Unable to relate to everyday objects.

[Red Riding Hood]

To all those who are coping with this, I feel your frustration. You are not alone, although having said that - caring for a PWD can be very isolating and it's good to have this forum where we can pour it all out, not be judged, take a breath, and start again.

My husband has a rare form of FTD with Primary Progressive Aphasia. So not only does he have trouble understanding instructions or even simple sentences - he is also unable to relate to objects around (or on) him. He'll pick up a bag of groceries from the bottom, emptying it out in the process. Press the door knob to turn on a light, and the newest one - try to clean the toilet with the toilet brush, then put the toilet brush in it's holder upside down - brush sticking up. Not in any way hygienic. I now need to hide the toilet brush! And am therefore constantly following him around disinfecting and cleaning up, biting my tongue trying not to "correct" him, as he really doesn't realise he's done anything differently. The other day he used the toilet, and instead of flushing all the used toilet paper, he piled it into a heap on top of the toilet tank. And thrown some of it on the floor. Today he opened a drawer, thinking it would turn on a light! I'm exhausted, this is just an extra thing to deal with, on top of doing everything else. Educating myself about his disease does help me to understand why he does these things, and what is happening to him. But it doesn't make it any easier for me to deal with when he blames me for why things are "the wrong way round" or "not working properly". It's clear to me that the way PWD see the word around them is very confusing and frustrating. It's just so sad that there's nothing we can do to fix what's going on in their brains.

Does anyone else's loved one has similar issues with everyday objects? Are there any suggestions for how to make things less confusing for them? I know it's not going to get any better, unfortunately

 

[canary]

Hello @Red Riding Hood and welcome to the forum

I think a lot of us will have had similar confusions as dementia eventually affects every part of the brain, although I realise that language problems develop earlier in FTD and is particularly affected in PPA. It is also usual that they do not think that they have anything wrong with them, because they have lost insight to their own dementia symptoms and think that they have not changed at all.

My OH has FTD symptoms, but no diagnosis (long story) and I remember an occasion where some drink got spilled and I asked OH to fetch me a floor cloth. He went and got me, in order - the dish cloth, a tea towel, a duster, a flannel and a handkerchief. At this point I realised that to him they were all "cloths" and he couldnt differentiate further.

Im afraid I cant help further on how to help them. My OH is now almost mute and cannot perform even the simplest task, so I have to do everything, but at least I am not constantly clearing up after him. I wonder whether contacting a speech and language therapist would help?

 

[northumbrian_k]

Hi @Red Riding Hood and welcome to Dementia Support Forum. I am sorry to hear about your husband. I know nothing about FTD so can't contribute anything useful in respect of the issues you outline. As @canary has shown, there are others here who have experience of these kinds of things and can offer you the benefit of that experience.

 

[Harky]

Hi @Red Riding Hood and welcome to Dementia Support Forum. I am sorry to hear about your husband. I know nothing about FTD so can't contribute anything useful in respect of the issues you outline. As @canary has shown, there are others here who have experience of these kinds of things and can offer you the benefit of that experience.

Hi @Red Riding Hood , I've had similar problems with my wife. The way I found round it was to alarm the toilet door to alert me and also put anything in the kitchen of importance that he can make a mess with into cupboards and fit childproof locks. It at least gives a bit of time to yourself to relax knowing he's not creating chaos.

 

[maggie6445]

To all those who are coping with this, I feel your frustration. You are not alone, although having said that - caring for a PWD can be very isolating and it's good to have this forum where we can pour it all out, not be judged, take a breath, and start again.

My husband has a rare form of FTD with Primary Progressive Aphasia. So not only does he have trouble understanding instructions or even simple sentences - he is also unable to relate to objects around (or on) him. He'll pick up a bag of groceries from the bottom, emptying it out in the process. Press the door knob to turn on a light, and the newest one - try to clean the toilet with the toilet brush, then put the toilet brush in it's holder upside down - brush sticking up. Not in any way hygienic. I now need to hide the toilet brush! And am therefore constantly following him around disinfecting and cleaning up, biting my tongue trying not to "correct" him, as he really doesn't realise he's done anything differently. The other day he used the toilet, and instead of flushing all the used toilet paper, he piled it into a heap on top of the toilet tank. And thrown some of it on the floor. Today he opened a drawer, thinking it would turn on a light! I'm exhausted, this is just an extra thing to deal with, on top of doing everything else. Educating myself about his disease does help me to understand why he does these things, and what is happening to him. But it doesn't make it any easier for me to deal with when he blames me for why things are "the wrong way round" or "not working properly". It's clear to me that the way PWD see the word around them is very confusing and frustrating. It's just so sad that there's nothing we can do to fix what's going on in their brains.

