decline in speech will it go completely!

[Dutchman]

My husband had word finding difficulties as the dementia progressed. I also managed to second guess him because we had been together so long I sometimes knew what he wanted to say even before he said it.

Eventually I spoke in very simple sentences eg. `Paul came.` `I went shopping.` and asked closed questions to which he was able to answer yes or no eg. `Are you all right?` ` Do you want a drink? `

He was also someone who was very verbal and it was painful to see him struggling to express himself.

I do sympathise with you. My wife talked so much I got fed up with it now I want her old ways back. Funny how we miss what we thought we’d never miss. It must be such a frustration for my wife who cannot engage with others and I wonder how she works her thoughts out without a full vocabulary going on in her brain. Of course, she doesn’t, and that’s part of the problem that leads to abnormal behaviour because she cannot rationalise her thoughts and that’s why I should be more understanding. But, on a day to day basis I get irritated and short with her.

 

[Grannie G]

But, on a day to day basis I get irritated and short with her.

We all know what we should do, but we are human and with the best will in the world are bound to be impatient at times.

 

[Ann Mac]

My Mil's speech is going now and I find it so sad. She did love to talk, and just a couple of years ago we would have days and days when she just never stopped, and I would find myself wishing for 5 minutes peace. About 18 months ago, she would lose the odd word - lipstick was often referred to as 'ice cream', and an ambulance was described as a 'noise truck' - but it was only ever the odd word, and right up to 3 or 4 months ago, she was still quite articulate and chatty. Then we started noticing that she would get stuck on a short sentence, or part of a sentence, while speaking - she would say something like ' I said that I would go down to the shops, down to the shops, down to the shops, down to the shops later'. And she was unaware that she was doing this. That was quickly followed by parts of her speech becoming just garbled sounds - not all the time, but with increasing frequency. For the last two weeks, she has deteriorated in terms of physical health, and often when I visit her in her CH now its all just inarticulate noises, often with her repeating a 'mum-mum-mum' or 'mah mah mah' type sound, and sticking her tongue out as she makes the noises. The worst bit is that she really seems to be trying to tell me something, is very aware that she can't get the words out, and it adds to her distress and agitation. Now and again, however, she can suddenly come out with a few words very clearly - giving her soup the other day, I asked had she had enough, only to have her look me straight in the face and tell 'I'll have it all'! And the visit before that, when she had spent most of the time making those awful garbled sounds, she suddenly found the ability to swear profusley at a member of staff who blocked her way when she tried to follow me as I left

 

[Dutchman]

We all know what we should do, but we are human and with the best will in the world are bound to be impatient at times.

Has anyone got a method for dealing with a VD sufferer who has little comprehension of time. We book a table for 18.00 locally , my wife’s getting ready at 16.30 shoes on, coat on. When I try to explain we have loads of time she gets aggressive, throws her bag and now I’m in no mood to eat. TV listings in the Radio Times are fraught with problems as the clock is meaningless. We were due to turn up at a camp site at 13.00, my wife’s getting ready at 05.00 for a 2 hour journey. It would be hysterical if it wasn’t so bloody annoying and likely to lead to arguments and another bad round of aggression. I’m not as good as some I’ve reading about who seem to cope with this all. It brings out the worse in me. Where I should be calm, I’m angry, where I should be understanding I’m hurt and very upset. In its worse times, when things are bad, I really feel like leaving her forever. Is that selfish? Only those who do this 24/7 are entitled to comment. All the running of day to day stuff is down to me now so it’s a lonely job. She hates anyone who presents a threat to her having me to herself....friends, even a chat across the table with my daughter is a threat! Now I’m followed around the house unable to have any me time with her asking where are you? It’s great that I can voice all this and not be judged. Thanks Forum.

 

[Grannie G]

If your wife has lost the concept of time @Dutchman and she doesn`t realise it, she will be anxious and either too late or too early for an appointment or arrangement.

It doesn`t stop it being irritating but she really can`t help it.

You are having a tough time. Have you considered getting someone it to be with your wife for a short time a few days a week so you can meet friends and have a bit of a breather.

