No cognition

[Chocolateear]

In the early days I 'taught' my husband to use the iPad. It took 2 months for him to learn how to turn it on, a further 6 weeks to learn how to log on. Now all he does is check his emails and his Experian report, every day. Sometimes, he accidentally types his email address incorrectly and gets really angry and he changes his password every day. Even though we wrote it down he doesn't recognise it.
Every day I have to find him something to do otherwise he has no idea. He's lost his sense of humour and I even had to draw a diagram on how to catch the bus!
Fortunately I used to teach SEN children so am used to breaking things down into step by step parts but even then he doesn't always understand.
He has Tinnitus and his autonomic neuropathy makes it worse so I can fully appreciate how being hard of hearing can impact on cognition. We are in a calm phase at the moment so conversation isn't too bad but I have no idea how long this will last. It's frustrating for both parties.

 

[Chuggalug]

In the early days I 'taught' my husband to use the iPad. It took 2 months for him to learn how to turn it on, a further 6 weeks to learn how to log on. Now all he does is check his emails and his Experian report, every day. Sometimes, he accidentally types his email address incorrectly and gets really angry and he changes his password every day. Even though we wrote it down he doesn't recognise it.
Every day I have to find him something to do otherwise he has no idea. He's lost his sense of humour and I even had to draw a diagram on how to catch the bus!
Fortunately I used to teach SEN children so am used to breaking things down into step by step parts but even then he doesn't always understand.
He has Tinnitus and his autonomic neuropathy makes it worse so I can fully appreciate how being hard of hearing can impact on cognition. We are in a calm phase at the moment so conversation isn't too bad but I have no idea how long this will last. It's frustrating for both parties.

I completely agree, Chocolateear about the frustration. Trouble is, even before this all began with the dementia, my husband was just about unteachable using the computer as he's always been the type of person who's always right and everyone else is wrong, so even though I used to tell him things like his email address and how to open and close a software window or application, he just couldn't get it. That was an awful time and makes me wonder if his reasoning skills actually stopped for far longer than I've realised. Once you can't reason and work things out, you're pretty much stuck with frustration.

I used to get accused of being impatient! Can't win, can we.

These days, it's lost keys and last night, his fist in my face. Yesterday morning, the postman was supposed to have been outside waiting to deliver something and I was to unlock the doors. Ain't no Postie around at 6:20 in the morning around here. Made for anything but a jolly day, that did.

 

[Grannie G]

These days, it's lost keys and last night, his fist in my face..

Please don’t think you have to accept any form of abuse just because your husband is ill. Help is available but you need to ask for it.

 

[LadyA]

Please don’t think you have to accept any form of abuse just because your husband is ill. Help is available but you need to ask for it.

Sadly, not always Grannie G. When my husband at one stage landed me across the room and was trying to get his hands around my throat because I was trying to change him, he calmed down because I just left him unchanged. But when I contacted the "proper channels" the following day, I was told "It's awful. You just have to persevere the best you can."

 

[Chuggalug]

Please don’t think you have to accept any form of abuse just because your husband is ill. Help is available but you need to ask for it.

I do have to accept it, Grannie G. You wouldn't believe what it would be like if I went through the harassment of trying to get help again. Already been through too much of a nightmare in the past. One of the things where a pal said I should get some advice from the police when this all began. I took his advice. Back in those days, hubby was still driving. All I got from the police was my details taken and a threat of prosecution if my husband hurt anyone whilst driving. I gave up asking for help after that.

 

[Chocolateear]

Please don’t think you have to accept any form of abuse just because your husband is ill. Help is available but you need to ask for it.

I went to my GP because my husband was being spiteful, having violent outbursts and generally wearing me down. What did I get? Shrugged shoulders and told there was nothing he could do. Got in touch with the Neurologists PA only to be told we have to have a referral from the GP.