Does anyone else's loved one has similar issues with everyday objects? Are there any suggestions for how to make things less confusing for them? I know it's not going to get any better, unfortunately

 

[maggie6445]

To all those who are coping with this, I feel your frustration. You are not alone, although having said that - caring for a PWD can be very isolating and it's good to have this forum where we can pour it all out, not be judged, take a breath, and start again.

My husband has a rare form of FTD with Primary Progressive Aphasia. So not only does he have trouble understanding instructions or even simple sentences - he is also unable to relate to objects around (or on) him. He'll pick up a bag of groceries from the bottom, emptying it out in the process. Press the door knob to turn on a light, and the newest one - try to clean the toilet with the toilet brush, then put the toilet brush in it's holder upside down - brush sticking up. Not in any way hygienic. I now need to hide the toilet brush! And am therefore constantly following him around disinfecting and cleaning up, biting my tongue trying not to "correct" him, as he really doesn't realise he's done anything differently. The other day he used the toilet, and instead of flushing all the used toilet paper, he piled it into a heap on top of the toilet tank. And thrown some of it on the floor. Today he opened a drawer, thinking it would turn on a light! I'm exhausted, this is just an extra thing to deal with, on top of doing everything else. Educating myself about his disease does help me to understand why he does these things, and what is happening to him. But it doesn't make it any easier for me to deal with when he blames me for why things are "the wrong way round" or "not working properly". It's clear to me that the way PWD see the word around them is very confusing and frustrating. It's just so sad that there's nothing we can do to fix what's going on in their brains.

Does anyone else's loved one has similar issues with everyday objects? Are there any suggestions for how to make things less confusing for them? I know it's not going to get any better, unfortunately

Hello, I'm sorry you are having such a frustrating time with your husband. I can't offer any solution . I'm having a similar time with my partner. He no longer recognises familiar objects. He offers any object on the coffee table apart from the cup I ask for. He doesn't understand off/ on, up/down,front/back. However I left clothes they were always the wrong way round. Shoes always on the the wrong feet etc. I do everything now to save my time and energy correcting his mistakes.
Even when I tap his left foot and say " shoe on" or " foot up" he'll either,on bad day, look blank or,on good day, lift the opposite foot.
I try to keep instructions to two or three words which on a good day works.
It's tiring and frustrating . I suppose I'm 'lucky' in that he sleeps or rests his eyes most of the day unless we go out . It means I'm not sorting his errors.
I do have the occasional smile. The other evening he was rubbing his hands, he offered a hand to me and said" my feet are cold". Whilst it amused me, it is so sad that this once highly intelligent man no longer knows the difference between his hands and his feet.

I think the problem is visual perception and if it is,I'm not sure there is a solution. Unless anyone knows different? Any advice about how I can help him,and me?

 

[SeaSwallow]

Hello @Red Riding Hood and welcome to the Dementia Support Forum. I do not know anything about FTD but have attached a link to the Rare Dementia Support website which you might find useful.

Rare Dementia Support

www.raredementiasupport.org

 

[Red Riding Hood]

Thank you all for your kindness, insight, and helpful suggestions. The thing that helps me most is hearing the similarities in the issues some of you are also facing. It does help me see that it is obviously related to more general confusion, rather than just the objects themselves, and also that understanding and processing language is a big part of it.

@canary your example of the "cloths" episode is exactly the kind of scenario we're experiencing here, also as @maggie6445 mentions, SO many problems with dressing. Tried to put his socks on his hands instead of his feet yesterday. We've actually been to Speech and Language Therapy. We did a whole course of sessions, plus homework etc. It was helpful in that it highlighted how basic his language skills have become, but was not, unfortunately, helpful in any other aspect. My OH can't learn new skills, devices, or remember any of the coping skills and tips they present. I did all the daily sessions at home with him, but he's completely unmotivated, disinterested, and it ended up just being just another thing for me to do, with no gratifying end result. So I concentrate on helping him by showing instead of saying, keeping sentences short and simple, and trying to avoid him becoming overwhelmed.