 

[yak55]

Has anyone got a method for dealing with a VD sufferer who has little comprehension of time. We book a table for 18.00 locally , my wife’s getting ready at 16.30 shoes on, coat on. When I try to explain we have loads of time she gets aggressive, throws her bag and now I’m in no mood to eat. TV listings in the Radio Times are fraught with problems as the clock is meaningless. We were due to turn up at a camp site at 13.00, my wife’s getting ready at 05.00 for a 2 hour journey. It would be hysterical if it wasn’t so bloody annoying and likely to lead to arguments and another bad round of aggression. I’m not as good as some I’ve reading about who seem to cope with this all. It brings out the worse in me. Where I should be calm, I’m angry, where I should be understanding I’m hurt and very upset. In its worse times, when things are bad, I really feel like leaving her forever. Is that selfish? Only those who do this 24/7 are entitled to comment. All the running of day to day stuff is down to me now so it’s a lonely job. She hates anyone who presents a threat to her having me to herself....friends, even a chat across the table with my daughter is a threat! Now I’m followed around the house unable to have any me time with her asking where are you? It’s great that I can voice all this and not be judged. Thanks Forum.

There's no answer I'm afraid, that's just the way it is.
I always found it best not to tell mum too far in advance if we were going out or had to be somewhere at a certain time, tat helped me, try that and let us know if it helps you x

 

[Diannie]

Sadly. It would appear so. After 5 years my husband also has Progressive and Expressive Dysphasia. Which means he cannot understand what is being said to him. Therefore he cannot find words to answer. It is so sad to see him struggling to understand when he is spoken to

 

[PJ]

I’ve just been reading through this thread about speech (not all of the comments) & I was wondering - when speech goes is the person with dementia still capable of writing? I’m thinking in regard to early onset FTD. Thank you

 

[lemonjuice]

I was wondering - when speech goes is the person with dementia still capable of writing?

I think, like with everything else with dementia, much depends on an individual and if vascular related, which area of the brain is affected. I would presume generally reading and writing would go before speech, but again I'm sure there are exceptons to the rule.

 

[Dutchman]

I do sympathise with you. My wife talked so much I got fed up with it now I want her old ways back. Funny how we miss what we thought we’d never miss. It must be such a frustration for my wife who cannot engage with others and I wonder how she works her thoughts out without a full vocabulary going on in her brain. Of course, she doesn’t, and that’s part of the problem that leads to abnormal behaviour because she cannot rationalise her thoughts and that’s why I should be more understanding. But, on a day to day basis I get irritated and short with her.

Has anyone got a method for dealing with a VD sufferer who has little comprehension of time. We book a table for 18.00 locally , my wife’s getting ready at 16.30 shoes on, coat on. When I try to explain we have loads of time she gets aggressive, throws her bag and now I’m in no mood to eat. TV listings in the Radio Times are fraught with problems as the clock is meaningless. We were due to turn up at a camp site at 13.00, my wife’s getting ready at 05.00 for a 2 hour journey. It would be hysterical if it wasn’t so bloody annoying and likely to lead to arguments and another bad round of aggression. I’m not as good as some I’ve reading about who seem to cope with this all. It brings out the worse in me. Where I should be calm, I’m angry, where I should be understanding I’m hurt and very upset. In its worse times, when things are bad, I really feel like leaving her forever. Is that selfish? Only those who do this 24/7 are entitled to comment. All the running of day to day stuff is down to me now so it’s a lonely job. She hates anyone who presents a threat to her having me to herself....friends, even a chat across the table with my daughter is a threat! Now I’m followed around the house unable to have any me time with her asking where are you? It’s great that I can voice all this and not be judged. Thanks Forum.

I know this difficult but where else can I ask this? What’s the likely time scale for VD and what’s to expect within the decline of the condition. I know everyone is different but generally I’d like to know.

 

[Marnie63]

I know this difficult but where else can I ask this? What’s the likely time scale for VD and what’s to expect within the decline of the condition. I know everyone is different but generally I’d like to know.

That's an interesting question, and one I guess a lot of us have Googled or at least wondered about! In my case it's my mum. As soon as she was diagnosed I looked it up and it seems to be around 6 years, with a stipulation that it will vary from person to person. So, not much help there! I have a friend whose father lived for about 6 years from when it was really noticeable (sadly he went right to end stage, in spite of this being quite uncommon I understand - on the 'Understanding Dementia' course I attended, the psychiatrist giving the talk said very few people live to end stage, ie. total brain shutdown and therefore total body shutdown, most, he said, will die of whatever they would have died of any way). Is that true? I don't know.

It's a horrid thing to think about and to try to research, but because dementia is so unpredictable and no medics can really tell us what to expect, I think it just makes it all so much harder as we don't know "how long".

