End of my tether.

[bakinghappy]

I know I'm probably posting in the wrong thread but I'm simply at the end of my tether. My husband is getting really hard to live with. He hides things, turns things off when they should be on. Leaves taps on and moves stuff like the shower head that is now only working one side. Who do I call for that? He lies and lies and lies. I look after him I really do but when I point something out I hear him cursing me and calling me names. I want to explain to the children and they are lovely children but it's obvious that they feel their own lives are busy and complicated. I hate it and I'm full of anxiety. I don't like the expressions he makes. Sometimes flashing eyes and sometimes play acting and not really feeling any empathy at all.
Myself I've started to suffer from health anxiety. Everything a doctor says or a test a bit iffy I'm so frightened with nobody to turn to.
I know it can't get better but I see an article about dementia and I think if he did something like reading or puzzles things could get better. It's just hope over a really awful time in my life. I think some of my anxiety about health is because I'm afraid worse things are going to come crashing down on me and I wont be able to cope anymore. I'm so sorry to keep going on and I do read some of your posts and sense your bravery.

 

[Grannie G]

Are you getting any help @bakinghappy ? If not, now is the time to contact social services and ask for an assessment.

Social care and support guide

If you or someone you know needs help with day-to-day living because of illness or disability, this website explains your options and where you can get support.

www.nhs.uk

 

[bakinghappy]

Are you getting any help @bakinghappy ? If not, now is the time to contact social services and ask for an assessment.

Social care and support guide

If you or someone you know needs help with day-to-day living because of illness or disability, this website explains your options and where you can get support.

www.nhs.uk

I think it would this moment in time make it worse. He wont accept it. In fact it makes him angry just to talk about it. In time I'm sure it will change but at the moment it's impossible. Thank you though x

 

[canary]

Hello @bakinghappy

Im sorry to say that reading articles on dementia gives a very false view of what dementia is like. They are full of photos of sweet little elderly people smiling at their carer, there is talk of "living well with dementia" and the impression is that dementia is benign and the people with it just get forgetful.

Well it isnt. The reality is what you have described. The memory loss is just the tip of the iceberg and its everything else that is hard to deal with.

People with dementia do indeed lose empathy and this means that everything becomes about them - they are unable to understand that you have needs too. They also lose insight so they are totally unaware of their dementia symptoms and do not believe that they have anything wrong with themself. They move things around and do not realise that they are doing it. They worry that people are stealing from them, so they hide things so that the thief wont find it, but then forget what they have done so think they have been stolen! They cant work out how things work any more and think they are broken. Often they will try and "fix" things, but they get muddled. Because they dont realise that they are the one doing things, they blame other people - usually their main carer. The lies are actually what is called confabulations - false memories - that they are totally convinced are true. If you tell them they arnt true they dont believe you, because, you see, they remember them....

Put all of this lot together and they are frustrated and bewildered. They realise that things dont happen as they expect and things seem to be going wrong. Their spouse is telling them things that dont fit with their memory, and everything is confusing. They are unable to understand what is happening, dont realise that the problem is them so they think you are gaslighting them and you have become this horrible person who is doing things and is pretending that it is them when they know that it isnt.

Knowing that these things are normal for dementia, doesnt make it any easier to handle, though. The best way to deal with it is not to contradict him. You have to eanter his world and try and change the narrative. If he complains that you have broken something, dont tell him that he did, say - "oh dear, Ill have to get a new one" and then fix it later when hes forgotten. Agree with him that modern day appliances are confusing. And walk away when he becomes accusatory.
xx

 

[bakinghappy]

Hello @bakinghappy

Im sorry to say that reading articles on dementia gives a very false view of what dementia is like. They are full of photos of sweet little elderly people smiling at their carer, there is talk of "living well with dementia" and the impression is that dementia is benign and the people with it just get forgetful.

Well it isnt. The reality is what you have described. The memory loss is just the tip of the iceberg and its everything else that is hard to deal with.