 

[Chocolateear]

I completely agree, Chocolateear about the frustration. Trouble is, even before this all began with the dementia, my husband was just about unteachable using the computer as he's always been the type of person who's always right and everyone else is wrong, so even though I used to tell him things like his email address and how to open and close a software window or application, he just couldn't get it. That was an awful time and makes me wonder if his reasoning skills actually stopped for far longer than I've realised. Once you can't reason and work things out, you're pretty much stuck with frustration.

I used to get accused of being impatient! Can't win, can we.

These days, it's lost keys and last night, his fist in my face. Yesterday morning, the postman was supposed to have been outside waiting to deliver something and I was to unlock the doors. Ain't no Postie around at 6:20 in the morning around here. Made for anything but a jolly day, that did.

It's interesting what you say about your hubby being unteachable before the Dementia thing began. We've only been officially diagnosed for a couple of years and yet my hubby was having violent outbursts long before his NPH was even diagnosed and the shunt fitted. He never remembered them and my Dad used to ask if hubby had Alzheimer's then and that was at least eight years ago.
Everyday is Groundhog Day here too. At the moment it's his license and his Motability car. His license was revoked a few weeks ago when he reapplied for it as a Diabetic. He mentioned the drain of excess fluid from his shunt and they told him to reapply in six weeks. He reapplied straightaway and in the meantime has had his shunt readjusted to try and alleviate the build up of CSF. When he rang the DVLA they told him they were looking into it but every day, even today, he will be looking out for the postman bringing his license back.
You're right we can't win. To be able to reason you have to have a reasonable frame of mind and hubby's went years ago so yes, we are stuck with frustration. Last time I spoke to the consultant and the GP I told them both that if hubby's license was taken away permanently I wanted one of them to have the responsibility because I am responsible for everything else and couldn't face taking the brunt of making that decision for him.

 

[stanleypj]

It's truly awful to hear these accounts Chuggalug and Lady A.

But the fact is that no-one has to accept abuse from anyone.

Just as no-one has to care for anyone.

I understand that, in both cases, those authorities you approached were criminally negligent and that's unacceptable. But there are ways of dealing with that. Difficult though they may be, they are surely less difficult and corrosive than living with abuse.

You could, for a start, contact the National Dementia Helpline:

http://www.alzheimers.org.uk/helpline

 

[Chuggalug]

It's truly awful to hear these accounts Chuggalug and Lady A.

But the fact is that no-one has to accept abuse from anyone.

Just as no-one has to care for anyone.

I understand that, in both cases, those authorities you approached were criminally negligent and that's unacceptable. But there are ways of dealing with that. Difficult though they may be, they are surely less difficult and corrosive than living with abuse.

You could, for a start, contact the National Dementia Helpline:

http://www.alzheimers.org.uk/helpline

Stanley, I see from the link that the helpline is run by the same folk who run this website. Back a few months ago when hubby went to hospital for a supposed stroke, everyone was all over us. Couldn't do enough to help. His care was awesome. No other way to describe it. It was awesome. But it was for a stroke. Not dementia.

Even in the hospital, it was me who talked about the dementia and had a conversation there with one of the healthcare team about it. Nothing was done about it except for a bit of sympathy. One guy there, if he COULD have helped, I'm sure he WOULD have. But as with everything, his hands were tied.

Stanley, even with my own condition, I was fobbed off by being told it was all in my head. Actually, it's all in my bones and it's quite serious. But it took a year to get full X-rays done and a fantastic explanation from a senior doctor at the hospital who waited for my return from the X-ray unit so that he could go through it all with me. He had a meeting in London to attend after seeing me, plus some other engagement the same night. But he waited.

Nobody believes it when I tell them the first time I asked for pictures to be taken of my upper spine only to be told: "Oh, we can't do that. It's against the Law."

