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Unwilling or unable?
You gave me a key to understand my husband's behaviour, both with me and other people.
For instance, two weeks ago my son came to visit ( I had not seen him since before Christmas) and noticed my husband was particularly silent and seldom took part in the conversation.
It was not unkind of him, but a consequence of his mental state
Is it possible he realized he could not understand and therefore chose not to talk ?
Thanks for writing your experience, from which I can learn
Two paragraphs of your reply have made me think more than the others.
"The trickiest phase", as you have called it.
I sometimes feel I am a wicked person because I find myself wishing for a change in my husband's situation.
Any change, even for the worse..
You don't have to apologize.
What for?
Keeping into contact with reality is the only way to cope with what will happen.
Here in Italy we say that the " ostrich policy" brings no good.
Ostrichs hide their heads under the sand when something scares them and feel safe
