So it is Official
- Thread starter Fugs
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- alzheimer's disease
@Bevhar going into detail would take too long. More succinctly my wife can be very stubborn. If she doesn't want to do it, then she isn't going to! We walk by the sea every day, come rain or shine.
It is what it is.
An update for my own records.
It is just over 2 years since I began to realise that my wife's problems was not simply down to the menopause. Somewhat over 1 year since my wife was officially diagnosed with Alzheimer's, and placed at the cusp between Mild and Moderate dementia. Her decline is relentless, with her ticking pretty much all of the boxes for Moderate dementia.
A year ago she could make a cup of tea/coffee for me, although I was never sure how many cups I would get, or whether I would get a cup of CofTea! Now she asks if I would like a cup of tea, wanders off to the kitchen, and will then return empty handed. Sometimes the kettle has been put on, and maybe cups put out, but tea is never made.
Her language skills are markedly deteriorated. Sentences can hang unfinished, or finished with something that she reads in front of her. Confabulation is common, such as telling a friend that our son is working with David Attenborough. The friend was very excited.
She currently has an obsession with the cat carrier, putting items into it, carrying it around, and at times is very confused that the cat is not in it, despite the cat being right in front of her. (If something goes missing it is the first place I look atm)
She doesn't appear to have visual hallucinations, but appears to have the audio equivalent. She will often burst out laughing when we are watching the TV (particularly the news) stating "they just said <rude word>", or she will ask if I have heard a dog barking etc.
She follows me round the house relentlessly, so for the kitchen I have placed a comfy chair for her to keep her happy.
Tears are a daily occurrence, where if I can get an answer from her she states that she feels odd, or very tired. Obviously I don't know what she is experiencing, but it is obviously difficult and upsetting for her.
No aggression, but she does a good line in stoney faced fury.
It is just over 2 years since I began to realise that my wife's problems was not simply down to the menopause. Somewhat over 1 year since my wife was officially diagnosed with Alzheimer's, and placed at the cusp between Mild and Moderate dementia. Her decline is relentless, with her ticking pretty much all of the boxes for Moderate dementia.
A year ago she could make a cup of tea/coffee for me, although I was never sure how many cups I would get, or whether I would get a cup of CofTea! Now she asks if I would like a cup of tea, wanders off to the kitchen, and will then return empty handed. Sometimes the kettle has been put on, and maybe cups put out, but tea is never made.
Her language skills are markedly deteriorated. Sentences can hang unfinished, or finished with something that she reads in front of her. Confabulation is common, such as telling a friend that our son is working with David Attenborough. The friend was very excited.
She currently has an obsession with the cat carrier, putting items into it, carrying it around, and at times is very confused that the cat is not in it, despite the cat being right in front of her. (If something goes missing it is the first place I look atm)
She doesn't appear to have visual hallucinations, but appears to have the audio equivalent. She will often burst out laughing when we are watching the TV (particularly the news) stating "they just said <rude word>", or she will ask if I have heard a dog barking etc.
She follows me round the house relentlessly, so for the kitchen I have placed a comfy chair for her to keep her happy.
Tears are a daily occurrence, where if I can get an answer from her she states that she feels odd, or very tired. Obviously I don't know what she is experiencing, but it is obviously difficult and upsetting for her.
No aggression, but she does a good line in stoney faced fury.
Yes and we are just supposed to cope with it, don't say anything and smile as if all is right with our world, where as in reality we are screaming inside. My piglet showboats wondefully, it's amazing to watch and listern too. Had a lady from the council turn up the other day to do a care assessment. Asked piglet lots of questions, and at no point did this woman ask me anything. So wrote a long email to her next day, surprise surprise have not had any reply. II suppose i'm just making it all up and everything is fine. Do the council mind if I strangle one of their workers?
It’s awful that no one asks how we carers are doing I’m lucky enough to have a very good dementia adviser also a social practitioner This is only because I’ve gone out looking for help It’s exhausting enough as a career without having to look for help Just wish I live where the admiral nurses are availble
How can one person can occupy so much of my time! This is the first time that I have been able to describe this week.
Tuesday wy wife had her first annual dementia review at the GP, and maybe her last! I can't remember everything exactly as it was all a bit traumatic for me, but the gist is below.
First the GP wanted to know when the last time we had seen the Neurologist. They did not seem to know that my wife had been discharged from the Neurologist into GP care.