Who's law was that, then? There are so many stories I could tell on here, but I don't want to put anyone else off asking for help. Where I come from, I've seen the difference between three things, care at my surgery, care for a stroke (remember awesome), and dementia care. Even the police are terrified if that gets mentioned. They are terrified, as one incident I came across told me, and that's another story for another time. What this all says to me is that NOBODY here is trained to handle it. So I have to live alone with it. Out of sight, out of mind.

 

[Teanosugar]

Maybe try logging in for him?

Hi everyone.

This is really hard to describe. My hubby can still talk, but he cannot seem to understand anything I say when I answer. If I could give a one word answer, it might work. But the responses to things like: "I can't get my computer to work (he still uses XP) are hard to reply to.

He doesn't actually USE the PC. It became habit just to power it up, as that's what he's done for many years! I still find him sitting in front of the screen, occasionally, but he doesn't have enough cognition to know what to do with it, now.

He is very deaf, but does dementia affect how a person hears as well? Has anyone else come up with the difficulty of not being able to reply to their OH?

Man, but it's difficult, this disease

Can I suggest if you have photographs on the computer, it might work to play them for him, perhaps talk through the photographs thus he will see his computer still works? This might help calm him down and be a stroll down memory lane for you both?

 

[Chuggalug]

I'll stick that other story in here. Hubby was going on and on for days about our gates having been stolen, and called the police about it.

We've never had gates.

Ever!

Anyway, a Community Support Officer, (very young girl) turned up to take up the incident. She came in and listened to what hubby had to say, and was very polite and patient. But even she could see something was amiss as he couldn't remember things as she posed her own questions.

When the meeting was over, I went out the front door with her and told her straight about his dementia and the fact that I was in a mess over it. This must be at least a couple of years ago. I mentioned him getting angry and there possibly being an upset because of it.

"Oh, please don't have an upset until I get off shift," she said.

I tell you. Even the police are terrified around here. How the heck do they think I feel?

 

[Chuggalug]

hi
have you tried writing your responses to him? I know it may sound simple but some people with demntia (especially if they have hearing problems) can read fine, try making you response bold and clear. Hope this helps.

Phoebe
Dementia support worker

I have thought about this. It's actually a very good idea. Thank you Phoebe. What a fantastic site this is! I learn so much from it.

 

[Sue J]

Can I suggest if you have photographs on the computer, it might work to play them for him, perhaps talk through the photographs thus he will see his computer still works? This might help calm him down and be a stroll down memory lane for you both?

I try and take my camera whenever I am able to go out and especially when I enjoy time with friends. It helps me a lot to stay connected as when I am then 'confined' I view the photos and theynot only help my memory but cheer me up too Memories are always linked and it really does help to put things in a better 'time perspective' when it seems that disappears. I, personally, find itharder to look at more distant photographs because they remind me of my losses and I don't want to dwell on them.

Being out, using the camera can also be a help in itself as it forces me to focus on something of interest and not some of the other horrible things that invade my head at times.

 

[Sue J]

I'll stick that other story in here. Hubby was going on and on for days about our gates having been stolen, and called the police about it.

We've never had gates.

Ever!

Anyway, a Community Support Officer, (very young girl) turned up to take up the incident. She came in and listened to what hubby had to say, and was very polite and patient. But even she could see something was amiss as he couldn't remember things as she posed her own questions.

When the meeting was over, I went out the front door with her and told her straight about his dementia and the fact that I was in a mess over it. This must be at least a couple of years ago. I mentioned him getting angry and there possibly being an upset because of it.

"Oh, please don't have an upset until I get off shift," she said.

I tell you. Even the police are terrified around here. How the heck do they think I feel?

Hi Chuggalug

I can sympathise and empathise with all that you write and am at what you have to continually live with.

Hoping today is a calmer one for you and your husband.
Love
Suexx

 

[Chuggalug]

Hi Chuggalug

I can sympathise and empathise with all that you write and am at what you have to continually live with.

Hoping today is a calmer one for you and your husband.
Love
Suexx

Thanks for that, Sue.

I'm tucking my head back in my shell as he's on another ranting day so far.