Tonight I actually snapped

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Grace L

Registered User
Jun 14, 2014
647
NW UK
Hello Dave :)
Not wishing to nag, but have a think about getting that list together (we can help you if you like)...

It's so easy to forget mentioning this or that symptom to the Docs, and wouldn't you know it,
you remember it 5 minutes later..... when you are on your way home.

You've already been told by others, write a letter and pass to the Consultant (or his/her nurse)
on the day of Mrs Dave's appointment.
You are not betraying confidence, you are helping, both of you.

I think the first thing you (I know I did) should say is that if the Doctor/Nurse asks Mrs D,
x y z, the answer given might not be the true answer. At least pre-warn the Doctor.


You said that Mrs D does not cook / clean house etc.... this is significant, and the Doc should know.
It might seem a little mean , but unfortunately, you are going to have to (for the appointment)
concentrate on the negative. The Doctors have no way of knowing what Mrs D can and cannot do...

There are going to be several 'should I mention' this/ that ?
Mention as much as you can, no matter how small ....
Ask your son (maybe his girlfriend too) about mum and the things she can and cant do.

Oh, and if you can ask the Doc for their secretary e-mail address.

Take care
 

Dave K

Account Closed
Apr 14, 2014
1,426
57
Barnsley (UK)
Hello Dave :)
Not wishing to nag, but have a think about getting that list together (we can help you if you like)...

It's so easy to forget mentioning this or that symptom to the Docs, and wouldn't you know it,
you remember it 5 minutes later..... when you are on your way home.

You've already been told by others, write a letter and pass to the Consultant (or his/her nurse)
on the day of Mrs Dave's appointment.
You are not betraying confidence, you are helping, both of you.

I think the first thing you (I know I did) should say is that if the Doctor/Nurse asks Mrs D,
x y z, the answer given might not be the true answer. At least pre-warn the Doctor.


You said that Mrs D does not cook / clean house etc.... this is significant, and the Doc should know.
It might seem a little mean , but unfortunately, you are going to have to (for the appointment)
concentrate on the negative. The Doctors have no way of knowing what Mrs D can and cannot do...

There are going to be several 'should I mention' this/ that ?
Mention as much as you can, no matter how small ....
Ask your son (maybe his girlfriend too) about mum and the things she can and cant do.

Oh, and if you can ask the Doc for their secretary e-mail address.

Take care
Too be honest, I would not know what to print out as I have said so much, I don't want to convey all my postings to the psychiatrist as he / she wpould fa;l asleep

I have said stuff that is irrelevant and would not help my wife and I, I have stuff in anger that I wish I could take back

I know what I want to say but can I actually say it or have the time to say it (40 minute appointment) without sounding like it is about me, me, me

I need those 40 minutes to go to my wife although I secretly know she will be in total denial and on her best behaviour for those 40 minutes

My daughter is coming but she also does not know my true feelings as how can I tell her, it is her Mum at the end of the day, she will listen to her Mums's denial and take it as the truth.

I am stuck between a rock and a hard place as I do not wish to upset my wife and do not wish to talk down my wife to her daughter, if I did I would loose both, this I am sure of

So, what do I email to the memory clinic

I have 3 or 4 days to sort this out
 

Sue J

Registered User
Dec 9, 2009
8,035
How about using the following headings to jot down some points Dave?

Washing and Dressing: eg. I have to be up every day by 5am so that I can be washed , dressed and ready before my wife get up and the same for the other end of the day. I have to assist my wife in choosing clothes, washing and dressing.

Shopping, cooking and eating:
(Including understanding of money, ability in the kitchen, ability to remember to eat and/or diet)

Cleaning of the home, washing/ironing:
Relationships & interactions with family members inside the home:
Social interactions outside the home:
Aggression/violence:
Taking of any medications:

It will help too if when writing the above you also say how this has changed and over what time frame.

If you can get this to the psychiatrist prior to the appt you will not be taking up your wife's time as you describe but enabling you, your wife and the psychiatrist to make the most of the 40 mins.

You are not talking your wife down to her daughter unless you think all of her above strange behaviours are not dementia related?
 
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Wolfsgirl

Registered User
Oct 18, 2012
1,028
Nr Heathrow, Mum has AD & VD
Please don't think you are criticising by putting things in writing - you are stating facts only about Mrs Dave's symptoms, please keep this in mind. i.e. you are not saying Mrs Dave doesn't do housework, cooking, shopping etc. because she is lazy - that would be critical - just state it no longer happens. (The fact that you do it all is irrelevant to this and if you mentioned it, you would then be making it about you) that is for another occasion.