Thank you @Harky - you made me chuckle about "hiding things". I entirely agree with you - damage control, and avoiding an episode rather than dealing with it - is what it's all about these days! I hide the toothpaste, as it turns out to have so much potential for mess and angry outbursts! And that's just one example. The list goes on, but reading everyone's comments here, I feel encouraged at least in the support and understanding you've all shown. I think it's true, that unless you're actually going through the same thing, it's hard for others to properly understand the endless daily frustrations and problems experienced with the PWD and their partner/carer. Life is just not normal any more, and we know it's only going to get worse from this point on.
I'm thinking about a lock for the pantry .......

 

[canary]

We've actually been to Speech and Language Therapy. We did a whole course of sessions, plus homework etc. It was helpful in that it highlighted how basic his language skills have become, but was not, unfortunately, helpful in any other aspect. My OH can't learn new skills, devices, or remember any of the coping skills and tips they present. I did all the daily sessions at home with him, but he's completely unmotivated, disinterested, and it ended up just being just another thing for me to do, with no gratifying end result.

Oh dear, no that wouldnt work, would it?
When I suggested a Speech Therapist, I had hoped they might have had some tips for you 🙁🥺

 

[Red Riding Hood]

Oh dear, no that wouldnt work, would it?
When I suggested a Speech Therapist, I had hoped they might have had some tips for you 🙁🥺

Oh dear, no that wouldnt work, would it?
When I suggested a Speech Therapist, I had hoped they might have had some tips for you 🙁🥺

It was a helpful suggestion. They did have some tips, but only, sadly, for me. My husband can't really "help" himself any more, so it's all very carer based. I feel very sorry that you have no diagnosis for your OH. You know he has the symptoms, but no official reason for "why". It took us a long, long time to get a diagnosis for my husband. We are Brits living in the US. I'm also very sorry your OH is almost mute now. I see mine heading that way, and it's heartbreaking. I know exactly what you mean about just doing everything now, rather than let a hoped for moment of independence become a demonstration of just the opposite. And it sounds like your OH is not able to do things at all any more - again, so sorry. It's sad how they become so helpless and childlike. The burden of responsibility is huge. I keep thinking I might find solutions to help him retain some abilities and independence for a while longer - but deep inside, I know I'm just clutching at straws. But it does help to know I'm not the only person dealing with this, and already this forum and your kindness has made a difference for me - it's encouraging in it's solidarity. Thank you!

 

[maggie6445]

Hello Red Riding Hood, my professional life was working with special needs,so weak skills and slow learning are something I'm used to. Like you, I have tried hard to find solutions to help my partner retain his skills but sadly dementia robs our PWD of their skills and renders them incapable of learning new ones. I'm pleased you have found solace in knowing you are not alone and have found this forum helpful. I send you my best wishes.

 

[Red Riding Hood]

Hello Red Riding Hood, my professional life was working with special needs,so weak skills and slow learning are something I'm used to. Like you, I have tried hard to find solutions to help my partner retain his skills but sadly dementia robs our PWD of their skills and renders them incapable of learning new ones. I'm pleased you have found solace in knowing you are not alone and have found this forum helpful. I send you my best wishes.

Thank you! My sympathies are with you, too. It's certainly a sad thing to be witness to, but I hope we can take reassurance in the fact that we all do our best each day. Even when we don't think we are!

 

[Cardinal]

I listened to a talk about Alzheimer’s given by a geriatric psychologist. He had multiple doctorates in dementia. He showed a normal brain and then one with advanced Alzheimer’s. He pointed out the area of the brain where new memories are formed. On the advanced Alzheimer’s brain that area no longer existed. He explained that for some people that’s the first area of the brain to shrink and die off. He said for some others it’s the area that controls language. He then explained that once that area of the brain is no longer there it’s extremely difficult if not impossible for the person to learn new things. I try to remember that when I’m trying to teach my husband something new, like how to use the new remote for the TV.

 

[Cardinal]

Thank you! My sympathies are with you, too. It's certainly a sad thing to be witness to, but I hope we can take reassurance in the fact that we all do our best each day. Even when we don't think we are!

I think anyone who searches and seeks out a forum like this is trying to do everything possible for their loved one.

 

[Harky]

@Red Riding Hood , yes I also put childproof locks on fridge and freezer. The thing about dementia, people only see the TIP OF THE ICEBERG. When you mention the word people think it's just a bit of forgetfulness, as we know, it's SSSSooo much more! I've got a friend who's got Parcinsons and all you see/think is tremors but like dementia it's just the tip of it all.

