How do you cope with the shock when a person you thought you knew suddenly urns on you?

[katydid]

hi. I am Cath, my husband 76 now was diagnosed with vascular dementia in 2014, although nobody told me until 2017
When he had a couple of strokes was the first time I had any discussion with medics.
The vascular disease has cost him his mobility and his continence. He is losing words and understanding, plus he is unable to process thoughts, words or directions/instructions, which leads to a great need for help
Being a senior nurse myself, I was shocked that,I had not seen this coming, although he has always been a bit of a sulker, he has always been a gentleman, and a bit of a prude in fact.
The last 18months or so have brought a typical evening dementia deterioriation, during the day, quietsleepy and willing to cooperate to an extent, but get,to 3.30 4pm. Change!,!!
He b comes completely lost, and quite suddenly so I am sittting reading, and I hear, what have you done that for? Looking blank or questioning brings further abuse, “you don’t care do you?” Who are you anyway. This is sometimes after a few more gentle comments, like “are we going now? “ And will often end with “who are you?
The worst though are the sudden insults even though I know it’s not really him, it hurts, I was until recently his only carer with a little help from my son, who,is himself disabled. We now have a shambolic agency care wrong times, girls -and I use the word advisedly, no training usually- who turn up with no knowledge of him of even his problem! He is not impressed and neither am I.
So to my question how do,you cope with that sudden thump in the heart?

 

[Jale]

Hello Cath,

I'm sure others will be along and offer advice, but from my point of view as a carer for my mum it has been very hard. Prior to mum being diagnosed with vascular dementia we always had a bit of a rollercoaster relationship but always managed to get over the problems. Once she was diagnosed I did my best to do right by her as did my hubby but the one who got all the praise was my brother who did next to nothing. We were accused so many times of not caring, not doing anything etc etc, I really wanted to walk away but I couldn't. I never could get used to it so many times when distraction tactics failed I had to walk out of the room, (very often to have a cry) and then go back in, sometimes mum had forgotten what had happened. It is so hard and I don't think there is an easy answer,

Do you have access to the Admiral Nurses in your area? If not I think you can still contact them and I hope that someone will be along to give a link (sorry rubbish at stuff like that). They may be able to help not only with ways to deal with situations but also with carers/care agency.

As for your care agency - can you contact your social worker and tell them of your concerns?

Take care

 

[karaokePete]

Hello and welcome to the forum @Cathlee7.

It is hard when you are asked who you are as my wife has done that many times with me - even shaking me awake at night to ask me. She has also asked me if I am her mummy and if I am her daddy on a few occasions. It hit me hard the first time it happened but now it's like water off a ducks back. I hope that eases for you.

You may get some value out of the AS Publications list as it is crammed with information on all aspects of dementia, including changed behaviours. Here's a link to that https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

I see Jale has mentioned Admiral Nurses and to help you with that here's a link to their help line details https://www.dementiauk.org/dementia-uk-helpline-extends-hours/

In relation to general communication matters, there is a thread with a lot of tips and you can find that with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[barryg]

Hello Cath

You cope with this by not taking it personally, just as you did not expect your husband to take it personally when you swore and screamed at him during childbirth. You cope by trying to understand him, and looking for strategies to deal with such situations. You cope by reminding yourself that this is the man you married all those years ago, who has fallen ill and needs your help and your forbearance. If that man from years ago could look into the future, what would he say about his behaviour right now? Probably, "Whatever happens, whatever I say which hurts you, remember that beneath it all I will always love you." If the tables were turned, would you tell him otherwise?

If my experience with my mother is typical (she had mixed vacular/Alzheimer's dementia), this kind of behaviour subsides. It doesn't disappear altogether, but it does get better. As you know, it fluctuates. In her lucid moments, my mother was urgent for me to know that she loved me.

The typical attitude of "It's not him it's the dementia" and "He is not the person I married" are as unhelpful and infuriating as men dismissing a woman's tetchiness with "It's that time of the month again." It fails to take seriously what are desperate attempts to communicate distress and confusion, and it destroys hope because it suggests there is nothing you can do about it. There is something you can do : you can try to understand him. Of course the dementia is the cause of the problem, but his behaviour is a rational response to his impaired perception of the world.

Books such as "Contented Dementia" by Oliver James explain this using a "photograph album" analogy. Your husband has pages missing in his album, and/or broken links between pages. He senses that he is "at home" but when he finds a page titled "Home" the furniture has been changed and you are not recognised as the wife (or mother) he expects to find. (You are probably on a different page but the link to it is broken.) He is confused, and tries to make sense of the situation as best he can. Who is this stranger in his house? Why is she acting like it is her house?