Please mention Mrs Dave making purposeless visits into town on the bus, your fear for her safety, inappropriate behaviour (touching faces etc.) to others (she could get attacked for this :eek:) repeated repeated questions, financial inability, cravings for sweet things and dental health.

You are good with words so please put something together (if you would like to) so we can help you if it comes across as sounding critical - I promise honesty but no 'tongue in cheek stuff' this is too important. I am sure if you think about her with compassion as you did today when she felt able to share with you how she felt poor love, you will do just fine.

The bit about you is this only, (others may have ideas too) you are trying to run the home, trying to earn a living and keep your wife safe and it is overwhelming at times as you have received almost zero support.
Sharon x
 

SoyHJ

Registered User
Mar 16, 2013
477
Sue is right. There are certain key points which they look for, of which she has already listed some. By getting that all that across to the neuropsych before the appt, they will arrive being already up to date and, as Sue says, it will help both you and them to make the most of the time available.
 

Dave K

Account Closed
Apr 14, 2014
1,426
57
Barnsley (UK)
Thank you everyone for your advice and support.

I had to tell my wife what I was gong to do and it all kicked off, I am sure I am an idiot, I told her that I think it is best as to not waste the doctors time and pre-tell him all my concerns

Well, bad move on my part, all hell has just broken loose, I am evil, I hate her, she want's a divorce etc. etc.

I find it very hard in choosing what I would say on this visit or pre-write to the psychiatrist. I am not good at telling porkies or "love lies" to my wife, yes I am an idiot

Now she is saying that she is not going, well she blooming well is with or without me writing a pre-information page

I will have to take it on the chin tonight and hope that it all goes well on Wednesday although my wife will be an absolute model during her visit

Why do I worry what I want to say but my wife could not care less how I feel..

Rock bottom, yet again due to my stupid thinking
 

Noorza

Registered User
Jun 8, 2012
6,542
No Dave you are not an idiot, you like the rest of us are finding our way through this disease. I informed mum I had claimed for carers, because in my world, honest, open and above board is the only way to go. I didn't factor in dementia and paranoia and like you all hell has let loose.

We have to unlearn the rules of honesty that have been instilled in to us and replace them with what will cause the least upset and distress to those with dementia. It's a hard place to be but you did the right thing for the right reasons even if the outcome hasn't been positive.
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
Why do I worry what I want to say but my wife could not care less how I feel..
Perhaps it's not that your wife could not care less how you feel. Sometimes empathy is lost by a dementia sufferer. My OH lost all empathy and did not understand why I was crying when my Grandson was showing signs of approaching cot death and was rushed to hospital. It wasn't Pete's fault he just couldn't understand.

Whether you are for or against 'love lies' is up to you; but sometimes I feel it saves the dementia sufferer anxiety.
 

dilne

Registered User
Mar 1, 2014
181
Newcastle
No you aren't an idiot, you were just trying to be honest and up front. Unfortunately your wife is no longer able to deal with that. Especially about a disease she denies she has.
So although you feel uncomfortable with love lies, for both of you it will probably make life a little less stressful.

Sent from my GT-S6810P using Talking Point mobile app
 

Raggedrobin

Registered User
Jan 20, 2014
1,427
Right Dave, the nag team is all on board on this one.
You have to go outside your comfort zone to do this. i think you are almost more comfortable being 'between a rock and a hard place' because it is what you have become familiar with. You need to somehow get passed believing that the situation is doomed.

So, here's how it works. We HAVE to lie to dementia sufferers sometimes, it is the only way to get over certain situations and you need to man up and do this before this consultation. As has been said, the only reason for this is for the good of your wife. I am happy to say that yes, I do think you are an idiot for telling her but just get over that and get the list written (out of her view, of course) and then, ta da, you are no longer and idiot. Re what she thinks about the appointment, just say you were wrong, it is a silly idea to write it all down and you won't. She is right on this. LIE. You have to.

You are going to have to find a way to get the list and a covering note to the consultant, I would suggest you ring his secretary on Monday (out of wife's earshot) and ask if there is an email address you could send some info to the consultant on. Make sure it gets through to the secretary or whoever and make sure it says clearly not to be discussed in front of Mrs Dave.