 

[Red Riding Hood]

@Red Riding Hood , yes I also put childproof locks on fridge and freezer. The thing about dementia, people only see the TIP OF THE ICEBERG. When you mention the word people think it's just a bit of forgetfulness, as we know, it's SSSSooo much more! I've got a friend who's got Parcinsons and all you see/think is tremors but like dementia it's just the tip of it all.

You are so right, @Harky! Most people have no idea of what goes on behind the scenes. The most simple of everyday tasks become a huge challenge. My OH misplaced his glasses so many times in one day I lost count. So half the day is spent helping him look for his glasses, and other things don't get done. I have a stash of spare glasses, which helps a bit. But doesn't stop him fretting about the pair he originally lost, so still a huge energy drain. Oh well - onwards!

 

[wurrienot]

You are so right, @Harky! Most people have no idea of what goes on behind the scenes. The most simple of everyday tasks become a huge challenge. My OH misplaced his glasses so many times in one day I lost count. So half the day is spent helping him look for his glasses, and other things don't get done. I have a stash of spare glasses, which helps a bit. But doesn't stop him fretting about the pair he originally lost, so still a huge energy drain. Oh well - onwards!

Oh yes, I feel like this. And as I'm trying to run 2 houses, there's never enough time in the day so when dad decides he wants to change his shirt and I know that's going to take at least an hour of me standing there trying to assist without him noticing... frustrating doesn't seem to cover it. Add in the constant lost glasses,wrong glasses, dirty glasses, lost hearing aids, hearing aid batteries, one sock missing, wearing one shoe and one slipper, making coffee in the kettle, cereal and milk in the cutlery drawer and I feel as if I'm living in a parallel universe.

 

[Red Riding Hood]

Oh yes, I feel like this. And as I'm trying to run 2 houses, there's never enough time in the day so when dad decides he wants to change his shirt and I know that's going to take at least an hour of me standing there trying to assist without him noticing... frustrating doesn't seem to cover it. Add in the constant lost glasses,wrong glasses, dirty glasses, lost hearing aids, hearing aid batteries, one sock missing, wearing one shoe and one slipper, making coffee in the kettle, cereal and milk in the cutlery drawer and I feel as if I'm living in a parallel universe.

It's a drain, and very frustrating, certainly! Sorry you're going through that as well. There also seems to be no solution, sadly I find you really can't try to hurry him, that just makes it worse. And he has no sense of time, so therefore no idea of how long it takes him to do a simple thing. It's a lesson in patience, but some days there's just not the extra hours available. It DOES seem like a parallel universe, you're right People living normal lives have no idea how very strange, sad and small our world has become. There is understanding and empathy in this forum, at least. Grateful for that!

 

[Harky]

Oh yes, I feel like this. And as I'm trying to run 2 houses, there's never enough time in the day so when dad decides he wants to change his shirt and I know that's going to take at least an hour of me standing there trying to assist without him noticing... frustrating doesn't seem to cover it. Add in the constant lost glasses,wrong glasses, dirty glasses, lost hearing aids, hearing aid batteries, one sock missing, wearing one shoe and one slipper, making coffee in the kettle, cereal and milk in the cutlery drawer and I feel as if I'm living in a parallel universe.

@wurrienot , sorry for probably repeating myself but a bit of thought behind how to put these things in cupboards with childproof locks the easier it becomes for you. I constantly update them as I come across other things she finds to create havoc with. Life gets SSooo much easier. I also keep things like other shoes 👞 or clothes out of sight, giving them an option of things to change into and they will (just part of the illness). I totally understand your frustration. Hope some of the suggestions work 🙏

 

[wurrienot]

@wurrienot , sorry for probably repeating myself but a bit of thought behind how to put these things in cupboards with childproof locks the easier it becomes for you. I constantly update them as I come across other things she finds to create havoc with. Life gets SSooo much easier. I also keep things like other shoes 👞 or clothes out of sight, giving them an option of things to change into and they will (just part of the illness). I totally understand your frustration. Hope some of the suggestions work 🙏

I'm beginning to move things into the garage when they're not in use because dad becomes surprisingly agile when I'm not around and managed to find things that I've put on high shelves or at the back of cupboards. Half the problem is that he doesn't recognise anything as being his so he gets everything out and disregards it - usually on to the floor!