That book, and several others like it, offer refreshing insights and hope. It gives 3 Golden Rules for not only coping but stepping into your husband's world, one of which is to "Learn from the Expert" - the person with dementia. There is also a method (SPECAL) which takes a lot of effort to learn and apply. But the Golden Rules and the mere insight into how your husband thinks will help you enormously without the full SPECAL method.

Alzheimers Reading Room website by Bob DeMarco also contains inspiring reflections, insights and advice. He also learned from his mother, enabling her to live a fulfilling life and to minimise the effects of dementia.

The book “Dementia Reconsidered” by Professor Tom Kitwood explains how a person with dementia thinks and how to care for him. It advises looking behind the disease at the person beneath.


I had the same problem as you with agency carers who came in to shower my Mum. We had many young girls, a different one each time. My Mum sensed their lack of confidence and shouted for me to take over. At first the agency had sent an older matronly woman, a team leader, with whom my Mum was compliant. But probably they could not afford to send her regularly. Ask the agency if they can send such a woman, every time. If not, ask if the girls can do some housework instead - "for your husband". If they refuse, discuss the situation with your social worker, and ask about Self-Directed Support.

In the end I cancelled the care package and used attendance allowance to pay a cleaner to come in for 2 hours each week. It helped me catch up on housework while my Mum was at a Day Centre.

Another lesson I learned from my Mum was to be flexible and "don't sweat the small stuff". When her sleeping hours became erratic and she became active at night, I dozed with her in the lounge during the day. When she resisted the shower or bed at the usual time I didn't try to force her : I tried again later, when she got up onto her feet. When I didn't have time for the housework, I allowed it to pile up. Surprisingly for a woman who had been so house-proud, it didn't seem to bother her at all.

My mother died 2 and 3/4 years ago. I would give everything I have, and the rest of my own life also, to have her back with me now. I would gladly put up with the incontinence and the worst of her aggression. It took me a year or more to learn how to cope with the aggression, by which time it had subsided somewhat. I wish I had had the foresight then to appreciate and make the most of the life that we had together before it was taken away.

Regards

Barry

 

[maryjoan]

Hello Cath

You cope with this by not taking it personally, just as you did not expect your husband to take it personally when you swore and screamed at him during childbirth. You cope by trying to understand him, and looking for strategies to deal with such situations. You cope by reminding yourself that this is the man you married all those years ago, who has fallen ill and needs your help and your forbearance. If that man from years ago could look into the future, what would he say about his behaviour right now? Probably, "Whatever happens, whatever I say which hurts you, remember that beneath it all I will always love you." If the tables were turned, would you tell him otherwise?

If my experience with my mother is typical (she had mixed vacular/Alzheimer's dementia), this kind of behaviour subsides. It doesn't disappear altogether, but it does get better. As you know, it fluctuates. In her lucid moments, my mother was urgent for me to know that she loved me.

The typical attitude of "It's not him it's the dementia" and "He is not the person I married" are as unhelpful and infuriating as men dismissing a woman's tetchiness with "It's that time of the month again." It fails to take seriously what are desperate attempts to communicate distress and confusion, and it destroys hope because it suggests there is nothing you can do about it. There is something you can do : you can try to understand him. Of course the dementia is the cause of the problem, but his behaviour is a rational response to his impaired perception of the world.

Books such as "Contented Dementia" by Oliver James explain this using a "photograph album" analogy. Your husband has pages missing in his album, and/or broken links between pages. He senses that he is "at home" but when he finds a page titled "Home" the furniture has been changed and you are not recognised as the wife (or mother) he expects to find. (You are probably on a different page but the link to it is broken.) He is confused, and tries to make sense of the situation as best he can. Who is this stranger in his house? Why is she acting like it is her house?

That book, and several others like it, offer refreshing insights and hope. It gives 3 Golden Rules for not only coping but stepping into your husband's world, one of which is to "Learn from the Expert" - the person with dementia. There is also a method (SPECAL) which takes a lot of effort to learn and apply. But the Golden Rules and the mere insight into how your husband thinks will help you enormously without the full SPECAL method.

Alzheimers Reading Room website by Bob DeMarco also contains inspiring reflections, insights and advice. He also learned from his mother, enabling her to live a fulfilling life and to minimise the effects of dementia.

The book “Dementia Reconsidered” by Professor Tom Kitwood explains how a person with dementia thinks and how to care for him. It advises looking behind the disease at the person beneath.


I had the same problem as you with agency carers who came in to shower my Mum. We had many young girls, a different one each time. My Mum sensed their lack of confidence and shouted for me to take over. At first the agency had sent an older matronly woman, a team leader, with whom my Mum was compliant. But probably they could not afford to send her regularly. Ask the agency if they can send such a woman, every time. If not, ask if the girls can do some housework instead - "for your husband". If they refuse, discuss the situation with your social worker, and ask about Self-Directed Support.