Yes, a whole load of lies. You are trying to care for your wife, you have to do this to care for her, just do it. Xx
 

bilslin

Registered User
Jan 17, 2014
762
hertforshire
Back from saving the Spanish Omelette. Oh Dave. I know that you don't want to tell little white lies to your wife. I didn't but I'm afraid that sometimes its the only way. I pick and choose very carefully what I say to mum now. Its sad but that's living with AD. Lets hope by Wednesday this conversations been forgotten by Mrs D. Or you might have to tell some little white ones to get her there. I told my mum they was checking her meds. I found at the beginning to talk about mum, when she was sitting next to me. But now its important that the clinic knows what really happening. Even note my mum still thinks she's doing the lot and sadly all she does is sits in her chair a sleep. sending you a hug Dave because your going to need one. And a hug for Mrs D too
 

Sue J

Registered User
Dec 9, 2009
8,035
Thank you everyone for your advice and support.

I had to tell my wife what I was gong to do and it all kicked off, I am sure I am an idiot, I told her that I think it is best as to not waste the doctors time and pre-tell him all my concerns

Well, bad move on my part, all hell has just broken loose, I am evil, I hate her, she want's a divorce etc. etc.

I find it very hard in choosing what I would say on this visit or pre-write to the psychiatrist. I am not good at telling porkies or "love lies" to my wife, yes I am an idiot

Now she is saying that she is not going, well she blooming well is with or without me writing a pre-information page

I will have to take it on the chin tonight and hope that it all goes well on Wednesday although my wife will be an absolute model during her visit

Why do I worry what I want to say but my wife could not care less how I feel..

Rock bottom, yet again due to my stupid thinking
Dave please stop blaming yourself for everything that results in an outburst. Your wife has dementia and she can't help it, what you are learning though is how to cope with potential outbursts and how to avoid them - when all you really want is your wife to be the woman you know, loved and married. When you are blaming yourself you are failing to see the dementia, and failing to see your wife behind the dementia which then makes risk of outbursts much higher.

Lyn T is right your wife has lost empathy and we often can project onto others how we are ourselves. Your wife is probably frightened about going to the appointment she needs you to say 'it's alright I'm here for you' just like you did earlier (and I can hear the cogs going 'well who is here for me?' we are all behind you.

It is a shame that teams haven't yet learnt, nor built into their apppointment system space and time for a carer to be seen separately whilst the caree could be being assessed in some practical task or test. You would then be asked to fill out a pre appt questionnaire re. things suggested earlier.

It must seem a bit like being in the boxing ring, down again, but you're not out, so up you get, yes 'take it on the chin' and miss the next verbal left hook.

Chin up chuck.
 

Wolfsgirl

Registered User
Oct 18, 2012
1,028
Nr Heathrow, Mum has AD & VD
Sue J you are just amazing! x

Dave please stop blaming yourself for everything that results in an outburst. Your wife has dementia and she can't help it, what you are learning though is how to cope with potential outbursts and how to avoid them - when all you really want is your wife to be the woman you know, loved and married. When you are blaming yourself you are failing to see the dementia, and failing to see your wife behind the dementia which then makes risk of outbursts much higher.

Lyn T is right your wife has lost empathy and we often can project onto others how we are ourselves. Your wife is probably frightened about going to the appointment she needs you to say 'it's alright I'm here for you' just like you did earlier (and I can hear the cogs going 'well who is here for me?' we are all behind you.

It is a shame that teams haven't yet learnt, nor built into their apppointment system space and time for a carer to be seen separately whilst the caree could be being assessed in some practical task or test. You would then be asked to fill out a pre appt questionnaire re. things suggested earlier.

It must seem a bit like being in the boxing ring, down again, but you're not out, so up you get, yes 'take it on the chin' and miss the next verbal left hook.

Chin up chuck.
 

Grace L

Registered User
Jun 14, 2014
647
NW UK
OK, right Mr Dave, somehow between us, we are going to come up with a list for Mrs Dave (and you).

Please , try and get used to the 'love lies', as I think they may feature quite a bit in the Alzheimer's journey.

If Mrs Dave is grumpy, and says to you "Why did you tell the Doctor about me eating sweets?"
say.... the Doc or nurse may need a blood/ wee test, and it may show up on the test.
It's an example of a teeny love lie ....

If daughter is coming to the appointment, she needs to be pre-warned about what you have said to the doctor...

Ask your daughter what was it that made her return her mum early?
ask her did she notice anything that you need to mention to the doctor....

I think you'll fine we on TP are going to help you get through this Dave.
 
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