Mum is 92. She was fit before her mental decline, diabetes and high BP, but apart from that fine, walking with a stick and very bright mentally at 89. She had an 'event' suddenly that pushed her over into severe cognitive impairment. She was diagnosed with Vascular Dementia due to Small Vessel Disease. It was probably slowly building over the preceding years. In October it will be three years since all this started. Now she is mostly bed bound, cannot walk (though can still just about weight bear for the odd transfer) and has no control over toilet function. I'm amazed she's still here, but she's strong in so many ways. I have a horrible feeling she may go close to end stage, like my friend's father. I don't really want to watch that happen, but I suspect I will be doing so. GP has said if she has a big stroke, which I understand can be very likely with VaD, then she could die due to that, I hope that if she has a big one, then she does go with it, as it will leave her in a much worse state. He has also told me that once bedbound, the decline will be faster. Sometimes I don't know whether to feel hopeful or cry about a faster decline. No getting my life back until she's gone. It's dreadful.

 

[Rosie4u]

This was the first thing we noticed with my husband and now 18 months after diagnosis of Alzheimer’s he cannot hold a conversation.I don’t think he understands what I say and will chat with meaningless words.He gets upset sometimes because he can’t tell me something .
Sadly he lost the ability to write early on and Im not sure he can read. I keep meaning to get some pictures so when he’s asking me for something he could point to it. He doesn’t really know there is anything wrong with him.
It’s hard though but how frustrating for PWD.

 

[kindred]

I try hard to work out what he is trying to say or i change the subject and try and distract him i can feel him becoming more withdrawn i just cuddle him more and tell him how much i love him heartbreaking stuff

Yes, Keith now sort of talks bill and ben flowerpot men stuff with posh business terminology thrown in. I pretend we are having a business negotiation and when the staff pass us by, they grin at me and press my shoulder. Gxxxx

 

[Dutchman]

This was the first thing we noticed with my husband and now 18 months after diagnosis of Alzheimer’s he cannot hold a conversation.I don’t think he understands what I say and will chat with meaningless words.He gets upset sometimes because he can’t tell me something .
Sadly he lost the ability to write early on and Im not sure he can read. I keep meaning to get some pictures so when he’s asking me for something he could point to it. He doesn’t really know there is anything wrong with him.
It’s hard though but how frustrating for PWD.

I feel your pain and upset. My wife is now almost without comprehensive speech and cannot write a greetings card. No recognisable words. This is a person who would run adult classes, win at word games, always speak too much that I sometimes couldn’t get a word in edgewise. Now very little speech and that that is said is mostly misunderstood information.
I just wanted to say that I don’t know about you and your husband, but I have a photo of my wife just prior to things going wrong it chokes me up seeing a bright lady smiling, ,hair clean and face full of delight. That’s my wife, that’s the one I want back, who had opinions, who shared all our decisions, who had a life of her own. Now my wife is becoming a shadow of that person in the picture, not just older but different. I hate it, I cry over it and there’s nothing I or anyone can do. Feeling sorry for myself, you bet. But I also feel terribly sorry for my wife who asked for none of this. It’s sad and cruel.

 

[Rosie4u]

I feel your pain and upset. My wife is now almost without comprehensive speech and cannot write a greetings card. No recognisable words. This is a person who would run adult classes, win at word games, always speak too much that I sometimes couldn’t get a word in edgewise. Now very little speech and that that is said is mostly misunderstood information.
I just wanted to say that I don’t know about you and your husband, but I have a photo of my wife just prior to things going wrong it chokes me up seeing a bright lady smiling, ,hair clean and face full of delight. That’s my wife, that’s the one I want back, who had opinions, who shared all our decisions, who had a life of her own. Now my wife is becoming a shadow of that person in the picture, not just older but different. I hate it, I cry over it and there’s nothing I or anyone can do. Feeling sorry for myself, you bet. But I also feel terribly sorry for my wife who asked for none of this. It’s sad and cruel.

Yes I have a particular photo of before - I’ve stopped taking them now because it’s not him any more - I can see it in his eyes. I also feel sorry for me and our life and my heart breaks for him - a man who has never done anyone any harm - so cruel you are right

 

[caqqufa]

I haven't been on here for quite some time but following this thread with interest as my husband had also reached the 'aphasia' stage. He was very articulate so it was quite a shock when he started stopping in the middle of sentences because he couldn't find the word! and so sad at his frustration at 'loosing my own language' as he used to say. I learnt to try and understand what he had on his mind and also learnt not to correct him when he used the wrong word or spoke out of context. Empathy comes into play a great deal although it is not easy to get into their reality. But getting into the feeling of what they are trying to say would reduce a lot of the frustration and agitation and what seems to be aggression. , same as if you're dealing with a child. The trajectory of each PWD is different despite the similarities. For those who have not come across it I would recommend the book 'I'M STILL HERE' by John Zeisel.
My experience is still very much alive in my mind and feel for you deeply and my heart goes out to you.. So do come to TP, it's where you can rant but find understanding and companionship and strength in such a difficult time of your lives.