People with dementia do indeed lose empathy and this means that everything becomes about them - they are unable to understand that you have needs too. They also lose insight so they are totally unaware of their dementia symptoms and do not believe that they have anything wrong with themself. They move things around and do not realise that they are doing it. They worry that people are stealing from them, so they hide things so that the thief wont find it, but then forget what they have done so think they have been stolen! They cant work out how things work any more and think they are broken. Often they will try and "fix" things, but they get muddled. Because they dont realise that they are the one doing things, they blame other people - usually their main carer. The lies are actually what is called confabulations - false memories - that they are totally convinced are true. If you tell them they arnt true they dont believe you, because, you see, they remember them....

Put all of this lot together and they are frustrated and bewildered. They realise that things dont happen as they expect and things seem to be going wrong. Their spouse is telling them things that dont fit with their memory, and everything is confusing. They are unable to understand what is happening, dont realise that the problem is them so they think you are gaslighting them and you have become this horrible person who is doing things and is pretending that it is them when they know that it isnt.

Knowing that these things are normal for dementia, doesnt make it any easier to handle, though. The best way to deal with it is not to contradict him. You have to eanter his world and try and change the narrative. If he complains that you have broken something, dont tell him that he did, say - "oh dear, Ill have to get a new one" and then fix it later when hes forgotten. Agree with him that modern day appliances are confusing. And walk away when he becomes accusatory.
xx

 

[bakinghappy]

Thank you. I do try and I often just say things aren't how they were in the past etc. But sometimes It's very difficult for carers. When things go wrong and you spend some of the day following your husband around so there's less damage it's exhausting. Entirely agree that to really understand dementia you have to live with the person. The sad thing is he did have a tendency to aggression and unkindness. I'm sure you'll understand that personality can make things worse and I've been terribly hurt in the past. Nevertheless I always try my best and try and smooth things over with helpful solutions. I must say though in general people looking after others with dementia must hit rock bottom sometimes. It's only human.

 

[Anthoula]

Thank you. I do try and I often just say things aren't how they were in the past etc. But sometimes It's very difficult for carers. When things go wrong and you spend some of the day following your husband around so there's less damage it's exhausting. Entirely agree that to really understand dementia you have to live with the person. The sad thing is he did have a tendency to aggression and unkindness. I'm sure you'll understand that personality can make things worse and I've been terribly hurt in the past. Nevertheless I always try my best and try and smooth things over with helpful solutions. I must say though in general people looking after others with dementia must hit rock bottom sometimes. It's only human.

You are so right. Carers are only human and the path of caring is a rocky one that`s for sure. We, carers and those with dementia, all have different personalities, abilities and tolerance levels. There are no guaranteed methods of handling situations. What works for one may not work for another. All carers can do is their best and acknowledge that sometimes they don`t get it right.

 

[Grannie G]

I think it would this moment in time make it worse. He wont accept it. In fact it makes him angry just to talk about it. In time I'm sure it will change but at the moment it's impossible. Thank you though x

My husband was the same.

I got round this by telling him I needed help in the house. I was getting older, had arthritis and back ache etc. and help would make life easier for me.

He accepted this and the care agency did everything to support me.

 

[bakinghappy]

My husband was the same.

I got round this by telling him I needed help in the house. I was getting older, had arthritis and back ache etc. and help would make life easier for me.

He accepted this and the care agency did everything to support me.

Thank you for your reply. I know I will eventually ask for help. People on here are so kind.

 

[NickieG]

I think it would this moment in time make it worse. He wont accept it. In fact it makes him angry just to talk about it. In time I'm sure it will change but at the moment it's impossible. Thank you though x

We’ve got the same with dad really agrees I’ve, mum is nearly ninety and struggling with him. Xx

 

[canary]

I must say though in general people looking after others with dementia must hit rock bottom sometimes. It's only human.