In the end I cancelled the care package and used attendance allowance to pay a cleaner to come in for 2 hours each week. It helped me catch up on housework while my Mum was at a Day Centre.

Another lesson I learned from my Mum was to be flexible and "don't sweat the small stuff". When her sleeping hours became erratic and she became active at night, I dozed with her in the lounge during the day. When she resisted the shower or bed at the usual time I didn't try to force her : I tried again later, when she got up onto her feet. When I didn't have time for the housework, I allowed it to pile up. Surprisingly for a woman who had been so house-proud, it didn't seem to bother her at all.

My mother died 2 and 3/4 years ago. I would give everything I have, and the rest of my own life also, to have her back with me now. I would gladly put up with the incontinence and the worst of her aggression. It took me a year or more to learn how to cope with the aggression, by which time it had subsided somewhat. I wish I had had the foresight then to appreciate and make the most of the life that we had together before it was taken away.

Regards

Barry

With huge respect to you, Barry, but the situation is very, very different when the person you are caring for is your one time partner/lover/ father of your children. There is no such thing as Contented Dementia for the carer - mayhaps for the person with dementia, but the former spouse, lover, the love of my life ( as my partner called me) is relegated to being nothing more than a servant in their own home 24/7 and loses identity - oh boy - is it emotionally a completely different thing.

 

[canary]

Hello @katydid
I think it hits harder when you are, or have been a nurse/doctor/health professional yourself. I think it is because you feel you should know what to do and the realisation that all your training does not help is difficult. I have had to detach myself from my OH and step back emotionally because I have found his behaviour very upsetting. I put on my "professional hat" and treat him as if he were a patient, rather than my husband. It makes me sad that I have to do this, but it does help.

 

[Violetrose]

hi. I am Cath, my husband 76 now was diagnosed with vascular dementia in 2014, although nobody told me until 2017
When he had a couple of strokes was the first time I had any discussion with medics.
The vascular disease has cost him his mobility and his continence. He is losing words and understanding, plus he is unable to process thoughts, words or directions/instructions, which leads to a great need for help
Being a senior nurse myself, I was shocked that,I had not seen this coming, although he has always been a bit of a sulker, he has always been a gentleman, and a bit of a prude in fact.
The last 18months or so have brought a typical evening dementia deterioriation, during the day, quietsleepy and willing to cooperate to an extent, but get,to 3.30 4pm. Change!,!!
He b comes completely lost, and quite suddenly so I am sittting reading, and I hear, what have you done that for? Looking blank or questioning brings further abuse, “you don’t care do you?” Who are you anyway. This is sometimes after a few more gentle comments, like “are we going now? “ And will often end with “who are you?
The worst though are the sudden insults even though I know it’s not really him, it hurts, I was until recently his only carer with a little help from my son, who,is himself disabled. We now have a shambolic agency care wrong times, girls -and I use the word advisedly, no training usually- who turn up with no knowledge of him of even his problem! He is not impressed and neither am I.
So to my question how do,you cope with that sudden thump in the heart?

Dear Katy, I have the same situation with my husband. I does not happen every day, but when it does it is very distressing. Unfortunately I do not know the answer to this. Last week he had a very bad episode where he was convinced I had gone out dancing (I wish). He was getting more and more agitated, going out in the garden to look for me in the shed, phoning me and asking where I was, even though I was in the room with him. In the end I decided it would help if I went out and came back in, but when I went to get up he grabbed my arm and would not let me go. I was pleading with him to let go and eventually he did. I went in the kitchen and he followed me, I said why did you do that and he said because you were hitting me. I have never hit him in the 50 years we have been together. I was scared and upset and realised that he is far, far stronger than me. He has always been gentle and kind, so this change is very disconcerting. I am on tenterhooks now watching for anything else happening. I have started leaving my bag with car keys and phone hidden near the front door in case I have to get out quickly. This last episode has completely changed how I feel about the situation. I assumed we would bumble along with him getting more frail and confused and dependant, but now I wonder if the future will be even more challenging than I thought. I am sorry this will not be any help to you. I wish I could offer you some solutions and comfort. All I can do is to send you some love and understanding for your situation.

 

[Jayjoe8985]

Hello Cath

You cope with this by not taking it personally, just as you did not expect your husband to take it personally when you swore and screamed at him during childbirth. You cope by trying to understand him, and looking for strategies to deal with such situations. You cope by reminding yourself that this is the man you married all those years ago, who has fallen ill and needs your help and your forbearance. If that man from years ago could look into the future, what would he say about his behaviour right now? Probably, "Whatever happens, whatever I say which hurts you, remember that beneath it all I will always love you." If the tables were turned, would you tell him otherwise?