A number of questions about how my wife was progressing which I did not want to answer in front of my wife, and my wife had no ability to answer. They probably thought me very unhelpful. I did note that her memory was a lot poorer, with the response "So the Donepezil is not working". I still don't know what to make of that statement.
Next, had we thought about putting a DNR in place? We'll I wasn't answering that in front of my wife. But they pushed on "Did I know what a DNR was" "yes". It is a "Do Not -" "Yes I know exactly what it means" . "Well perhaps when your wife has a lucid moment you can talk about it". What really?
I couldn't get out fast enough. Very traumatic for me. My wife didn't say much, except to mouth "help" to me. I have been expecting hysteria from my wife, but there hasn't been any. She has been more needy, been more tearful, and has flippantly talked about her might as well die. 💔
So I am not sure we will attend in a years time.
Tuesday wy wife had her first annual dementia review at the GP, and maybe her last! I can't remember everything exactly as it was all a bit traumatic for me, but the gist is below.
First the GP wanted to know when the last time we had seen the Neurologist. They did not seem to know that my wife had been discharged from the Neurologist into GP care.
A number of questions about how my wife was progressing which I did not want to answer in front of my wife, and my wife had no ability to answer. They probably thought me very unhelpful. I did note that her memory was a lot poorer, with the response "So the Donepezil is not working". I still don't know what to make of that statement.
Next, had we thought about putting a DNR in place? We'll I wasn't answering that in front of my wife. But they pushed on "Did I know what a DNR was" "yes". It is a "Do Not -" "Yes I know exactly what it means" . "Well perhaps when your wife has a lucid moment you can talk about it". What really?
I couldn't get out fast enough. Very traumatic for me. My wife didn't say much, except to mouth "help" to me. I have been expecting hysteria from my wife, but there hasn't been any. She has been more needy, been more tearful, and has flippantly talked about her might as well die. 💔
So I am not sure we will attend in a years time.
Oh dear @Fugs Some GPs just do not have a clue. I am so sorry to read what you have gone through during the review appointment. To ask about the DNR in front of your wife was just unforgivable. It might be an idea to write a letter to the practice manager outlining just what you thought about the structure of the review.
I would certainly make a complaint if you have the strength @Fugs. Such an insensitive doctor could do with some retraining.
In future if you have any more appointments I would write a note and either send it to the office in advance or take it with you and hand it to the receptionist for the doctor to read before they see you and your wife
It sounds as if the doctor you saw didn’t read up on previous appointments so better hand a note to them personally.
In future if you have any more appointments I would write a note and either send it to the office in advance or take it with you and hand it to the receptionist for the doctor to read before they see you and your wife
It sounds as if the doctor you saw didn’t read up on previous appointments so better hand a note to them personally.
Oh fugs. I’ve read your posts all the way through this thread. It’s just so difficult isn’t it. We’re four years down the line with my husbands vascular dementia and I don’t know what to expect next. He was taken to hospital by ambulance on Sunday and was diagnosed with Covid. Then on Tuesday he half fell out of his bed, I just can’t explain, but I had to,call the fire brigade to get him lifted back in. Today he is packing to go back to Scotland. He’s very confused and hallucinates and eats and drinks very little. My social life has gone to pot but that can’t be helped. There’s nothing I can say to help you but just wish you and your wife peace and calm on this dreadful journey.
I assumed afterwards that this was a standard question, it was certainly on the form that they were filling in. But obviously not.
I sometimes think that it is the confusion that is the most difficult to deal with at times. But this can contrast with almost sensible talking (calling it a discussion is going too far) and only so long as you stay very much in the here and now.
Yeah, every "discussion" i have with my piglet almost immediately gets turn into a reminisce of past ( a very long time past) events, most present thing do not go in, as if she has not heard them, and world affaires are nonexistent unless its violence. That sticks like glue.
One of my bugbears I want to share eventually is how services handle these sensitive questions. I was many times asked about these in corridors, on phone calls when I was out and about ……in front of your wife when she may well still understand but not be able to process her response. I’m sorry.
The Banjoman’s brother thought he was doing well because when he phoned from France they had good conversations. It was his wife who pointed out that they only talked about things that happened years beforehand. Once the conversation was deliberately brought round to what had happened that day or week The Banjoman had “things to do” and ended the call.
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