Indeed, and I have.
I was trying to do everything and overextending myself.
Eventually, yes, I hit rock bottom and became suicidal. OH had to go into emergency respite for a few weeks until I felt a bit better (having been started on antidepressants). It was a condition of him coming home that I had carers in to help him wash dress etc in the morning. He didnt have any choice. I have found them an absolute godsend - they are cheerful and get him sorted out while I can do something else (sometimes just sitting quietly by myself with a cup of coffee). I have also got a Home Help from Age UK who comes in once a week and helps me with housework and laundry and I have a husband and wife gardeners who keep my garden looking nice (OH used to be the gardener) and we can enjoy sitting out in it.

Please dont allow yourself to hit rock bottom
xx

 

[57mj]

I doesn't make any difference what people say to you because you are the one living with the condition everyday and every night . The sadness thing is that the condition will become un manageable for you and your family. Call the GP and get a referral to the adult crisis team. I have being living it for years with my husband and now he is in hospital. The only thing is that you continue living it with them. Please keep shouting as life will become so so hard through no fault of anyone. Take care.

 

[Somerset girl]

Just wanted to say that there’s help ‘out there’, but…… you have to find it yourself. Once you e found it it’s so good. Our GP surgery has a dementia carer person, there’s the Alzheimer’s society person within our area, there’s a group that meets monthly and I’m in touch with the Admiral nurses (for ex forces personnel, but sometimes not I understand).

I can’t stress enough how helpful these people are, once you contact one it snowballs. You need help tomorrow. Sending hugs.

 

[Somerset girl]

Hi, can anyone tell me what’s happening? I’ve posted on here telling you how I’m struggling etc. However, since New Year my husband appears to have changed and gone back to himself. Don’t get me wrong he’s still selfish (making himself a drink and not even asking me, even when I’ve just got hone from the supermarket, he wouldn’t do this really), still repeating stories and jokes to people, but not me.

However, the anger and aggression seems to have gone and he’s chatting, telling me about his day. I honestly can’t believe this, although it’s great to have my man back. Is this normal and how long will it last, Is the Alzheimer’s progressing, I know it can’t be reversed. I’m confused.

 

[canary]

However, the anger and aggression seems to have gone and he’s chatting, telling me about his day. I honestly can’t believe this, although it’s great to have my man back. Is this normal and how long will it last, Is the Alzheimer’s progressing,

It could be. OHs anger has burnt out as he no longer tries to do things and then gets frustrated
I hope it lasts
xx

 

[Somerset girl]

It could be. OHs anger has burnt out as he no longer tries to do things and then gets frustrated
I hope it lasts
xx

Thank you, so do I……. I don’t ask him to do anything (get my son in law in secret to help me), maybe he’s happy that I don’t ask.

 

[Rayreadynow]

Thank you, so do I……. I don’t ask him to do anything (get my son in law in secret to help me), maybe he’s happy that I don’t ask.

you sound very unhappy but if you write things down on here then come back the next day a read it again it may not seem so bad.

 

[ian.gregson38]

Hi
My Mum has Lewy Body, and I have just started to agree with things she is saying, just to make it a little easier for all involved, this is extremely difficult at times.
it is absolutely heart breaking, watching my mum going through the different stages of Lewy Body takes a piece of me every time i visit her at the home.

People say that it is not my mum saying these nasty things that she comes out with, however it is my mum saying it, and being an only child i struggle.

 

[Somerset girl]

I appreciate all the support on here, thank you.

 

[Gosling]

Hello @ian.gregson38 and welcome to this friendly and supportive forum. There is a lot of shared experience of dementia here and members really do want to help... and understand.

I am sorry to read of your Mum's diagnosis. It's hard on you for sure, I am attaching a link which you may find useful:

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

It is the disease that is making your Mum say nasty things.. not her, but I absolutely know that is no help as it is all going on. You have to develop such a thick skin - it's plain horrible.
I hope you will find this forum useful for good suggestions and advice.