If my experience with my mother is typical (she had mixed vacular/Alzheimer's dementia), this kind of behaviour subsides. It doesn't disappear altogether, but it does get better. As you know, it fluctuates. In her lucid moments, my mother was urgent for me to know that she loved me.

The typical attitude of "It's not him it's the dementia" and "He is not the person I married" are as unhelpful and infuriating as men dismissing a woman's tetchiness with "It's that time of the month again." It fails to take seriously what are desperate attempts to communicate distress and confusion, and it destroys hope because it suggests there is nothing you can do about it. There is something you can do : you can try to understand him. Of course the dementia is the cause of the problem, but his behaviour is a rational response to his impaired perception of the world.

Books such as "Contented Dementia" by Oliver James explain this using a "photograph album" analogy. Your husband has pages missing in his album, and/or broken links between pages. He senses that he is "at home" but when he finds a page titled "Home" the furniture has been changed and you are not recognised as the wife (or mother) he expects to find. (You are probably on a different page but the link to it is broken.) He is confused, and tries to make sense of the situation as best he can. Who is this stranger in his house? Why is she acting like it is her house?

That book, and several others like it, offer refreshing insights and hope. It gives 3 Golden Rules for not only coping but stepping into your husband's world, one of which is to "Learn from the Expert" - the person with dementia. There is also a method (SPECAL) which takes a lot of effort to learn and apply. But the Golden Rules and the mere insight into how your husband thinks will help you enormously without the full SPECAL method.

Alzheimers Reading Room website by Bob DeMarco also contains inspiring reflections, insights and advice. He also learned from his mother, enabling her to live a fulfilling life and to minimise the effects of dementia.

The book “Dementia Reconsidered” by Professor Tom Kitwood explains how a person with dementia thinks and how to care for him. It advises looking behind the disease at the person beneath.


I had the same problem as you with agency carers who came in to shower my Mum. We had many young girls, a different one each time. My Mum sensed their lack of confidence and shouted for me to take over. At first the agency had sent an older matronly woman, a team leader, with whom my Mum was compliant. But probably they could not afford to send her regularly. Ask the agency if they can send such a woman, every time. If not, ask if the girls can do some housework instead - "for your husband". If they refuse, discuss the situation with your social worker, and ask about Self-Directed Support.

In the end I cancelled the care package and used attendance allowance to pay a cleaner to come in for 2 hours each week. It helped me catch up on housework while my Mum was at a Day Centre.

Another lesson I learned from my Mum was to be flexible and "don't sweat the small stuff". When her sleeping hours became erratic and she became active at night, I dozed with her in the lounge during the day. When she resisted the shower or bed at the usual time I didn't try to force her : I tried again later, when she got up onto her feet. When I didn't have time for the housework, I allowed it to pile up. Surprisingly for a woman who had been so house-proud, it didn't seem to bother her at all.

My mother died 2 and 3/4 years ago. I would give everything I have, and the rest of my own life also, to have her back with me now. I would gladly put up with the incontinence and the worst of her aggression. It took me a year or more to learn how to cope with the aggression, by which time it had subsided somewhat. I wish I had had the foresight then to appreciate and make the most of the life that we had together before it was taken away.

Regards

Barry

Barryg this message really give me a lump in my throat. My mum lives with myself and my husband and we are really struggling at the minute. She's aggressive at times,. Incontinent, can't speak anything that makes sense and worst of all hasbus up alot of the night then 5am rise. But I I've her dearly. I'm exhausted and trying to take it easy and not sweat your post made give me a bit of hope and appreciate that at least I can hug and kiss my mum. How did your mum pass? Did you care for her till the end?

 

[Guzelle]

I never know what to expect from my OH these days with his mood swings. I get accused of all sorts like taking all his clothes and replacing them with mine, when his are there all along! He then gets very angry and opens the door hard so the handle bangs my arm really hard. I have a massive bruise it is very frightening and upsetting!

 

[katydid]

Hello and welcome to the forum @Cathlee7.

It is hard when you are asked who you are as my wife has done that many times with me - even shaking me awake at night to ask me. She has also asked me if I am her mummy and if I am her daddy on a few occasions. It hit me hard the first time it happened but now it's like water off a ducks back. I hope that eases for you.

You may get some value out of the AS Publications list as it is crammed with information on all aspects of dementia, including changed behaviours. Here's a link to that https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

I see Jale has mentioned Admiral Nurses and to help you with that here's a link to their help line details https://www.dementiauk.org/dementia-uk-helpline-extends-hours/

In relation to general communication matters, there is a thread with a lot of tips and you can find that with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

Thanks for the links. I am grat fun for the details.